Caring for Children with Complex Needs in the Community

Caring for Children with Complex Needs in the Community Caring for Children with Complex Needs in the Community © 2008...

Author: Jean Teare

48 downloads 873 Views 1MB Size Report

This content was uploaded by our users and we assume good faith they have the permission to share this book. If you own the copyright to this book and it is wrongfully on our website, we offer a simple DMCA procedure to remove your content from our site. Start by pressing the button below!
Report copyright / DMCA form

DOWNLOAD PDF

Caring for Children with Complex Needs in the Community

Caring for Children with Complex Needs in the Community © 2008 Blackwell Publishing. ISBN: 978-1-405-15177-1

Teare FM.indd i

Edited by Jean Teare

1/21/2008 4:02:50 PM

For my dad, who would have been proud Jean Teare

Teare FM.indd ii

1/21/2008 4:02:51 PM


Edited by

Jean Teare

Teare FM.indd iii

1/21/2008 4:02:51 PM

© 2008 by Blackwell Publishing Ltd Blackwell Publishing editorial offices: Blackwell Publishing Ltd, 9600 Garsington Road, Oxford OX4 2DQ, UK Tel: +44 (0)1865 776868 Blackwell Publishing Inc., 350 Main Street, Malden, MA 02148-5020, USA Tel: +1 781 388 8250 Blackwell Publishing Asia Pty Ltd, 550 Swanston Street, Carlton, Victoria 3053, Australia Tel: +61 (0)3 8359 1011 The right of the Author to be identified as the Author of this Work has been asserted in accordance with the Copyright, Designs and Patents Act 1988. All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, electronic, mechanical, photocopying, recording or otherwise, except as permitted by the UK Copyright, Designs and Patents Act 1988, without the prior permission of the publisher. Designations used by companies to distinguish their products are often claimed as trademarks. All brand names and product names used in this book are trade names, service marks, trademarks or registered trademarks of their respective owners. The publisher is not associated with any product or vendor mentioned in this book. This publication is designed to provide accurate and authoritative information in regard to the subject matter covered. It is sold on the understanding that the publisher is not engaged in rendering professional services. If professional advice or other expert assistance is required, the services of a competent professional should be sought. First published 2008 by Blackwell Publishing Ltd ISBN: 978-1-4051-5177-1 Library of Congress Cataloging-in-Publication Data Caring for children with complex needs in the community/edited by Jean Teare. p.; cm. Includes bibliographical references and index. ISBN-13: 978-1-4051-5177-1 (pbk. : alk. paper) ISBN-10: 1-4051-5177-3 (pbk. : alk. paper) 1. Children with disabilities—Care—Great Britain. 2. Chronically ill children—Care—Great Britain. 3. Community health services for children—Great Britain. I. Teare, Jean. [DNLM: 1. Child Health Services—Case Reports. 2. Community Health Services—Case Reports. 3. Disabled Children—Case Reports. 4. Family Relations—Case Reports. 5. Social Support—Case Reports. WA 320 C2772 2008] RJ138.C42 2008 362.198⬘ 92—dc22 2007042415 A catalogue record for this title is available from the British Library Set in 10/13 pt Palatino by Newgen Imaging Systems (P) Ltd, Chennai, India Printed and bound in Singapore by Utopia Press Pte Ltd The publisher’s policy is to use permanent paper from mills that operate a sustainable forestry policy, and which has been manufactured from pulp processed using acid-free and elementary chlorine-free practices. Furthermore, the publisher ensures that the text paper and cover board used have met acceptable environmental accreditation standards. For further information on Blackwell Publishing, visit our website: www.blackwellpublishing.com

Teare FM.indd iv

1/21/2008 4:02:51 PM

Contents

Contributors Acknowledgements Introduction 1

Defining Children with Complex Needs Jean Teare

2

Commissioning Care of Children with Complex Needs Elizabeth Thornley

3

Caring for Technology-Dependent Children Who Require Respiratory Assistance Jean Teare

35

Caring for Children with Complex Needs Who Require Home Enteral Tube Feeds Janice High

57

4

1 21

5

Caring for Children with Complex Disabilities Jean Teare

75

6

Multi-Agency Care for Children with Complex Needs Mary Law

93

7

Being a Parent of a Child with Complex Needs – What Support Works Dawn Handley

113

Respite Care or Short Breaks for Families of Children with Complex Needs Margaret Hickie

129

Social Service Support for Disabled Children, Children with Complex Needs and Their Families Philip Gilligan and Juliet Taylor

149

8

9

10

Educational Support of Children with Complex Care Needs David Wray

Index

Teare FM.indd v

vii ix xi

167 189

1/21/2008 4:02:51 PM

Contributors

Philip Gilligan, BA (Hons), MA, CQSW, is a lecturer in social work at the University of Bradford. He qualified as a social worker in 1976 and has worked in Derbyshire, Kenya, Rochdale, Kirklees and Bradford. His experience includes managing a joint local authority/voluntary sector team providing services for children and young people with disabilities. His research and teaching are focused primarily on children and family social work. Dawn Handley, RGN, is a parent of a child with complex care needs, and has three other children. She qualified as a nurse in 1992 and works as a community nurse in a health visiting team in Bradford. Margaret Hickie, RGN, RSCN, has been Head of Care at Francis House Children’s Hospice since 1991, and has considerable knowledge and expertise in caring for children and families who require respite and palliative care. Janice High, MSc, RGN, RSCN, BSc, Community Health Specialist Practitioner (CCN), is a university teacher at the University of Bradford. Her professional background is paediatric nursing and children’s community nursing in Bradford. Her teaching responsibilities include children with complex care needs in pre- and post- registration nursing courses. Her research interests are user perspectives and children’s community nursing. Mary Law, RGN, MW, HV, RSCN, PG Dip Child Protection, BSc (Hons), is Lead for Pre-registration Nursing at the University of Bradford and a senior university teacher. She has background experience of working as a general nurse, midwife, school nurse, health visitor and was a community practice teacher, prior to joining higher education. She is also the Lead in the School of Health Studies for Child Protection. Juliet Taylor, BSc (Hons), CQSW, is a senior social worker with the Children with Disability team in Wakefield Metropolitan District Council. She qualified as a social worker in 1988 and has previously worked

Teare FM.indd vii

1/21/2008 4:02:51 PM

viii Contributors

as a generic community social worker, as Social Worker (Child Health) at Rotherham General Hospital and as a designated social worker specialising in work with children and families. Jean Teare, MSc, BA (Hons), RNT, RGN, RSCN, DN, is a lecturer at the University of Bradford. Her professional background is paediatric nursing, district nursing and children’s community nursing, working in Manchester and Oldham. Teaching responsibilities include child health, primary health care and children’s community issues at both undergraduate and postgraduate levels. Research interests are children’s community nursing and other services that work with children and families in the community. Elizabeth Thornley, BSc (Hons), RGN, RSCN, RHV, is a team leader in the Children’s Community team at Royal Bolton Hospital. She is currently practising as a children’s community nurse but she has previously worked as a nurse teacher and as a health visitor. David Wray has worked within the middle, secondary, adult and further education sectors, performing a variety of roles in the areas of teaching, management, professional and curriculum development and also teacher training. He left full-time, paid employment in 1997 to help his wife with the care of their son. However, he found that a significant amount of his time needed to be spent being an advocate for the family, trying to obtain the support services that were needed, but were not readily available. Although many people were eventually involved in their son’s care, passing on their skills and knowledge, it was still necessary for the parents to do a considerable amount of independent research to find solutions to the many problems the family faced. As a consequence, much of what has been written in Chapter 10 is the result of practical, as well as professional, experience.

Teare FM.indd viii

1/21/2008 4:02:51 PM

Acknowledgements

I would like to thank the child branch teaching team at the University of Bradford for their support professionally and personally, Helen Monks, Sarah Hamilton and Janice High. I would like to thank Jane Welby in particular for her critical feedback on draft sections of the work. I would also like to thank the practitioners in the Children’s Community Nursing team in Bradford for their expertise, Ercky Radic and Sarah Boron especially. I would also like to extend my thanks to all the contributors of the book for their hard work and quick responses to my comments. JT

Teare FM.indd ix

1/21/2008 4:02:51 PM

Introduction

There is no agreed definition of what constitutes ‘complex care needs’, yet this group of children are discussed in general health and social policy guidance (National Service Framework for Children; Department of Health, 2004). Professionals that work with children who have complex needs therefore have to decide who falls into this category to meet the criteria for service provision. Recognition of children with complex needs as a particular group requiring nursing and health care support has developed from research studies exploring and evaluating community children’s nursing services, children’s palliative services and children’s specialist social services (While et al. 1996; Kirk & Glendinning 1999; Heaton et al. 2003). Particular conditions have also emerged in the research literature related to complex needs – technology-dependent children, and children with long term, life-limiting illness or disability. Most of the literature appears as articles in journals or reports of studies that have been carried out. There are also anecdotal papers detailing function and delivery of services to children with complex needs. Several papers refer to service development and multi-agency collaboration (Watson et al. 2002; Sloper 2004) but there are no child focused textbooks related to caring for children with complex needs. This book will attempt to provide a comprehensive overview of all the main factors that relate to caring for children with complex needs and their families. It will bring together some of the information that has developed from research studies into one practical text, and develop further discussion of key issues that practitioners need to consider when working with this group of children. It is aimed at professionals working predominantly in the community who deal with children who have complex needs. This may include workers in respite care settings, social services, education and nursing teams. It will be useful to children’s nursing students on both pre- and post-registration courses who would like to gain an insight into family nursing of children who have complex and continuing health care needs. Case studies will be used to

Teare FM.indd xi

1/21/2008 4:02:51 PM

xii

Introduction

illustrate practical issues, when professionals from varying service backgrounds are working with children and families. Chapter 1 provides an overview of the terminology of complex care needs, and discusses health and social policy that has contributed to the emergence of children with complex needs being cared for in the community. The two main groups of children, those that are dependent on technology, and those with disabilities, are used as a focus for discussion, with Department of Health exemplars used as case studies to identify key points. Issues of multi-agency service provision, respite care, equipment and funding requirements, are considered as influencing factors in the identification of children with complex needs. Chapter 2 considers the funding of services to care for children with complex needs in the community. Commissioning services at a strategic level are discussed with links to individual care packages and business cases. The development of children’s trusts and collaborative organisation of health and social services to children are relatively new developments following governmental guidance to improve children’s well-being (Department for Education & Skills, 2004). This provides the context for discussion of how services may be funded and delivered to children with complex care needs. Children’s community nurses in particular are linked to planning and commissioning services to meet the needs of children with complex needs. Chapter 3 discusses the care needs of technology-dependent children, focusing on technology required to assist respiration. Children who receive long term ventilation, tracheostomy care or are dependent upon oxygen therapy are examples of technology dependency that categorise children as having complex needs. They are discussed using three case studies to illustrate aspects of specialised care, and resources that are necessary to care for this group. Negotiation of care with families and use of guidelines and protocols for professional carers in the home is discussed, to provide a comprehensive view of the particular care needs of children using technology in the community. Chapter 4 focuses on long term enteral tube feeding as a particular aspect of caring for many children with complex needs. Parental support is discussed from a practical, psychological and social point of view, considering how professionals may provide effective support to families. The difficulties of long term enteral tube feeding are highlighted from a parental viewpoint, with links to policy and guidance that could improve professional support in this area. Evidence-based recommendations for practice emerge from the discussion, placed in

Teare FM.indd xii

1/21/2008 4:02:52 PM

Introduction xiii

the context of many of the generic issues related to caring for children in the community. Chapter 5 discusses the care of children with complex disabilities, as improvements in health technology have led to long term survival of children with continuing and life-long care needs. The financial, social and physical demands of caring upon the family are considered in the context of multiple services and professionals that are available to help support the child and family. Key working and transitional care from child to adult services are discussed, as aspects of continuing support to children and young people with complex disabilities. Chapter 6 provides an overview of some of the communication issues that need to be considered when multiple agencies and professionals are involved in caring for children with complex needs. Portage services and Child Development Centres are used as examples of specialist services that may be involved with universal services to families, demonstrating the range of professionals that have to communicate with families as well as each other. Varying models of service provision such as Team Around the Child, Lead Professional and Key Workers are used to highlight good practice, while processes such as the Common Assessment Framework are considered to improve communication and collaboration between professionals. Chapter 7 is written by a parent of a child with complex care needs, and is therefore a realistic portrayal of the experience of caring for a child who may be described as having complex needs by services. The reality of being both a carer and a parent is presented, along with examples of how services can be supportive in the ongoing management of a child with complex needs. The complex relationship between professionals, the child and parents is highlighted with an interesting perspective on who can really be the advocate for a child, when the child disagrees with particular aspects of care. Chapter 8 considers family-focused respite care or short breaks for children with complex needs. The range of respite options is discussed with a particular focus upon hospice care and support of siblings. The impact of caring upon the family gives context to the discussion, allowing a broader consideration of parental expertise and negotiation of care as important factors in the provision of respite. Responsibilities of services to provide responsive and effective respite care is discussed through the use of a case study, demonstrating the benefit not only to the family, but to the young person receiving care. Respite is therefore viewed as a positive and pro-active experience for the recipient, rather than just relief from the pressure of caring for carers.

Teare FM.indd xiii

1/21/2008 4:02:52 PM

xiv

Introduction

Chapter 9 discusses the care of children with complex needs from the perspective of social services. Policy and legislation that guides the provision of social services is presented, focusing on children with disabilities. Practical application of social service support is demonstrated through the use of a case study. Particular strengths of social worker interaction with families are highlighted, demonstrating the range of services that can be provided to ensure children receive appropriate care, and that their families are assisted in making choices of how care will be delivered and maintained. The changing nature of care over time is considered, raising the issue that circumstances may alter necessitating re-assessment and re-negotiation of care to meet the complex needs of the child and family. Chapter 10 considers the educational support of children with complex needs. The author has a professional education background, but also has the expertise associated with being a parent of a child with complex needs. This experience has enabled him to raise issues concerned with the relationship between parents and educational professionals, and question the system when a child is losing skills and abilities, rather than developing them. Useful recommendations for practice are discussed providing links between a real-life case study example and services involved in the education of children with complex needs. Common threads that run through all the chapters are issues related to providing services to families that are caring for children in the community with needs that are often described as complex. The common issues relate to multi-agency collaboration and services working across professional boundaries to negotiate care with parents who are often the real experts in caring for children who have complex needs. Services aim therefore to support carers in continuing their care and ultimately ensuring that the needs of the child and family are met in a timely and effective manner, whether this is from a health, social service or education perspective.

References Department for Education & Skills (DfES) (2004) Every Child Matters: Change for Children. HM Government, London, UK. Department of Health (2004) National Service Framework for Children, Young People & Maternity Services: Disabled Children & Young People with Complex Needs. HMSO, London.

Teare FM.indd xiv

1/21/2008 4:02:52 PM

Introduction xv

Heaton, J., Noyes, J., Sloper, P. & Shah, R. (2003) Technology Dependent Children and Family Life. Research Works. Social Policy Research Unit, University of York, York, UK. Kirk, S. & Glendinning, C. (1999) Supporting Parents Caring for a Technology-Dependent Child. National Primary Care and Research Development Centre, University of Manchester, UK. Sloper, P. (2004) Facilitators and Barriers for Coordinated Multi-Agency Services. Child: Care, Health & Development, 30, 6, 571–580. Watson, D., Townsley, R. & Abbott, D. (2002) Exploring multi-agency working in services to disabled children with complex health care needs and their families. Journal of Clinical Nursing, 11, 367–375. While, A., Citrone, C. & Cornish, J. (1996) A Study of the Needs and Provisions for Families Caring for Children with Life-Limiting Incurable Disorders. Department of Nursing Studies, King’s College, London.

Teare FM.indd xv

1/21/2008 4:02:52 PM

1

Defining Children with Complex Needs Jean Teare

Key Points Parental participation in the care of their sick children has contributed to expectations from both parents and professionals that ultimately children with ongoing health care needs will be cared for at home by parents. This is a factor in the identification of children with complex care needs who have emerged as a group of children requiring care in community settings Factors associated with complex care needs relate to multi-agency involvement in care, the need for respite, technology dependence and disability Variations exist in identification and interpretation of complex care needs with care predominantly delivered by health and social services

Introduction This chapter will discuss the categorisation and identification of children who have complex care needs. In order to achieve this, a consideration of particular health and social policies that refer to children with complex care needs is necessary, followed by an overview of caring for children in the community. For the purpose of this chapter the policies discussed apply to England; there are variations in structure and delivery of child policy in Northern Ireland, Scotland and Caring for Children with Complex Needs in the Community © 2008 Blackwell Publishing. ISBN: 978-1-405-15177-1

Teare Ch-001.indd 1


1

1/21/2008 9:55:01 AM

2


Wales. However, the philosophy of improving child health through development of specific childcare strategies is common to all four countries, resulting in some commonalities such as Ministers for children’s health, and strategic plans or frameworks for child services. Health and social service views of children with complex care needs will be discussed through consideration of technology-dependent children and children with disabilities. Finally, specific issues of multi-agency collaboration, respite care, funding, equipment and risk assessment will be discussed as major contributory factors in the description and identification of children with complex care needs.

Health and social policy related to children with complex care needs

Case example 1

Maria

Maria was born prematurely at 28 weeks; she was ventilated and received intensive care in the neonatal unit. During this time she developed a pneumothorax and was diagnosed with cerebral palsy. When she was discharged home she remained under the care of the consultant neonatologist and the neonatal outreach nurse. Problems developed with movement and feeding, resulting in her referral to the local child development centre. Professionals involved in her care were the consultant paediatrician, speech and language therapist and physiotherapist for specialist support and advice. Routine child health promotion interventions were continued by the health visitor and general practitioner, and a social worker from the children’s centre became involved to give advice about benefits and support groups to Maria’s parents. The health visitor became the key worker for the family to co-ordinate services. At the age of 20 months Maria developed epilepsy. She also had delayed development affecting her ability to walk or achieve continence. Scoliosis was later diagnosed, which was severe enough to require surgery. (Adapted from Complex Disability Exemplar; Department of Health, 2005a.)

Case example 2

Rachel

Rachel stopped breathing shortly after a normal birth; she was ventilated and transferred to neonatal intensive care. She was diagnosed

Teare Ch-001.indd 2

1/21/2008 9:55:03 AM

Defining Children with Complex Needs 3

Case example 2

(Continued)

with congenital central hypoventilation syndrome. The result was that Rachel required mechanical ventilation for periods of the day as well as overnight, which will continue for the rest of her life. A tracheostomy was performed to make ventilation easier and care was transferred to a children’s intensive care unit. Once stabilised, Rachel was referred to the community nursing team to prepare for discharge. A key worker was identified from the team to communicate and negotiate with Rachel’s parents and services, to provide care for long term ventilation of Rachel at home. Funding was sought for a multi-professional care package as Rachel’s future care would be outside the normal core provision for child health care in the community. (Adapted from Long Term Ventilation exemplar; Department of Health, 2005b.)

The two examples above are used by the Department of Health (DH) to illustrate some of the aspects of complex care needs in children; they highlight both the diversity and commonalities that exist when children are described as having complex care needs. They also illustrate the two most common areas requiring intervention for children’s services: the child with a disability and the child who is technology dependent and requires ongoing medical and nursing care. The picture of children’s health in western societies has changed over the years, due to the development of health care knowledge, technology and drugs, which have contributed to the recovery of children who would not have survived previously. The resultant advances in health care have contributed to the fact that there is an increasing number of children who are dependent upon technology (Glendinning et al., 2001), in the form of equipment or specialist nursing support. In addition, there are children who have disabilities or life limiting illnesses that have also been supported by improved health care. As the number of children with continuing health and specialist care needs has increased it is not possible or feasible to continue caring for them in secondary care settings. Governmental policy (House of Commons Health Committee, 1997), and recognition of the best psychological outcomes for children, demands that health and nursing care needs are delivered at home, rather than long term care in hospital. Parental participation in the care of their sick children has also contributed to expectations from both parents and professionals, that ultimately children with ongoing health care needs will be cared for at home by parents.

Teare Ch-001.indd 3

1/21/2008 9:55:03 AM

4


Parental participation in the care of their sick children has increased over the last 50 years following publication of reports that highlighted the benefits to children (Ministry of Health, 1959; Department of Health & Social Security, 1976). In 1991, the Department of Health recommended that parents should be involved in the care of sick children in hospital, based on the premise that it improves the well-being of children physically and psychologically. The underlying ethos of parental participation has led to an expectation from professionals that parents will participate and eventually take over the care of sick children, particularly when an illness is long term. While (1992) in her study of parent’s views of hospital and home care found that several parents felt they were expected to care for their child. This has implications for exploitation of parents due to the lack of alternatives when children are viewed as medically stable and ready for discharge (Glendinning & Kirk, 2000). The House of Commons Health Committee (1997) recognises the additional responsibilities, disruption of family life and financial costs of caring for a child at home, but nevertheless reiterates that it is better for children to be cared for at home. Policy such as this influences professionals and contributes to the expectation that parents will care for children who have long term health needs.

Key policy related to children The philosophy of care in the community has developed from a political agenda of reducing inpatient care in acute services (DH, 1988). This was partly to reduce pressure on acute services, but also cost, as community care may be met from informal care and voluntary care, alongside professional agencies. In terms of caring for children in the community, policy has focused on health promotion and reducing health inequalities for vulnerable groups of children. The Quality Protects initiative (DH, 2000) focused on looked after children, with objectives related to improved life chances through better health, education and social care. Sure Start programmes (Department for Education & Employment, 2001) have been developed to target services and resources at disadvantaged children and communities, in an effort to address health inequalities and improve well-being. There are links between health, social and education services in the delivery of Sure Start initiatives with further plans to extend Sure Start Children’s Centres to all areas and ensure all Local Authorities make provision for services in their Children and Young People’s Plan (Department for Education & Skills (DfES) & Department for Work & Pensions, 2006).

Teare Ch-001.indd 4

1/21/2008 9:55:03 AM


The Children’s National Service Framework (NSF) (DH, 2004a) provides national standards to guide future service provision around the needs of children. The final standards were developed by eight external working groups, in consultation with practitioners and users, using evidence based information wherever possible. Chambers & Licence (2005) provide an overview of some of the evidence used to underpin the construction of the Children’s NSF standards, and consider how primary care services can use the NSF to improve services to children. Primary care is particularly important as the Children’s NSF is not disease based, but relates to all children and young people and their families. See Box 1.1 for Standards in England.

Box 1.1 National Service Framework for Children, Young People and Maternity Services Standard 1: Promoting health and well-being, identifying needs and intervening early Standard 2: Supporting parents or carers Standard 3: Child, young person and family centred services Standard 4: Growing up into adulthood Standard 5: Safeguarding and promoting the welfare of children and young people Standard 6: Children and young people who are ill Standard 7: Hospital services for children Standard 8: Disabled children and young people and those with complex health needs Standard 9: The mental health and psychological well-being of children and young people Standard 10: Medicines management for children Standard 11: Maternity services (DH, 2004a)

The Children’s NSF underpins the Every Child Matters: Change for Children programme (DfES, 2004), which sets out a national framework to co-ordinate the delivery of services to children and young people. This is supported by legislation in the form of the Children Act 2004, which outlines new statutory duties to clarify responsibilities of children’s services. Nationally, a Children’s Commissioner will raise awareness of the best interests of children and report annually to Parliament, and each Local Authority will appoint a designated lead

Teare Ch-001.indd 5

1/21/2008 9:55:03 AM

6


for children’s services. There are five key outcomes identified in the Change for Children programme to improve the well-being of children and provide a focus for services; see Box 1.2.

Box 1.2 Key outcomes identified in Change for Children programme Be healthy Stay safe Enjoy and achieve Make a positive contribution Achieve economic well-being (DfES, 2004)

Targets and indicators of achievement of the key outcomes have been included in the framework, along with inspection criteria for monitoring progress towards achievement of the outcomes (DfES, 2004). There are five core components of the guidance available to implement the Every Child Matters strategy, which is supported by governmental documentation (DfES, 2005) and is available on the web (www.everychildmatters.gov.uk). Current child policy therefore focuses on promoting health and well-being for all children, whatever their situation or condition. In terms of children with complex care needs, health and social policy tends to reflect particular health conditions or disabilities. An example is the guidance for children with palliative care needs (Association for Children with Life-threatening or Terminal Conditions and their Families & Royal College of Paediatrics and Child Health, 2003) or statutory legislation for children with disabilities (DH, 2000). These guidelines are aimed at specific groups of children, rather than all children with health needs. Together from the Start (DH & DfES, 2003) highlights the early identification of special needs and disabilities, in order to plan early intervention and support for children and families. This guidance is aimed at tackling inconsistent patterns of service provision and lack of co-ordination between services involved in care, but is restricted to children under the age of 3 years. General guidance for children with complex needs is contained within Standard 8 of the Children’s NSF (DH, 2004b), which recognises that identification and definition of children with complex needs is a problem due to variations in diagnosis, and provision of services to

Teare Ch-001.indd 6

1/21/2008 9:55:03 AM


children with ongoing health care needs. However the Standard determines that children with complex health needs include those that are disabled, have learning disabilities, autistic spectrum disorders, sensory impairments, physical impairments, or emotional/behavioural disorders. The breadth of this definition includes many children who do not require any health support or care, while others may need considerable medical or nursing care. For children requiring long term nursing or health care support it was suggested that children should not be cared for in hospital if the care that they required could be given at home (NHS Executive, 1996). However, the House of Commons Health Committee (1997) recognised that not all children who needed care at home received it, due to the disparity of children’s community nursing service provision.

Children’s community nurses Children’s community nursing services have increased dramatically (Whiting, 1998) across the UK in response to health policy, greater use of portable technology and parental expectations of home care. As a relatively new professional group, one of the ways children’s community nurses have established an identity is through professional expertise and knowledge identifying which children may benefit from the service. As a result, children who have posed challenges for services to deal with may have been categorised as having complex care needs, possibly referring to the fact that already existing services cannot meet these needs alone. This terminology has grown in popularity to incorporate many children who have both health and social care needs; in fact some services have responded to the apparent need and exist specifically to deal with children who have complex care needs. Recognition and identification of children who have complex needs as a specific group within current policy and practice is questioned (Emond & Eaton, 2004) as there appears to be lack of agreement upon definition of the term. The needs of the children who potentially fall into this group are broad, ranging through technology dependent, disabled, life limiting conditions, rare conditions that require multidisciplinary management, and continuing chronic conditions. The lack of a national strategy for children’s community nursing has meant that some areas have well developed community teams while other areas may not have a service or have very limited care provision. There is also considerable diversity of service provision (Winter & Teare, 1997) with each area developing individually according to local

Teare Ch-001.indd 7

1/21/2008 9:55:03 AM

8


needs and local funding arrangements. Some teams look after children with acute health care needs, while others provide care to children with complex and long term health needs, and some teams provide only specialist care to particular groups of patients. In fact, in some areas there is only one children’s community nurse rather than a team, so children’s care in the community may be provided by adult district nursing services or other primary care services. Health policy recommending the provision of children’s community services (NHS Executive, 1996; House of Commons Health Committee, 1997) provides guidance rather than directives for local trusts. Therefore, service arrangements have developed ad hoc rather than in a strategically planned manner nationally. Bradley (1997) suggests several reasons for the increase in children’s community nursing services. She suggests that children now have more clearly defined legal rights to demand the most appropriate care, and that professional belief in family care philosophies have encouraged parents to participate in care and therefore expect to take on the caring role. She also suggests that NHS policy changes have encouraged increased funding for community services as alternatives to hospital care. Whiting (2005) offers a comprehensive overview of the development of community children’s nursing services, demonstrating the link between the needs of sick children, and changing policy that has encouraged the care of children requiring nursing care at home.

Health perspectives of children with complex care needs The medical management of a condition can clearly be a contributing factor, but is rarely a defining feature of whether care needs are complex. Diehl et al. (1991) in their study of parent’s perceptions considered parents of children with medically complex needs, and found that the complex medical condition was associated with ongoing nursing needs rather than the condition alone. Similarly Hochstadt & Yost (1991) have published a text on the medically complex child, which is an American text reflecting various medical conditions, but the common factor is the requirement for continuing care at home. Regardless of the medical condition, complex care needs are related to service provision, funding, social and educational needs alongside nursing and medical care. Certain rare conditions such as epidermis bullosa or mucopolysaccharide disorders may provide the stimulus for defining needs as complex, but the condition alone does not automatically mean that a child will have complex care needs. Other factors which contribute are nursing needs in the community, medication and nutrition, equipment,

Teare Ch-001.indd 8

1/21/2008 9:55:03 AM


parental support and respite care requirements. Interestingly, oncology conditions where palliative care is required are not typically regarded as complex, possibly due to the fact that they are often well defined, although they have been linked with life limiting conditions; see Box 1.3. Box 1.3

Life limiting conditions

Life limiting conditions have been defined by the Association for Children with Life-threatening or Terminal Conditions and their Families & the Royal College of Paediatrics and Child Health (1997) as Group 1 Life-threatening conditions for which curative treatment may be feasible but can fail Group 2 Conditions where there may be long periods of intensive treatment aimed at prolonging life, but premature death is possible Group 3 Progressive conditions without curative treatment options, where treatment is palliative and may extend years Group 4 Conditions with severe neurological disability which may cause weakness and susceptibility to complications and deteriorate unpredictably Despite the obvious overlap between groups 3 and 4 and many children who are categorised as having complex care needs, there remains a distinction between the work of palliative care services and other children’s community nursing services, with the latter having more responsibility for looking after children with complex needs.

Technology dependence National trends (DH, 2004c) reflect that the survival rate for premature births has increased. The neonatal charity organisation BLISS (2006) suggest that 20 years ago 20% of babies weighing less than 1000 g survived; today, that figure has increased to 80%. However, studies have shown that premature birth is linked to a high incidence of neurological and developmental disabilities, with a greater incidence associated with earlier gestational delivery and very low birth weights (Wood et al., 2005). Contributing factors in the survival of premature neonates are technological improvements in management and treatment, such as

Teare Ch-001.indd 9

1/21/2008 9:55:04 AM

10


surfactant therapy for respiratory distress syndrome, and new ventilatory techniques, along with more sophisticated monitoring equipment. Technology has also resulted in a change of lifestyle for children recovering from severe illness, trauma or congenital defects. The technology that has saved children from death may often become a permanent feature, and has resulted in a specific group of children categorised as ‘technology dependent’ (Kirk & Glendinning, 1999). In their study, Kirk & Glendinning (1999), identified children dependent on technology as ventilator dependent initially, but this has broadened to incorporate other technical aspects of care or technical resources to enable children to live at home. Heaton et al. (2003) refer to the vagueness of the term technology dependent in their study as it incorporates a wide range of medical technology used by children to prevent death or further disability. The devices used range from assisted ventilation to intravenous drug therapy or assisted nutrition via gastrostomy. In addition Kirk & Glendinning (1999) identify that technology dependence can vary according to when children become dependent, whether there are associated disabilities, and whether dependence will be permanent and required continuously or occasionally. The studies and publications of Kirk & Glendinning (1999, 2002, 2004) are widely recognised and acknowledged in the literature referring to children with complex or continuing health care needs, thereby contributing to the recognition and acceptance of the term ‘technology dependent’. Glendinning et al. (2001) carried out a study to try and determine the number of technology-dependent children living at home, so that the costs of caring could be estimated. They found that there was no accepted UK definition for technology dependence, which meant that some severely disabled children or terminally ill children may not be included in data collected about technology-dependent children. Jardine et al. (1999) identified the increasing number of children that required long term ventilation as a group that were dependent upon technology for continuing survival. Improvements in ventilatory care, and increasing experience and acceptance of home care, have paved the way for more children to be discharged home while still receiving ventilatory support. Guidelines to assist with the discharge of children on long term ventilation have been developed (Jardine & Wallis, 1998), incorporating the views of a UK Working Party on Paediatric Long Term Ventilation (Chapter 3 deals with this in more detail). In the past, technology-dependent children would have had to remain in hospital care settings, but the factors noted above have all contributed to the care of children with long term health needs at home,

Teare Ch-001.indd 10

1/21/2008 9:55:04 AM


in preference to secondary care settings. Reasons for this also include recognition that once stable, an acute environment cannot meet the normal growth and development needs of children, Boosfeld & O’Toole (2000) highlight the inadequacy of an acute intensive care unit trying to care for long term ventilated children alongside the pressure of acute and severely ill children.

Social perspectives of children with complex care needs – the disabled child Disability is also one of the main features of children who are identified as having complex care needs, and may be linked with a chronic illness. The DH & DfES (2003) issued practical guidance for professionals working with disabled children, Together from the Start, which used the following definition of disability (see Box 1.4).

Box 1.4

Definition of disability

A child under 3 years of age shall be considered disabled if he/she: 1. is experiencing significant developmental impairment or delays, in one or more of the areas of cognitive development, sensory or physical development, communication development, social, behavioural or emotional development; or 2. has a condition that has a high probability of resulting developmental delay. Source: Together from the Start (DH & DfES, 2003)

In young children, it may be difficult to determine whether impairment will be long term. The child’s condition may improve, so minimising disability. However, some criteria are necessary to establish who may need or benefit from services that can assist and support parents caring for a disabled child. Estimating the numbers of children who are disabled is difficult, due to interpretation of the varying definitions of disability. The Department of Health (2000) estimates that there are 549 800 children under the age of 19 years with special needs, but the use of differing language through ‘special needs’ contributes to the confusion of defining groups of children, and tends to link to education, rather than health or social care.


1/21/2008 9:55:04 AM

12


Respite In terms of service provision, the need for health care and support, or respite care, is often the associated factor which prompts professional groups to identify needs as complex. Roberts & Lawton (2001) carried out a study to look at patterns of extra care needs among severely disabled children and found that extra care needs are considerable, and often not recognised by services. They found that many disabled children required extra care with normal daily activities, but also experienced pain, behavioural problems and medical crises, which necessitated far more time and effort from parents than caring for a child without disabilities. Studies examining support requirements of parents with disabled children (Beresford et al., 1996; Hall, 1996; Sloper, 1999) have highlighted the impact of stress upon families caring for their children. Parents reported that they wanted help related to sleep and behaviour problems, material and financial resources, and respite to allow them a break from caring. Respite care requirement is therefore closely linked to determining a child has needs that are complex for services and parents to manage. Complex care also has a strong connection to multiple nursing needs that a child may require, which can be associated with respite provision for families caring for children. Jackson & Robinson (2003) discuss hospice purpose and function and apply the term complex needs to children who have disabilities linked to nursing needs that require respite provision. The link between complex needs and disabilities from a social service perspective has been linked to respite care and barriers between services or that the family has to overcome to obtain service. Morris (1999) views complexity as an issue for services rather than young people in her study of transition of care from child to adult services. She suggests that the combination of health and social support required by young disabled people presents a challenge to services; therefore the service defines needs as complex from their own perspective of having to overcome difficulties to meet the needs of young people. This view is supported by Watson et al. (2002), who discuss the barriers that families face to get their needs met, particularly when several services are involved in care.

Multi-agency care as a factor contributing to complex care needs of children Robinson et al. (2001) found that families had difficulty obtaining co-ordinated, consistent support from services, and that in some cases


1/21/2008 9:55:04 AM


there was wrangling over funding for care that was required. These issues have been identified in the Children’s NSF (DH, 2004a) with subsequent recommendations for a key worker for families involved with more than one agency, and joint funding of services to disabled children (Wheatley, 2006). This will be discussed further in Chapter 6.

Funding Funding of care required by children can be a contributory factor to defining the needs of children as complex. Difficulties in obtaining sufficient and timely funding to support children with complex needs at home has been reported by Glendinning et al. (2001), who suggest that greater knowledge about numbers of children requiring care could assist with better planning and co-ordination of care. Community trusts have a responsibility to meet the cost of equipment and nursing care that may be required at home; however, delays in discharge from hospital can occur while funding packages are put together. Ludvigsen & Morrison (2003) highlight that paediatric intensive care beds are blocked by children on long term ventilation who are medically stable and ready for discharge. The main barriers to discharge are related to poor organisation of funding to meet recruitment of home care staff, suitable housing and ongoing provision of consumable equipment. The outlay of initial equipment required is often easier to procure than the ongoing costs, due to bureaucracy between local services (Jardine et al., 1999). Long term complex health care was initially funded through the continuing care policy (DH, 1995), which aimed to differentiate between health care and social care. Criteria were developed by local authorities to consider means tested services where some form of payment was required for social care, whereas health care was free. There was no specific consideration for children within this policy, hence the difficulty and disparity of funding for services to children with continuing complex needs. Joint commissioning and pooling of budgets between agencies has been recommended in the Children’s NSF, supported by legislation in the Children Act 2004, to try and overcome the problems experienced by families of children with complex needs, and providers of services. As more children fall into this category of requiring complex care packages, organisation and funding may become less of an obstacle as common practices emerge. Chapter 2 deals in more detail with commissioning and organisation of services to children with complex care needs.


1/21/2008 9:55:04 AM

14


Equipment The provision of equipment in the community to children may be another contributory factor in establishing the needs of children as complex. There are two groups of children that require equipment in the community: those that have an ongoing medical condition, and those that are disabled. There is some overlap between these groups, as a child may be disabled and also have a medical condition, or the condition may lead to long-term disability. Specific medical conditions such as congenital central hypoventilation syndrome result in technology-dependent children, who have a greater requirement for sophisticated equipment to manage their condition. Rachel’s case example requires a ventilator, suction machines, tracheostomy tubes, etc. at home, as part of her care for long term ventilation. While the equipment provision may be relatively straightforward, what complicates matters is the infrastructure required to ensure the equipment can be managed at home. This involves consent and education of the main carers of the child (usually parents), to ensure they are competent to carry out the care using the equipment, but also training and provision of support carers for the parents who cannot be expected to provide 24 hour care to their child. The support carers have to be employed either by health or social services and receive appropriate training and support in the use of the equipment. Therefore, the provision of equipment for discharge of a technology-dependent child becomes more than supply of appropriate machinery. The home environment has to accommodate both the equipment and carers who will be providing ongoing support; this may already be suitable or require housing adaptation. The Children’s NSF recommends that equipment and assistive technology services should include maintenance, insurance and risk management, as part of the care delivered to the child and family. In addition agencies should agree who will provide the necessary supportive care of equipment and technology used (DH, 2004b, Standard 8). Children with disabilities often require a wide range of equipment to assist them with washing, feeding, sleeping, toileting, mobilising and communicating. In some instances the equipment required can be bulky and require specific adaptation to housing to ensure it can be used safely. Lifting equipment in particular and bathroom facilities are often inadequate to meet the needs of disabled children as they grow. Maria’s case example illustrates that as she grows she may require a wheelchair, which may necessitate considerable housing adaptation to accommodate her mobility in a wheelchair. Beresford & Oldman (2002) found


1/21/2008 9:55:04 AM


that many families of disabled children lived in unsuitable housing with problems related to lack of space and difficulties in moving the child around their home. Reasons proposed for the unmet level of need were related to a lack of joint funding between agencies, inadequate assessment and poor collaboration between services. The Department of Health has tried to address these shortcomings through guidance issued to pool budgets for community equipment (DH, 2001) to make it easier for health and social services to integrate equipment requirements. Obtaining ongoing supplies and disposable equipment such as suction catheters, feeding tubes, syringes, etc. has been recognised as a source of stress for families (DH, 2004a), again due to difficulties with funding or communication between professionals. Decision making about issues such as equipment requires careful planning about sources of funding and individual service responsibilities to avoid poor levels of care and meet NSF standards. Provision of equipment in the community can therefore contribute to the concept of complexity when caring for children with specialist or ongoing health care needs.

Risk assessment A final factor that contributes to the identification of needs as complex is the responsibility for administering care or treatment to children in the community. Rhodes (1999) identified disabled children who required invasive clinical procedures from social services as a group that was often unable to access services due to potential fears of litigation. Invasive procedures included naso-gastric feeding, and medication administration. Supported by Barnardo’s, a protocol was suggested (Rhodes, 1999) identifying risks and responsibilities for all organisations that work with children in the community, who have continuing health care needs. Underpinning principles of consent, competence and responsibility are included in written documentation, which identifies a health care assessment and plan for each child, following standardised protocols that are jointly agreed between health and social service organisations. Collaboration between services from organisational level to practical care giving level is essential, and is often the issue that parents complain about in relation to poor communication between agencies (Hall, 1996; Bewley, 2002; Watson et al., 2002). The Common Assessment Framework (DfES, 2006) proposed in the Every Child Matters programme, aims to improve communication between agencies by reducing the


1/21/2008 9:55:04 AM

16


number of assessments carried out, and supporting shared responsibility and agreement for care required. Implicit within shared agreements for care are common risk assessments that can be used by multiple agencies rather than each agency assessing individual risk. However, common working practices between agencies are still in their infancy, contributing to the complex identification of needs for children cared for by multiple services.

Summary Children with complex care needs have been identified as children with disabilities or continuing health care needs who require care from a range of services in the community Social and health policy supports the care of children in the community through recommendations and guidance for joint funding, joint assessment and collaboration between agencies responsible for children Children’s community nurses and other specialist children’s services can provide a resource for families of children with complex needs to co-ordinate management of specific health needs Provision of appropriate respite care and equipment requires negotiation and organisation between services, and may be a contributory factor to identification of needs as complex The diversity of care required by this group of children from varying professional groups presents a continuing challenge to children’s services

Useful website www.everychildmatters.gov.uk/aims/childrenstrusts

References Association for Children with Life-threatening or Terminal Conditions and their Families (ACT) & Royal College of Paediatrics and Child Health (1997) A Guide to the Development of Children’s Palliative Care Services. ACT, Bristol. Association for Children with Life-threatening or Terminal Conditions and their Families (ACT) & Royal College of Paediatrics and Child Health (2003) A Guide to the Development of Children’s Palliative Care Services. Second edition ACT, Bristol.


1/21/2008 9:55:04 AM


Beresford, B., Sloper, P., Baldwin, S. & Newman, T. (1996) What Works in Services for Families with a Disabled Child? Barnardo’s, Ilford. Beresford, B. & Oldman, C. (2002) Housing Matters: National Evidence Relating to Disabled Children and their Housing. The Policy Press, Bristol. Bewley, T. (2002) Care co-ordination? The reality from a carer’s perspective. Paediatric Nursing, 14, 4, 26–29. BLISS (2006) Community Health Professionals’ Information Guide. BLISS, London. Boosfeld, B. & O’Toole, M. (2000) Technology-dependent children: Transition from hospital to home. Paediatric Nursing, 12, 6, 20–22. Bradley, S. (1997) Better late than never? An evaluation of community nursing services for children in the UK. Journal of Clinical Nursing, 6, 411–418. Chambers, R. & Licence, K. (2005) Looking After Children in Primary Care. Radcliffe Publishing, Oxford. Department for Education & Employment (2001) Sure Start. A Guide for 4th Wave Programmes. DfEE Publications, Nottingham. Department for Education & Skills (2004) Every Child Matters: Change for Children. HM Government, London. Department for Education & Skills (2005) An Overview of Cross Government Guidance. HM Government, London. Department for Education & Skills (2006) The Common Assessment Framework. HM Government, London. Department for Education & Skills & Department for Work & Pensions (2006) Choice for Parents, the Best Start for Children: Making it Happen. An Action Plan for the Ten Year Strategy: Sure Start Children’s Centres, Extended Schools and Childcare. DfES, London. Department of Health & Social Security (1976) Fit for the Future. The Report of the Committee on Child Health Services (vol 1). HMSO, London. Department of Health (1988) Community Care: Agenda for Action. The Griffith’s Report. HMSO, London. Department of Health (1995) NHS Responsibilities for Meeting Continuing Health Care Needs. HSG (95) 8, LAC (95) 5. HMSO, London. Department of Health (2000) Quality Protects: Disabled Children, Numbers & Categories. HMSO, London. Department of Health (2001) Community Equipment Services. HSC 2001/008: LAC (2001) 13. Department of Health & Department for Education & Skills (2003) Together from the Start – Practical Guidance for Professionals Working with Disabled Children (Birth to Third Birthday) and their Families. The Stationery Office, London. Department of Health (2004a) National Service Framework for Children. DH, London. Department of Health (2004b) Standard 8 – Disabled Children and Young People and Those with Complex Health Needs. DH, London. Department of Health (2004c) NHS Maternity Statistics, England: 2002–3. DH, London. Department of Health (2005a) Complex Disability Exemplar. National Service Framework for Children, Young People and Maternity Services. DH, London. Department of Health (2005b) Care Pathway for the Discharge and Support of Children Requiring Long Term Ventilation in the Community. National Service


1/21/2008 9:55:04 AM

18


Framework for Children, Young People and Maternity Services. DH, London. Diehl, S., Moffitt, K. & Wade, S. (1991) Focus group interview with parents of children with medically complex needs: An intimate look at their perceptions and feelings. Children’s Health Care 20, 3, 170–178. Emond, A. & Eaton, N. (2004) Supporting children with complex health care needs and their families – An overview of the research agenda. Child: Care, Health and Development 30, 3, 195–199. Glendinning, C. & Kirk, S. (2000) High-tech care: High-skilled parents. Paediatric Nursing, 12, 6, 25–27. Glendinning, C., Kirk, S., Guiffrida, A. & Lawton, D. (2001) Technology-dependent children in the community: Definitions, numbers and costs. Child: Care, Health and Development, 27, 4, 321–334. Hall, S. (1996) An exploration of parental perception of the nature and level of support needed to care for their child with special needs. Journal of Advanced Nursing, 24, 512–521. Heaton, J., Noyes, J., Sloper, P. & Shah, R. (2003) Technology Dependent Children and Family Life. Research Works. Social Policy Research Unit, University of York, York. Hochstadt, N. & Yost, D. (1991) The Medically Complex Child. Harwood Academic Publishers, Philadelphia. House of Commons Health Committee (1997) Third Report. Health Services for Children and Young People in the Community: Home and School. The Stationery Office, London. Jackson, P. & Robinson, C. (2003) Children’s hospices: Where do they fit? Critical Social Policy, 23, 1, 103–112. Jardine, E. & Wallis, C. (1998) Core guidelines for the discharge home of the child on long term assisted ventilation in the United Kingdom. Thorax, 53,

762–767. Jardine, E., O’Toole, M., Paton, J. & Wallis, C. (1999) Current status of long term ventilation of children in the UK; questionnaire survey. British Medical Journal, 318, 295–299. Kirk, S. & Glendinning, C. (1999) Supporting Parents Caring for a TechnologyDependent Child. National Primary Care and Research Development Centre, University of Manchester. Kirk, S. & Glendinning, C. (2002) Supporting ‘expert’ parents – professional support and families caring for a child with complex needs in the community. International Journal of Nursing Studies, 39, 625–635. Kirk, S. & Glendinning, C. (2004) Developing services to support parents caring for a technology-dependent child at home. Child: Care, Health and Development, 30, 3, 209–218. Ludvigsen, A. & Morrison, J. (2003) Breathing Space: Community Support of Children on Long Term Ventilation – Summary. Policy and Research Unit, Barnardo’s, Essex. Ministry of Health (1959) The Welfare of Children in Hospital – Report of the Committee. (Chairman Sir H. Platt) HMSO, London. Morris, J. (1999) Hurtling Into a Void: Transition to Adulthood for Young Disabled People with Complex Health and Support Needs. Pavilion Pub/Joseph Rowntree Foundation, York.


1/21/2008 9:55:04 AM


NHS Executive (1996) Child Health in the Community. A Guide to Good Practice. The Stationery Office, London. Rhodes, A. (1999) Promoting Partnership. Supporting Disabled Children who Need Invasive Clinical Procedures. A Barnardos’s Guide to Good Practice for Family Support Services. Barnardo’s, Essex. Roberts, K. & Lawton, D. (2001) Acknowledging the extra care parents give their disabled children. Child: Care, Health and Development, 27, 4, 307–319. Robinson, C., Jackson, P. & Townsley, R. (2001) Short breaks for families caring for a disabled child with complex health needs. Child & Family Social Work, 6, 67–75. Sloper, P. (1999) Models of service support for parents of disabled children. What do we know? What do we need to know? Child: Care, Health and Development, 25, 2, 85–99. Watson, D., Townsley, R. & Abbott, D. (2002) Exploring multi-agency working in services to disabled children with complex health care needs and their families. Journal of Clinical Nursing, 11, 367–375. Wheatley, H. (2006) Pathways to Success. Good Practice Guide for Children’s Services in the Development of Services for Disabled Children. Council for Disabled Children, London. While, A. (1992) Consumer views of health care: A comparison of hospital and home care. Child Care Health and Development, 18, 2, 107–116. Whiting, M. (1998) Expanding community children’s nursing services. British Journal of Community Nursing, 3, 4, 1. Whiting, M. (2005) 1888–2004: A historical overview of community children’s nursing. In: Textbook of Community Children’s Nursing (eds A. Sidey & D. Widdas), 2nd edn, pp. 17–41. Elsevier, Edinburgh. Winter, A. & Teare, J. (1997) Construction and application of paediatric community nursing services. Journal of Child Health Care, 1, 1, 24–27. Wood, N., Costeloe, K., Gibson, A., Hennessy, E., Marlow, N. & Wilkinson, A., for the EPICure Study Group (2005) The EPICure study: Associations and antecedents of neurological and developmental disability at 30 months of age following extremely preterm birth. Archives of Disease in Childhood Fetal and Neonatal Edition 90, 134–140.


1/21/2008 9:55:05 AM

2

Commissioning Care of Children with Complex Needs Elizabeth Thornley

Key Points Joint commissioning opportunities Universal children’s services Continuing care of children Skills required by children’s community nurses to facilitate the commissioning process

Introduction The increasing use of technology is producing diverse groups of children with complex health care needs. Children are referred for services from a multiplicity of sources, and primary care trusts struggle to meet the ever changing needs of this group of children. Traditionally services for these children have been provided in an ad hoc way, and resourced in a similar way responding on an individual basis. This chapter will focus on the discussion of the provision and commissioning of services for children with complex health care needs from a strategic and practical point of view. However variations at local level may be influenced by service initiatives and local interpretation of national policy. A case example will be used to illustrate some of the relevant issues; names have been changed to protect confidentiality. Caring for Children with Complex Needs in the Community © 2008 Blackwell Publishing. ISBN: 978-1-405-15177-1



21

1/21/2008 9:55:26 AM

22


Continuing care The Continuing Health Care guidance (Department of Health (DH), 1995) did not apply to children in the same way as adult services, as it referred to a difference between health and social care for patients discharged from hospital. The policy focused mainly on elderly patients, which meant that children who required continuing health care at home demanded the creation of individual packages of care. These were often lengthy processes resulting in time consuming activity to negotiate with service providers. As a result many children had to stay in acute hospital services longer than medically necessary, with the resulting burden on both the family and hospital services (Margolan et al., 2004). Concern about the lack of a concise framework for continuing care for children with long term health care needs has led to the development of the National Framework for NHS Continuing Care and NHS Funded Care, with links between the proposed adult framework and the equivalent children’s services for continuing care. It is anticipated that a Framework for Children will be published in 2007. Regional developments will include the pilot of a tool to assess eligibility criteria for continuing care.

Commissioning services Commissioning is the process of improving health and meeting health needs through planning and purchasing health services with the resources available (Jones & Tatman, 2005). The Children Act 2004 identifies that all children’s service authorities have a duty to promote co-operation with all partner agencies, to improve the well-being of local children and young people. Although children’s trusts are not specifically directed, there is an expectation that local authorities will use this legislation to prompt integration of budgets through processes which encourage development of a children’s trust, and this will be discussed later in the chapter. Children’s health services at present are commissioned jointly by the primary care trust, hospital trust and social services through a joint commissioning panel. Recent guidance from the Department for Education and Skills (DfES) and the Department of Health based on the Every Child Matters programme has outlined a framework for the joint commissioning of services for children and young people (DfES & DH, 2006) (see Figure 2.1).


1/21/2008 9:55:27 AM

Commissioning Care of Children with Complex Needs 23

Look at outcomes for children and young people Monitor and review services and process

Plan for workforce and market development

Commission – including use of pooled resources

Decide how to commission services efficiently

Look at particular groups of children and young people

Develop needs assessment with user and staff views

Identify resources and set priorities

Plan pattern of services and focus on prevention

Figure 2.1 Process for joint planning and commissioning (DfES & DH, 2006).

The framework aims to give guidance to commissioners of services on how joint planning, and delivery of services can improve outcomes for children and young people by unifying the service provision. It is aimed at all services that work with children and young people in each locality, so is not prescriptive but provides an overview of how the principles of leadership, strategic planning, accurate needs assessment and integration of local and regional services can make the best use of resources. The process described in the framework of joint commissioning (DfES & DH, 2006) starts with the assessment of children and young people’s needs in the local area, based on data gained from a variety of sources; examples are education, social services, youth services, health services and voluntary agencies, although many other sources of information could be used. The data provide a baseline of well-being for children and young people and should be used to assess current and future needs, and provide the basis for plans to improve children’s


1/21/2008 9:55:27 AM

24


outcomes in line with the Every Child Matters key outcomes (DfES, 2004). Particular groups of children may be identified in this process who require additional support; children with complex care needs are an example of a group that may require particular services or support to meet their needs. Analysis of the data collected and collaboration with all stakeholders in children’s services, including users will lead to development of a Children’s and Young People’s Plan. This should be agreed by all partner organisations and leaders of local authorities, and be mapped against outcomes and resources available. The mapping exercise (www.childhealthmapping.org.uk) is essential to the commissioning process as it shows which services should be commissioned, services which may be commissioned differently, and those that may not be required. Joint commissioning requires a single commissioning unit to decide how resources and budgets can be pooled to include all agencies, and plan the best way to commission all services required to meet the needs of children, according to the Children’s and Young People’s Plan. Case example

Antonia

Antonia was born at 31 weeks gestation with multiple abnormalities which required surgery at a tertiary specialist centre. She required assisted ventilation for a period, and subsequently acquired some degree of brain damage due to cerebral anoxia. Antonia is now 4 months old and is technology dependent; she has a tracheostomy, gastrostomy and requires continuous oxygen therapy. In addition, she has recently developed seizures. She has now been transferred from the specialist neonatal unit to the children’s ward of the local hospital trust and her parents are keen to take her home. They live in their own privately owned home but will need support to care for Antonia at home.

Commissioning services for Antonia The National Service Framework (NSF) for Children Standard 8 requires that: ‘children and young people who are disabled or who have complex health needs receive co-ordinated, high quality child and family-centred services which are based on assessed needs’ (DH, 2004a, p. 5).


1/21/2008 9:55:27 AM


Standard 7 of the Children’s NSF – Children in Hospital (DH, 2003a) also states that: ‘Hospital stays should be kept to a minimum through the co-ordinated delivery of care…Where needs are more complex, detailed planning may be required…’ (DH, 2003a, p. 19). In this case example it is necessary therefore, that the commissioning process is started at the earliest opportunity, especially if the family have a need to organise childcare for their child. In the current social climate, the birth of a child with complex health care needs can be both a shock to the family and a financial disaster, due to caring responsibilities that may prevent full time employment for mothers in particular (Dobson & Middleton, 1998). The Early Support Programme (DfES & DH, 2004) promotes the early completion of a childcare support plan to help the family cope with their child at home and receive appropriate services at the earliest opportunity. A key worker or lead professional, should be appointed at the earliest opportunity to facilitate communication between the family and the agencies that would need to be involved. This can be done at an early multi-disciplinary meeting held either on the children’s ward or at a child development centre; see Box 2.1. Box 2.1

Antonia (4 months) Inpatient on children’s ward

¢ ¢ Appointment of key worker ¢ Early support/child care support plan Referral to multi-agency system

The key worker at this stage could be: Children’s community nurse Health visitor Community neonatal nurse The predominant role of the key worker is to promote communication between the family and the agencies that will be involved to support the family at home.


1/21/2008 9:55:27 AM

26


Choice of the key worker will be influenced by acceptability to the family, links to the service that is most involved with the child, along with experience and competence in carrying out the key working role in particular situations (DfES & DH, 2003).

Needs assessment In order to provide safe, appropriate services it is necessary to carry out a needs assessment to inform the commissioner of the service design for children with complex health care needs. Needs assessment has arisen in community nursing due to links between services and the community in which the service operates, in terms of environmental issues, caseload and referral criteria. Assessment of needs help to: develop an accurate picture, avoid duplication of service provision, provide data to develop a business case, and create a basis for evaluation (Hughes et al., 2005). Children’s community nurses as a professional group that delivers services in a community setting may therefore be involved in compiling a profile of their local area that identifies demographic and epidemiological information related to the health needs of children (Hughes et al., 2005). Profiling can prioritise health needs in a locality and assist with targeting existing resources as well as identify gaps in service provision. Needs assessment is therefore a strategic exercise that is carried out to determine the requirement for service provision, which may be carried out for an individual child, but can be used as a template to deliver services to others with similar needs.

Writing a business case Individually arranged packages of care can form part of an overall commissioning strategy, although they have typically occurred in the past due to the unique nature of care required. However the uniqueness of these cases is disappearing as more children with continuing care and complex needs are becoming more common across all areas of the country, leading to an expectation that services will have systems in place to deal with care requirements. A business case may therefore form the basis of a request for funding from commissioning organisations, and is a skill required by children’s community nurses in particular, when children require additional services in order to be discharged home. The business case will alert managers in the primary care trust of the


1/21/2008 9:55:28 AM


individual needs of a child being discharged, and how these needs may be met in the community setting. See Box 2.2 for the outline of a management report that will detail the business case. Box 2.2

Management report

Background information include evidence-based research findings to support the need for service outline existing service provision that can support this development Aims of the service development why the service is required who will be involved Resources required Staffing numbers of staff and ratio of staffing, e.g. ratio of health/social service provision Equipment major equipment purchases should be negotiated to include a servicing/maintenance contract and include a depreciation cost Consumables this can be shared between the primary care trust and the family general practitioner Summary and recommendations probably the most important part of the report as it will form the basis for future progress

When writing a business case for the development of a service, it is necessary to use ‘contract currency’: this means using terms that the commissioners will understand, and highlighting the costs and benefits to the primary care trust. For example, in this case example it is more costly to the primary care trust to have Antonia in hospital than to nurse her at home. Children’s community nurses will need to develop more awareness of the strategic management of children’s services, but are in a unique position of working with families and having the knowledge and skills


1/21/2008 9:55:28 AM

28


to make a joint assessment of health, social and emotional needs of the child and family. Noyes & Lewis (2005) give a good example of the information that could be used in a business plan for the estimated costs of care of a ventilated child discharged into the community. Section 3.1.5 of the Hospital to Home guidelines for ventilator dependent children (Noyes & Lewis, 2005) details the costs of a care package over a 12 month period for an individual child and also accumulated costs of several children. Local practitioners may use this sort of information as a guide which they can supplement with their knowledge of local needs and existing service provision.

Integration of services Recent legislation has seen the integration of services for children with the appointment of a director of children’s services in each local authority. This allows single responsibility for education and social services and delegated functions from other areas, for example health, housing and leisure (Mountford & Widdas, 2005). A feature of this new organisation to ensure universal services for all children is the development of children’s trusts. A children’s trust enables organisations to join together in a local partnership to commission and deliver services to children, particularly those who have a multiple needs which have to be met by health, education and social services (DH, 2003b). Evaluation of the pathfinder children’s trust sites (Wheatley, 2006) has provided evidence of good practice in the development of integrated services for children. Models of commissioning varied across the sites to meet local needs, but the development of children’s trusts has created more opportunities to pool budgets under the joint commissioning strategy. Although the structure of children’s trusts will vary, the Department of Health (2003b) has identified some key features of a children’s trust, which include Appointment of a director of children’s services Co-located services Multi-agency teams Key worker system Single commissioning function with pooled budgets Joint policies and guidelines The Children’s NSF (DH, 2004b) requires services to improve access for all children according to their needs, particularly by co-locating services.


1/21/2008 9:55:28 AM


The children’s trust is an ideal vehicle for this to happen as strategic collaboration could encourage practical collaboration through joint management of mixed teams of professionals.

Provision of services It is interesting to note that, although health policy has consistently identified the need for robust, cohesive community services for children, there are still areas of the country that have no children’s community nursing service (Royal College of Nursing, 2004). This can be a problem for children with ongoing health or nursing needs, due to lack of adequate service provision. Care may be provided by adult services or not at all, leaving parents to provide care without support in the community. For children who have complex health care needs the children’s community nursing team is the basis for facilitating the early discharge of children from hospital. The skills that children’s community nursing teams can offer are: Links to inpatient units Ability to understand the consequence of a particular health need Understanding of whole family’s needs Awareness of community services available Links to a range of community service provision The first step to providing a service for Antonia at home is to organise a multi-agency discharge planning meeting, to which the parents are invited. Figure 2.2 illustrates the process of planning the discharge, to be effective and safe it must be planned. Prior to eventual discharge all agencies will have to agree that it is safe for Antonia to be at home. The provision of care packages is costly and time consuming and can delay discharge so it may be necessary to provide some interim care. This may involve primary care trusts and their children’s commissioners considering the possibility of having a rapid response service to allow staff to respond and provide care that will enable children to go home earlier. A rapid response model is based on the availability of trained carers who work in the children’s community team as extras, who can respond at short notice to enable a child to go home with support for a short time to enable parents to acclimatise to being at home with their child. They may be able to speed up discharge whilst waiting for resources to become available, or can give more care during periods of increased need on a short term basis, rather than the child being admitted to hospital.


1/21/2008 9:55:28 AM

30


Discharge planning meeting Social worker–children with disabilities team health visitor occupational therapist consultant paediatrician children’s community nurse named nurse on ward parents

Equipment needs Family’s need for support Respite care Nursing needs

Home modifications Storage of equipment Financial considerations (including disability living allowance)

Early support plan Business case to Primary Care Trust commissioner for children’s services Equipment order

Home assessment (children’s community nurse/occupational therapist/social services) Risk assessment Training of parents to manage invasive procedures

Home visits Antonia to spend short periods at home

Figure 2.2 Discharge planning process for Antonia.

The staff who support children with complex health care needs and their families need to be able to work alongside multi-agency professionals. Children’s commissioners therefore have to consider the skill mix of teams who provide community services. The leaders of children’s community nursing services should be nurses who hold an appropriate children’s nursing qualification but can lead teams that incorporate assistant practitioners and health care support workers who can be trained to the high standards of care required, and more importantly, supervised and monitored by skilled community children’s nurses. The assistant practitioner role in some children’s community


1/21/2008 9:55:28 AM


nursing teams is designed to adapt to working across both health and social care environments. An additional challenge for care providers is providing support for inclusive childcare. Inclusive childcare, was a feature of the Sure Start initiative (www.surestart.gov.uk) and is now reflected in Every Child Matters (DfES, 2004), where the role of the Children’s Community Nurse has widened to support children and their families. Many parents need to return to paid employment, meaning that children with more complex health care needs are being placed in early years childcare settings. Staff in these settings, therefore need training and support from community services, to care for these children.

Evaluation of service provision Primary care trusts, through their commissioners, have a duty to monitor and evaluate all commissioned services. This is done through the regular monitoring of outcomes and targets for each service. In the case of care packages, the children’s community nurse will need to regularly review the care needs of the family as these will change over time. Joint area reviews are a recently introduced system for the monitoring of all services for children against the key outcomes from Every Child Matters (DfES, 2004). They aim to ensure consistency of standards throughout partner agencies who provide services for children, focusing on how local services are working together to achieve local outcomes. Particular attention will be paid to areas of weakness and to services dealing with children who are disabled, have learning difficulties or require safeguarding (Ofsted, 2007). In addition the importance of consumer involvement in service evaluation can not be overlooked. Families should be involved in the planning and evaluation of services for children, and forums for this to occur need to be established within primary care trusts. On a more practical level, children’s community nurses can devise satisfaction surveys which parents can be asked to complete, and this can be used as part of the service evaluation.

Conclusion The focus of this chapter has been the commissioning of services for children with complex health care needs. Until recently this has been in the remit of the Joint Commissioning Panel which bridges health,


1/21/2008 9:55:28 AM

32


social care and education services. However since the appointment of a National Clinical Director for Children, primary care trusts are appointing children’s commissioners, who can collate information on the range and specification of services required for children with complex health care needs. This is bringing about a welcome change in the way children’s services are commissioned. Scenarios like the one cited as a case example are presenting every day, as more children with complex needs are surviving birth due to technological intervention. Services will have to respond to these challenges, through the continuing integration of children’s services. Children’s community nurses have the knowledge and skills to work alongside multi-agency professionals caring for children with complex health care needs and their families. Government legislation that includes the National Service Framework (2004), Every Child Matters (2003) and the Framework for the Joint Planning of Children’s and Young People’s Services (DfES & DH, 2006) will continue to guide the commissioning of services and introduce monitoring and review strategies. New initiatives that foster multi-agency working include children’s trusts, co-location of multiagency teams and development of the lead professional (key worker) role. Robust information sharing systems will need to evolve to ensure that families receive appropriate services and children’s welfare is safeguarded. Children’s community nurses, with their highly skilled practice base, are in a unique position to influence development of service provision and need to develop their skills in needs assessments’ and presenting information to commissioners, to ensure children with complex health care needs are considered as a specific group for allocation of services.

Summary Multi-agency collaboration is necessary for both commissioning and delivery of services to children with complex needs Individual business cases can assist with commissioning services to a wider group of children with similar needs Children’s community nurses can contribute to the process of reviewing and commissioning services for children with complex needs in the community


1/21/2008 9:55:29 AM


Useful websites National Child Health and Maternity Service Mapping Exercise. Available at www.childhealthmapping.org.uk www.surestart.gov.uk

References Department for Education and Skills & DH (2003) Together from the Start. Practical Guidance for Professionals Working with Disabled Children (Birth to Third Birthday) and their Families. DfES, London. Department for Education and Skills (2004) Every Child Matters: Change for Children. HM Government, London. Department for Education and Skills & DH (2004) Early Support; Professional Guidance. DfES, Nottingham. Department for Education and Skills & Department of Health (2006) Framework for the Joint Planning of Children’s and Young People’s Services. DfES & DH, London. Department of Health (1995) NHS Responsibilities for Meeting Continuing Health Care Needs. HSG (95) 8, LAC (95) 5. HMSO, London. Department of Health (2003a) Standard 7 – children in hospital. In: National Service Framework for Children. DH, London. Department of Health (2003b) Children’s Trusts. The Stationery Office, London. Department of Health (2004a) Standard 8 – disabled children and young people and those with complex health needs. In: National Service Framework for Children. DH, London. Department of Health (2004b) National Service Framework for Children. DH, London. Dobson, B. & Middleton, S. (1998) Paying to Care: the Cost of Childhood Disability. York Publishing Services (Findings 748). Hughes, J., Sidey, A., Widdas, D. with a contribution from S. Jones & M. Tatman (2005) Needs analysis and profiling in community children’s nursing. In: Textbook of Community Children’s Nursing (eds A. Sidey & D. Widdas), 2nd edn, pp. 197–206. Elsevier, Edinburgh. Jones, S. & Tatman, M. (2005) Strategic planning and commissioning of services. In: Textbook of Community Children’s Nursing (eds A. Sidey & D. Widdas), 2nd edn, pp. 173–182. Elsevier, Edinburgh. Margolan, H., Fraser, J. & Lenton, S. (2004) Parental experience of services when their child requires long-term ventilation. Implications for commissioning and providing services. Child: Care, Health and Development, 30, 3, 257–264. Mountford, S. & Widdas, D. with contribution from S. Linter (2005) A ‘new’ National Health Service. In: Textbook of Community Children’s Nursing (eds. A. Sidey & D. Widdas), pp. 43–52. Elsevier, Edinburgh. Noyes, J. & Lewis, M. (2005) From Hospital to Home. Guidance on Discharge Management and Community Support for Children Using Long-Term Ventilation. Barnardo’s, Essex.


1/21/2008 9:55:29 AM

34


Ofsted (2007) Joint Area Review of Children’s Services from April 2007. Every Child Matters. Ofsted, London. Royal College of Nursing (2004) Directory of Community Children’s Nursing Services, 16th edn. RCN, London. Wheatley, H. (2006) Pathways to Success. Good Practice Guide for Children’s Services in the Development of Services for Disabled Children. Council for Disabled Children, London.


1/21/2008 9:55:29 AM

3

Caring for Technology-Dependent Children Who Require Respiratory Assistance Jean Teare

Key Points Assisted respiration incorporates caring for children who require long term ventilation, tracheostomy care, or are oxygen dependent at home Multi-agency community services are responsible for supplying equipment, resources and specialised care support to technology-dependent children and families Caring for technology-dependent children imposes social constraints on the normal activities of parents and families

Introduction Technology dependency, along with complex care needs is a difficult term to define. Glendinning et al. (2001), refer to lack of an accepted UK definition of technology dependence, but suggest it would include children who need nursing care that involves mechanical or technical equipment. The needs of this diverse group of children are varied according to many factors that include how often technology is required, and whether it is a temporary or continuous feature of a child’s life. Children who require parenteral nutrition, haemodialysis and intravenous drugs could all be included as technology dependent, but for the purposes of this chapter, technology dependence will be related only to Caring for Children with Complex Needs in the Community © 2008 Blackwell Publishing. ISBN: 978-1-405-15177-1



35

1/21/2008 9:55:50 AM

36


care and equipment that is required to assist children with respiration. This will include home assisted ventilation, oxygen therapy, and children who have a tracheostomy.

Assisted respiration Respiratory support or assistance is required when the respiratory system is not able to provide enough oxygen to the cells of the body, or remove waste carbon dioxide. The causes of respiratory failure vary, but are basically due to Impaired control of respiration from the nervous system Mechanical disruption of the respiratory system – due to neuromuscular disorders, trauma or infection Abnormality of lung tissue or respiratory system It is important to determine the underlying cause of respiratory failure to consider whether short or long term respiratory support will be required. Support refers to any intervention that increases the efficiency of respiration, or reduces the effort required by the child to breathe (Coleman et al., 2007, p. 224). Respiratory support may be commenced in emergency situations as a life-saving procedure, or electively to prevent deterioration of a child’s condition. It can also vary from administration of oxygen, to maintenance of the airway through a tracheostomy or artificial ventilation. In relation to children with complex care needs, respiratory support tends to be a long term feature of their care, rather than an emergency procedure. It may not be a permanent feature, but as a long term health care need, will usually be associated with the normal lifestyle of the child and therefore incorporate care at home or school from community services. The rights of children who have ongoing health needs to lead ordinary lives is articulated through various guidelines and legislation, which set out the responsibilities of health, social and education services. The most recent and comprehensive guidance is situated in the Every Child Matters: Change for Children programme (www.ecm.gov.uk), which outlines five basic outcomes to reduce inequalities and help children achieve health and well-being. The aim is for every child to have sufficient support whatever the circumstances to achieve the key outcomes. The Children’s National Service Framework, Standard 8 (Department of Health, 2004a) gives guidance for health service commissioning, and multi-agency working practices that are aimed at


1/21/2008 9:55:51 AM

Caring for Technology-Dependent Children 37

providing seamless services to disabled children and those with complex needs. This includes discharge from acute settings for children with continuing health needs due to respiratory support requirements, and provides a policy background to ensure that community services and finances are provided to meet their needs. Case studies of children requiring long term ventilation, tracheostomy care and oxygen dependency will be used to illustrate some of the key issues and latest evidence based guidance for care.

Ventilated children Sources of information regarding care of long term ventilated children are available on the UK Children on Long Term Ventilation website (www.longtermventilation.nhs.uk) and in the Department of Health (DH) exemplar (DH, 2005), which outlines a care pathway for a long term ventilated child. The aim of these documents is to share information and ensure professionals have access to sources that can be used to improve and deliver care to ventilated children. Jardine & Wallis (1998, p. 762) define long term ventilation as ‘Any child who when medically stable, continued to need a mechanical aid for breathing after an acknowledged failure to wean, or are slow to wean, 3 months after institution of ventilation.’ Artificial ventilation provides support to ensure a mixture of oxygen and air is moved into the lungs either by controlling breathing or supporting the respiratory effort made by the child. It may be achieved invasively through the use of an airway tube (endotracheal or tracheostomy), or non-invasively using a face mask (Coleman et al., 2007). There will also be a variation according to how long ventilation is required; some children only require ventilatory support when asleep (Noyes & Lewis, 2005), while others may require continuous or intermittent support when awake and asleep depending on their medical condition. Recent studies (While et al., 2004; Jardine et al., 1999) refer to increasing numbers of long term ventilated children due to improvements in medical technology, leading to long term survival of children. Portable medical technology has enabled the transfer of children from hospital to home, but this is not always a straightforward procedure, due to discharge processes. Ludvigsen & Morrison (2003) carried out a literature review of long term ventilated children and found many children spent prolonged periods in hospital due to lack of supportive services to


1/21/2008 9:55:51 AM

38


organise discharge and assist families to care for children at home. Noyes & Lewis (2005) also refer to the unco-ordinated nature of implementing guidelines to discharge long term ventilated children into the community. Some areas have well-established systems and processes, while other areas have yet to consider how they will provide care to this group of children.

Care required by long term ventilated children Care required by children and families will vary according to the individual needs of the child in their normal social environment. Some children will require 24 hour support and care, while others will need minimal supervision and support. Margolan et al. (2004) carried out a study looking at care packages given to 15 families who had children using long term ventilation. The number of hours of support families needed varied from 168 hours per week (24 hour care) to only 2 hours per week. This will obviously impact upon the cost of home care depending on the hours of care required and type of carer, trained nurses being more expensive to employ than home carers. Noyes & Lewis (2005) present financial examples of the cost of care packages for ventilated children in the community, with a breakdown of staffing and other costs. Individual costs will vary depending on how much support is required from professionals and how much care is given by families. While et al. (2004) suggest home care provides a considerable saving to the NHS budget, but with resulting personal costs to families in terms of stress and financial pressures. This is supported by other studies that have examined parental views of caring for children at home (Kirk & Glendinning, 2004; Heaton et al., 2003). Parents in these studies felt that the emotional cost of caring for their children was not always taken into account by professionals or the impact on their family lives, as they were not able to participate in many normal activities due to their caring role. The guidance for discharge of long term ventilated children (Noyes & Lewis, 2005) recommends a multi-disciplinary assessment using the Common Assessment Framework tool (Department for Education & Skills, 2006), to ensure the process includes consideration of the child and family’s views and also draws upon professional expertise of what realistically is required to ensure the child is cared for safely. Variations will exist in the type of package of care required by the child and family, but will be based around the following factors identified in the guidelines for discharge (Noyes & Lewis, 2005); see Box 3.1.


1/21/2008 9:55:51 AM


Box 3.1 Factors identified in the guidelines for discharge Complexity of the child’s needs Level of local expertise of NHS staff concerning children with complex needs Provision and capacity of local public services Local commissioning policy and practice Local service agreements Local coverage by voluntary and private organisations Financial considerations Noyes & Lewis, 2005, p. 44

Case example

Ventilated child

Simon is 7 years old and has spinal muscular atrophy (SMA) type II, which is an inherited condition affecting 1 in 6000, although 1 in 40 people are genetic carriers of the condition (www.fsma.org). Motor neurones throughout the body are affected resulting in muscle weakness which gets worse as the child grows, leading to weakness and deformity of the spine which compromises the respiratory system. Type II SMA is usually diagnosed by the age of 2 years due to late achievement of developmental milestones. The child may be able to sit unsupported, but may need help to stand and will usually require some assistance with mobility. They have weak respiratory muscles, have difficulty coughing, and may not be able to maintain their oxygen levels when asleep as they are unable to take deep breaths. Simon has two brothers, 5-year-old Kevin who is healthy and 3-year-old Tom who also has SMA type II. He lives with his mother who is a single parent in a purpose built bungalow that allows wheelchair access to all rooms, and includes hoist facilities in the bedroom and bathroom.

The children’s community nursing team have been involved with Simon and his family since his diagnosis at the age of 2 years. His condition has gradually deteriorated over the years and he now requires respiratory support via face mask ventilation. He has been using night time ventilation for 3 years so he and his family are accustomed to his care requirements. Physically he is quite frail and cannot mobilise


1/21/2008 9:55:51 AM

40


unaided. He requires help with washing, dressing, toileting and is confined to a wheelchair. He can take some oral diet and fluids, but this is minimal, therefore he has nutritional supplements overnight via a gastrostomy and enteral feed pump. Cognitively his development is normal, but due to his physical disabilities he is unable to attend a mainstream school in his area, so he is currently attending a special education school. Simon requires ventilatory support every night, and occasional support during the day when he is unwell. He has an individual care pathway that indicates the need for ventilation according to particular signs and symptoms, so his carers can easily recognise when he requires ventilatory assistance. This is an important feature of his care plan, as it provides information and support for carers to help them recognise deterioration in his respiratory effort and ensures Simon’s safety. The package of care that Simon requires has been co-ordinated by the children’s community team based on a full assessment of Simon’s needs from a nursing, medical, physiotherapy, social services and educational perspective. Noyes & Lewis (2005), suggest there are two main parts to the assessment process, based on agreement with the child and family of their needs from their point of view, and planning how to support the child and family to achieve these outcomes. The aim of the assessment is for Simon and his family to manage his condition and care, with minimum dependency on services. Care is therefore negotiated according to what Simon and his mother need to cope with all his care requirements. Simon’s mother finds it difficult to cope with Simon’s condition, particularly as she has a younger son with the same condition, even though he does not have health care needs at present. The demands of looking after 3 children alone are daunting, especially when Simon requires so much assistance with all his daily activities. At present 10 hours of night time support from carers is given for 4 nights per week (although more can be given if Simon is unwell or his circumstances change), and 2 hours of day time support is given for 5 mornings per week. This ensures Simon has help to get up and get ready for school so that his mother can look after the other two boys. In school Simon has his own carer supplied by the education services, to assist with toileting, feeding and occasional suction. Social services provide a family support worker who visits weekly to offer support to Simon’s mother; the family also have a named social worker who visits regularly. A play specialist works with Simon and his brothers, from the children’s community team and the key worker visits weekly. Physiotherapy is provided twice weekly, while respite


1/21/2008 9:55:51 AM


care is provided by the local children’s hospice as part of Simon’s care package for 1 week every 4 months The package of care provided to Simon illustrates one of the key factors of caring for technology-dependent children, which is the intrusion of technology into the lives of children and families. Parents take on a different caring role as they learn professional skills of ventilator care, which may involve suction, maintenance of the airway and associated monitoring skills. Glendinning & Kirk (2000) refer to high-skilled parents who become experts in the care of their child’s medical condition, which involves full time care with no time off. Their research indicates that families’ lives were often dominated by technology which altered their home circumstances and prevented normal social activities outside the home. Heaton et al. (2003) also found in their study of technology-dependent children that caring for these children involved restructuring the time commitments and demands of the whole family around technological care requirements of the child. Wang & Barnard’s (2004) review of the literature of caring for technology-dependent children at home supports the view that the home environment is disrupted by medical equipment, changing the meaning of home from a place of comfort to a place where professionals can intrude and the physical environment is altered by machinery. Lack of privacy is an issue (Coffman, 1995) that has to be balanced with the need for support. Negotiation of care is therefore vital between professionals and parents to ensure the integrity of the home as a place of security and comfort for the family is not compromised. Carers working with Simon have to be trained according to local policy and guidelines in the skills necessary to care for ventilated children. Noyes & Lewis (2005) set out guidance for recruitment and training of carers to meet the needs of long term ventilated children, suggesting that carers may carry out complex procedures and care, as long as they are supported by appropriate protocols. This would ensure that carers work within their limits in terms of knowledge and experience. Parents may be involved in interviewing potential carers as part of the recruitment process in some areas, which has strengths of establishing good relationships with parents but may raise unrealistic expectations if carers leave, or work with more than one child or family. It is important that recruited carers receive an educationally sound training programme with good support from a lead nurse that supervises practice and updates them on a regular basis (Noyes & Lewis, 2005). The long term ventilation working party group have examples of best practice guidance, and training programmes for carers on their website (www.longtermventilation.nhs.uk) that may be downloaded.


1/21/2008 9:55:51 AM

42


Children with tracheostomies A tracheostomy is an artificial opening into the trachea through the neck, which provides a channel for respiration and removal of tracheobronchial secretions, when the child cannot breathe normally via the nose and mouth (Hutchins & Wilson, 2006). It may be carried out in an emergency situation due to upper airway obstruction, but is increasingly being carried out due to long term medical conditions or ventilator dependence in developed countries (Trachsel & Hammer, 2006). Indications for tracheostomy (see Box 3.2) include: Box 3.2

Indications for tracheostomy

Congenital anomalies Trauma Infection Foreign body Basically the cause falls into two groups – conditions that cause upper airway obstruction, and medical conditions that result in weakness affecting respiratory muscles and control of breathing. In this latter group tracheostomy is linked to long term ventilation. A tracheostomy tube is inserted into the stoma in the neck to keep the artificial airway open and may vary in type and size according to the child’s physiological and medical condition. The specialist consultant will be responsible for selecting the sort of tracheostomy tube necessary for each individual child. Tubes may be plastic or metal, and may be cuffed or uncuffed. Children typically have an uncuffed tracheostomy tube due to their physiology, where the cartilage, muscles and tissues of the neck are softer and more pliable than adults (Wilson, 2005), so cuffed tubes could cause further narrowing of the trachea. The tracheostomy tube usually consists of three parts: see Box 3.3. Box 3.3

Tracheostomy tube

Hub – the outside opening of the tube which is shaped to allow connection of other equipment Neck flange – consists of two openings to allow tapes to be attached and rests on the child’s neck Cannula – the curved tube which is inserted into the trachea (Wilson, 2005)


1/21/2008 9:55:51 AM


Care required by children with tracheostomies The main aim of tracheostomy care is to ensure the airway remains clear, which will necessitate tracheal suction. The frequency of suction will vary dependent on the age of the child, viscosity and amount of secretions (Hutchins & Wilson, 2006). Buglass (1999) suggests suction of tracheostomies should not be done routinely, but should be carried out as necessary for the individual patient. Humidification may be required to keep secretions thin and aid suction of secretions. Suction of the tracheostomy tube prevents accumulation of secretions which could narrow, or even block the tube; however, the suction procedure must be done carefully to avoid damage to the airway and prolonged occlusion of the airway during the procedure. Each trust will have their own protocols and guidance for clinical management of tracheostomies, which will include suction procedures and change of the tracheostomy tube. Hutchins & Wilson (2006) provide evidencebased guidelines for the equipment used and method of suctioning that is likely to form a basis for many trust protocols, which may be individualised for particular children. Other essential care skills required by carers of children with tracheostomies are: Cleaning the stoma to reduce the risk of irritation and infection Changing the tapes holding the tube in place to ensure the tube does not become dislodged Changing the tube itself to maintain a patent airway. All these cares will be carried out routinely in the hospital setting following local trust policy guidelines; however, once the child is ready for discharge, it is vital that all carers who will be involved with the child receive appropriate education and support to ensure they are competent to continue the child’s care. Not only do carers have to obtain knowledge and expertise in these skills, they also have to be trained in resuscitation procedures, due to the potential risk of blockage or displacement of the tracheostomy tube. Examples of parent’s training packages can be found on the children on long term ventilation website (www.longtermventilation.nhs.uk). It is essential that written procedures and protocols are provided for carers: Noyes & Lewis (2005) suggest they follow three principles: see Box 3.4.


1/21/2008 9:55:52 AM

44


Box 3.4

Principles for written protocols

1. They meet the needs of the least-trained carer working with the child to ensure they are clear and do not require prior knowledge and expertise 2. They include potential scenarios and situations that could occur, with guidance and solutions to manage the situation 3. They are individualised to each household and setting the child will be accessing, so that carers can manage the child safely in each setting (Noyes & Lewis, 2005)

In order to carry out tracheostomy care in the community setting, it is important to ensure that the child has access to all the equipment they need to sustain their normal routine. Furthermore this equipment must be accessible in all the environments the child will be accessing, usually school or nursery, and home. For other settings the child may visit for shorter periods, emergency equipment must be carried with them. Essential equipment for children with tracheostomies include two suction machines, in case one of the machines breaks down, and all the appropriate consumable equipment to carry out suction – suction catheters and gloves. Spare tracheostomy tubes are required, along with tracheostomy tape and any other individual equipment the child needs for their care.

Case example

Tracheostomy

Sonya was born 5 weeks prematurely with a narrow trachea, which resulted in a tracheostomy to maintain her airway in order to wean her off ventilation. She remained in hospital for 6 months until she was medically stable and ready for discharge. The plan in the future is to reverse the tracheostomy whenever Sonya is older and her airway is larger, with some reconstructive surgery. Both her parents live together and have another child aged 5 years; they were keen to take her home and regain some normality in their family life. To be able to take Sonya home, both parents had to undergo training and education in the care and management of all aspects of a tracheostomy, to ensure they were competent to continue her care. Sonya on discharge required two suction machines, a nebuliser, suction catheters, gloves, tracheostomy tubes and an emergency kit


1/21/2008 9:55:52 AM


Case example

(Continued)

that contained suction equipment, and a smaller sized tracheostomy tube for ease of positioning in an emergency situation, along with an Ambu bag and tracheostomy mask. Her parents were trained in tracheostomy care and could both change Sonya’s tracheostomy tube, carry out suction as necessary, change the tracheostomy tapes and clean around the stoma. They had also received basic life support training and were aware of what actions to take should Sonya’s tube become blocked or dislodged, or if her condition deteriorated. The children’s community nursing team were available to give support to Sonya and her parents as required during her discharge period and negotiate how many hours of continuing support were required on a regular basis. Now at age 18 months Sonya and her family receive 12 hours care from a health support worker over 3 or 4 days, negotiated with Sonya’s mother. This enables her to carry out other activities, while a trained carer stays with Sonya. The key worker is a children’s community nurse who visits fortnightly to supervise Sonya’s care package, and ensure it meets the current needs of Sonya and her family.

Sonya’s case example illustrates the issue of supplying specialist equipment in the community setting. Community health services do not routinely purchase specialised equipment such as suction machines, suction catheters and tracheostomy tubes; therefore organisation and provision of this equipment must be negotiated with the appropriate funding organisation. This may be initially from a regional specialist fund, the local NHS trust or negotiated on an individual basis for each child. Glendinning & Kirk (2000) discuss difficulties parents experienced in obtaining further supplies of equipment resulting in stressful encounters over quantities of supplies, delivery of equipment or disparities between order and supply. The key worker of the child must ensure that all consumable equipment required is available, and that there is a suitable system to re-order and obtain the equipment according to the family’s needs. This may be through a regular order, or directed either by the parents or care workers on a top-up system of re-ordering when a particular limit is reached. Whatever system is being used, it is important that parents are aware of how to obtain supplies to ensure they do not run out of equipment. Maintenance of machinery in the community is also an ongoing responsibility of the health service to ensure the safety of patients, so this must also be part of the child’s ongoing care plan.


1/21/2008 9:55:52 AM

46


Oxygen dependency The main goal of oxygen therapy is to reverse, reduce or prevent the effects of chronic hypoxaemia (MacLean & Fitzgerald, 2006). However oxygen therapy for children has some specific characteristics; it is often for a limited period, requiring specific equipment due to low oxygen flows, it must consider growth and development of the child, and it may only be required overnight particularly during weaning off oxygen therapy (Balfour-Lynn et al., 2005). There are several paediatric conditions that require long term oxygen therapy: some are listed below: see Box 3.5. Box 3.5 Paediatric conditions that require long term oxygen therapy Chronic neonatal lung disease – bronchopulmonary dysplasia Congenital heart conditions Interstitial lung disease End stage cystic fibrosis

Chronic neonatal lung disease is one of the commonest reasons for long term oxygen therapy in children due to increasing survival rates of babies born prematurely with low birth weights. Prolonged ventilation of neonates can result in bronchopulmonary dysplasia due to the effects of ventilator pressure, and oxygen toxicity on immature lung tissue (Yeo, 2000). Oxygen therapy often continues for some time after the infant is stable and weaned off ventilation, which would necessitate a lengthy stay in hospital unless home oxygen therapy is considered. Hallam et al. (1996) suggest long term oxygen therapy given at home is a preferable option to long term hospital care due to cost and use of resources in neonatal care. This is supported by Balfour-Lynn et al. (2005) who consider home oxygen for infants as normal practice when the child’s medical condition is stable due to improved health care both in hospital and the community.

Care required for oxygen-dependent children Balfour-Lynn et al. (2005) provide discharge criteria to ensure the family are able to cope with oxygen therapy at home. They basically fall into two categories: the child must be medically stable, and the family and home environment must be suitable to care for a child on oxygen


1/21/2008 9:55:52 AM


therapy. Medical stability will take into account the oxygen saturation levels of the child ensuring that they stay above a minimum level, and also that the child can manage for short periods in air without critical deterioration. This usually means that the child will be on low levels of oxygen therapy. The main carers, typically the parents of the child need to have cardiopulmonary resuscitation training in case of emergencies, and also education on all aspects of delivering oxygen therapy safely. This will include care and management of the nasal cannulae and monitoring the infant to ensure they know how to recognise signs of deterioration, and what actions to take. The home environment must be suitable for oxygen therapy equipment and parents must have access to a telephone; they also require regular supervision and support from community nurses. The equipment required for home oxygen therapy will be supplied by a home oxygen service. The Department of Health (2004b) issued guidance for changes to how oxygen therapy at home would be delivered in England and Wales. Prior to 2006 pharmacies supplied oxygen, but following the Department of Health guidelines a new home oxygen service commenced in February 2006. Under this system England and Wales have been split into 10 separate geographical regions, and companies may negotiate a contract with the NHS Purchasing and Supply Agency to provide the oxygen service for one or more regions. Once a child is identified as needing home oxygen, the specialist consultant will fill in a home oxygen order form (HOOF) to prescribe the oxygen required, in terms of the flow rate and length of time required. It will also include details of whether portable oxygen is required; this ensures that the home oxygen service can supply the most appropriate equipment for the child and family. The HOOF document is forwarded to the relevant home oxygen service who will arrange to fit and supply all the necessary equipment for the child and family. The service also maintains the equipment and delivers new supplies until there is a change to the child’s requirements, in which case a new HOOF document will be completed by the clinician to inform the home oxygen service. There is some debate over whether an oxygen saturation monitor is required (Balfour-Lynn et al., 2005) for children on long term oxygen therapy. Some parents may be reassured if they have an objective measurement to support their own judgements of whether their child’s condition is deteriorating. However there is the counter argument that they may cause more worry due to normal variations in the child’s oxygen saturation levels, particularly overnight or when the child is moving. Children’s community nurses may use oxygen saturation monitors intermittently, as part of their continuing evaluation of the condition of children who are dependent upon oxygen.


1/21/2008 9:55:52 AM

48


Case example

Oxygen dependency

Gemma was born at 28 weeks gestation and soon developed respiratory distress syndrome which required respiratory support with oxygen and continuous positive airway pressure (CPAP). Respiratory support continued over 4 months until Gemma was weaned off CPAP ventilation, but she still required oxygen due to bronchopulmonary dysplasia. At 5 months of age Gemma was medically stable and ready for discharge, but required long term oxygen therapy at home. Gemma’s mother is a single parent living in a second floor flat with her other daughter who is 3 years old. She was keen to have Gemma at home due to the difficulty of visiting her in hospital, therefore a multidisciplinary meeting was arranged to plan Gemma’s discharge. Gemma required 0.4 litres of oxygen per minute, therefore she required an oxygen concentrator, low flow meter and some portable oxygen cylinders to allow her mother to take her out of the flat. The children’s community nurse met Gemma and her mother prior to discharge to establish a relationship with the family and was involved in some of the training for care of Gemma. This included training and education in resuscitation procedures and general management of oxygen therapy. The flat that Gemma’s mother lived in required a home visit by the children’s community nurse to carry out a risk assessment, and ensure the necessary equipment could be installed safely. Although the flat was on the second floor the stairs were wide so that Gemma’s mother could manage to get a pram with oxygen cylinder up and downstairs. Advice was given about avoidance of open flames and oxygen, and safety regarding oxygen in the home environment. Initially following discharge the children’s community nurse visited two or three times per week to ensure Gemma was well and her mother was coping with all her care. The visits gradually reduced over time to a weekly check to offer advice and ongoing support to the family. The health visitor was also involved in the support of Gemma’s mother; she was able to arrange some nursery care for Gemma’s sister, and was able to collaborate with the children’s community nurse in giving the same advice to Gemma’s mother regarding general care. Nutritional guidance and immunisation advice were also part of the health visitor role to ensure Gemma followed the normal health promotion schedule of other children. Gemma’s case example highlights the importance of the home environment and social situation of the family when discharging a


1/21/2008 9:55:52 AM


technology-dependent child into the community. Gemma’s mother as a single parent with two children living in a privately rented flat, had considerable financial difficulties and was at risk of being socially excluded from normal health, education and social services in her area. The flat was not an ideal setting for caring for a child dependent upon oxygen due to limited space for equipment and negotiating communal stairways to the outside environment. Beresford & Oldman (2002) carried out research with families of disabled children and found that housing was often unsuitable where treatment and equipment was required by the child, as there were difficulties with space for storage and normal family activities. The lack of social support available for this family to share the physical care and supervision of Gemma, could restrict not only the social and daily activities of Gemma’s mother but also her other child’s activities, and potentially the chance to return to work. Wang & Barnard (2004), identify possible financial difficulties due to the inability of mothers caring for technology-dependent children to work to improve their circumstances, partly due to caring responsibilities and partly due to lack of suitably qualified carers. It is therefore the responsibility of professionals working with the family to identify what financial and social constraints exist and possible resources that could be accessed to improve the family’s situation.

General issues related to caring for technology-dependent children The technology used to support children in the community varies considerably from highly specialised equipment requiring a high level of care and funding, to less specialised technology that proves easier to manage in terms of care and resources. However common issues exist within the examples used that illustrate why some of the care required by children who are dependent on technology may be described as complex; see Box 3.6. Box 3.6 Common issues for children dependent on technology Demands of caring upon family life Intrusion of professional carers into the home environment The impact of the home environment on care provision by services Supply and storage of specialised equipment in the home environment


1/21/2008 9:55:52 AM

50


Carers working in the community have to be aware of the wider social issues involved when planning care and resources to meet the needs of technology-dependent children at home. This will involve assessment of the family’s ability to cope with caring for their child. The use of family-centred care as an approach to assessment is based on respect for the individual nature of the family, and recognises that the carers of children dependent on technology have made a decision to become involved with the technological aspects of their child’s care. The level of care should not be assumed, but negotiated whenever technological care is required; this will be prior to discharge from acute settings in most cases. Smith (2002) refers to negotiation of care for children as a difficult area for nurses to manage when dealing with parents, due to the balance of power in hospital settings. The nurse is in control with parents unsure of the environment, therefore when parents are present nurses may assume that parents wish to be involved. There may be even more assumptions made about care whenever a child is stable and ready for discharge. Kirk (2001) suggests that parental responsibilities may not be openly negotiated, as the desire for discharge from both parents and staff dominates communication. This may result in parents assuming more care and responsibility than they can realistically cope with. Research carried out with parents of technology-dependent children (Kirk & Glendinning, 2004; Heaton et al., 2003), found that the lives of the whole family can revolve around the routine of care, with the house medicalised and professional visits dominating the structure of activities. Parents wanted their children to be cared for at home but reported stress, anxiety and exhaustion, due to lack of supportive specialised services in the community that offered alternatives to parental caregiving. Many parts of the UK now have children’s community nursing services to co-ordinate discharge of technology-dependent children into the community, and provide care and support at home. Sidey & Widdas (2005) provide a comprehensive source of information on different aspects of children’s community nursing, which outlines the development and role of these services with different groups of children. Widdas et al. (2005) suggest that the lack of a national strategy for children’s community nursing development has resulted in different types of services available to care for technology-dependent children, which range from individual care packages, to service co-ordinated care delivered from a continuing care team. Carers employed either as part of a team or individual care package will consist of both registered nurses and non-registered carers.


1/21/2008 9:55:52 AM


Non-nursing support workers are important members of the caring team delivering care to technology-dependent children, therefore it is important that they receive training, knowledge and support from specialist nurses that can supervise and monitor the ongoing care the child requires. Other carers involved with the child and family may include social carers who can assist with domestic tasks in the household, or care of siblings to enable parents to continue specialist care. Play workers, social workers, health visitors and physiotherapists are other examples of professional carers that may be involved with the family. Hence the number of professionals visiting the family can be extensive with poor co-ordination between organisations. Kirk & Glendinning (2004) interviewed parents of technology-dependent children and found that families felt overloaded with visits or confused about the responsibilities of different services, therefore agreement must be reached between agencies to ensure the needs of the family are met from the most appropriate service. A solution to some of these issues is to ensure families have access to a key worker or lead professional. The Association for Children with Life-threatening or Terminal Conditions & their Families & Royal College of Paediatrics & Child Health (2003) recommend that key workers are provided for families who require care from more than one agency to co-ordinate care and collaborate with all the relevant professionals involved in care. Supporting evidence from Beresford et al. (2005) suggests that key working improves the overall quality of life of families through better relationships with services and professionals, and better access to services and benefits. The role of the key worker incorporates the following: see Box 3.7. Box 3.7

Role of the key worker

Providing information and advice to the family Identifying and addressing needs Accessing and co-ordinating services in a timely manner Providing emotional support Acting as an advocate for the family Beresford et al. (2005, p. 19) The Department of Health incorporates the use of a key worker in their long term ventilation exemplar (Noyes & Lewis, 2005) as good practice to ensure family-centred services are co-ordinated from the start of


1/21/2008 9:55:52 AM

52


discharge planning, to the eventual care of a long term ventilated child at home. Although Greco & Sloper (2004) identify key worker services are variable across the UK, they found that many care co-ordination schemes were in the process of providing key workers. Policy recommending multi-agency working and funding (DH, 2004a) supports the development of such schemes in an effort to provide consistency to families of children with ongoing care needs due to disability or health problems. While families have to come to terms with the unfamiliar nature of multiple services and professionals in their home, this is also true for professionals that have to deal with joint working practices in the unfamiliar setting of a family’s home. It is important that guidelines exist to protect both carers and the family to ensure good working practice is promoted in the child’s home. Noyes & Lewis (2005) provide guidance for professional carers working in domestic homes, with examples of agreements of care that can be drawn up between professionals and families. Agreements will be individual, but may include common issues of what facilities the carers can use when in the family home. Providing care over a number of hours means that professional carers may be in a home overnight, therefore they need access to toilet facilities and the means of making a drink or having a meal. Negotiation of how carers will behave in the home environment should be considered to minimise disruption to the normal lifestyle and protect the privacy of the family. Equally carers should be protected by the agreement to ensure they have adequate facilities to provide care and are not treated in an unacceptable manner by the family. This could include harassment of the carers by parents, or withdrawing their agreed participation in caring responsibilities. Tension and poor relationships can occur unless time is taken to have regular meetings between the key worker, carers and parents to discuss any concerns as they arise. Health and safety of carers working in the home is also an important issue, therefore an assessment of the home environment as a place of work is vital. The home assessment must include moving and handling the child, disposal of clinical waste, infection control, lone working and the space where caring will occur in terms of suitability for lighting, heating and seating (Noyes & Lewis, 2005). Home sized equipment can be resourced to ensure it is acceptable to the family and does not encroach upon the family’s living space. If electrical equipment is required by the child on a continuous basis, it is important to establish what the procedure is if there is a power breakdown. This should form part of the home assessment with guidance on regular maintenance. The storage of


1/21/2008 9:55:53 AM


disposable equipment and supplies must also be included in the assessment to prevent disruption in the home and ensure there is adequate space. In some circumstances adaptations to housing may be required to accommodate the child and the technological equipment and supplies for their care. This may cause delays to discharge so should be considered early in a child’s care if future care at home is a possibility. Caring for technology-dependent children in hospital settings is fairly common practice, but the movement of such children into the community, although happening in increasing numbers remains a challenge to community services and parents due to some of the issues raised in this chapter. One of the main reasons technology-dependent care is described as complex appears to be due to the fact that the care required by the family is outside normal community service provision at present. As community services for children continue to develop, and children are mainly cared for in community settings, services will be better prepared for delivery of technology-dependent care in terms of funding, carers and equipment as part of normal resources available in the community. Summary Children requiring technological assistance with respiration can be cared for successfully at home Specialised equipment and resources are co-ordinated by children’s community nursing teams, or specialist children’s nurses Care is negotiated with parents and families to minimise disruption to the family’s lifestyle Guidelines and protocols for care by professionals in the home are essential to minimise risk and manage care effectively Key workers can improve the quality of care to families whenever more than one agency is involved in caring for technologydependent children at home

Useful websites Every Child Matters: Change for Children programme www.ecm.gov.uk Families of spinal muscular atrophy website www.fsma.org UK children on long term ventilation (LTV) www.longtermventilation.nhs.uk


1/21/2008 9:55:53 AM

54


References Association for Children with Life-threatening or Terminal Conditions and their Families (ACT) & Royal College of Paediatrics and Child Health (2003) A Guide to the Development of Children’s Palliative Care Services. ACT, Bristol. Balfour-Lynn, I., Primhak, R., & Shaw, B. (2005) Home oxygen for children: Who, how and when? Thorax, 60, 76–81. Beresford, S. & Oldman, C. (2002) Housing Matters: National Evidence Relating to Disabled Children and Their Housing. Policy Press, Bristol. Beresford, B., Clarke, S. & Sloper, P. (2005) Integrating Services for Disabled Children, Young People and Their Families in York: Consultation Project. Social Policy Research Unit, University of York. Buglass, E. (1999) Tracheostomy care: Tracheal suctioning and humidification. British Journal of Nursing, 8, 500–504. Coffman, S. (1995) Crossing lines: Parents’ experiences with pediatric nurses in the home. Rehabilitation Nursing Research, 4, 136–143. Coleman, V., Smith, L. & Bradshaw, M. (2007) Children’s and Young People’s Nursing in Practice. A Problem-based Learning Approach. Palgrave MacMillan, Basingstoke. Department for Education & Skills (2006) The Common Assessment Framework. HM Government, London. Department of Health (2004a) Standard 8 – disabled children and young people and those with complex health needs. In: National Service Framework for Children. DH, London. Department of Health (2004b) Home Oxygen Therapy: Service Specification. DH, London. Department of Health (2005) Complex Disability Exemplar. DH, London. Glendinning, C. & Kirk, S. (2000) High-tech care: High-skilled parents. Paediatric Nursing, 12, 6, 25–27. Glendinning, C., Kirk, S., Guiffrida, A. & Lawton, D. (2001) Technology-dependent children in the community: Definitions, numbers and costs. Child: Care, Health and Development, 27, 4, 321–334. Greco, V. & Sloper, P. (2004) Care co-ordination and key worker schemes for disabled children: Results of a UK-wide survey. Child: Care, Health and Development, 30, 13–20. Hallam, L., Rudbeck, B. & Bradley, M. (1996) Resource use and costs of caring for oxygen dependent children: A comparison of hospital and home-based care. Journal of Neonatal Nursing, 2, 25–30. Heaton, J., Noyes, J., Sloper, P. & Shah, R. (2003) Technology and Time: Home Care Regimes and Technology-Dependent Children. Social Policy Research Unit, University of York. Hutchins, J. & Wilson, M. (2006) Tracheostomy care. In: Practices in Children’s Nursing. Guidelines for Hospital and Community (eds E. Trigg & T Mohammed), 2nd edn, pp 395–409. Elsevier Churchill Livingstone, Edinburgh. Jardine, E. & Wallis, C. (1998) Core guidelines for the discharge home of the child on long-term assisted ventilation in the United Kingdom. Thorax, 53, 762–767.


1/21/2008 9:55:53 AM


Jardine, E., O’Toole, M., Paton, J. & Wallis, C. (1999) Current status of long term ventilation of children in the United Kingdom: Questionnaire survey. British Medical Journal, 318, 295–299. Kirk, S. (2001) Negotiating lay and professional roles in the care of children with complex health needs. Journal of Advanced Nursing, 34, 5, 593–602. Kirk, S. & Glendinning, C. (2004) Developing services to support parents caring for a technology-dependent child at home. Child: Care, Health and Development, 30, 3, 209–218. Ludvigsen, A. & Morrison, J. (2003) Breathing Space: Community Support of Children on Long Term Ventilation – Summary. Policy and Research Unit. Barnardo’s, Essex. MacLean, J. & Fitzgerald, D. (2006) A rational approach to home oxygen use in infants and children. Paediatric Respiratory Reviews, 7, 215–222. Margolan, H., Fraser, J. & Lenton, S. (2004) Parental experience of services when their child requires long-term ventilation. Implications for commissioning and providing services. Child: Care, Health and Development, 30, 3, 257–264. Noyes, J. & Lewis, M. (2005) From Hospital to Home. Guidance on Discharge Management and Community Support for Children Using Long-Term Ventilation. Barnardo’s. Essex. Sidey, A. & Widdas, D. (2005) Textbook of Community Children’s Nursing, 2nd edn. Elsevier, Edinburgh. Smith, L. (2002) Negotiation of care. In: Family-centred Care (eds. L. Smith, V. Coleman & M. Bradshaw), pp. 114–130. Palgrave, Basingstoke. Trachsel, D. & Hammer, J. (2006) Indications for tracheostomy in children. Paediatric Respiratory Reviews, 7, 162–168. Trigg, E. & Mohammed, T. (2006) Practices in Children’s Nursing. Guidelines for Hospital and Community, 2nd edn. Elsevier Churchill Livingstone, Edinburgh. Wang, K. & Barnard, A. (2004) Technology-dependent children and their families: A review. Journal of Advanced Nursing, 45, 1, 36–46. While, A., Cockett, A. & Lewis, S. (2004) Children and young people requiring home assisted ventilation in the south of England: Incidence, receipt of care support and components of the care package. Children and Society, 18, 207–217. Widdas, D., Sidey, A., with Dryden, S. (2005) Delivering and funding care for children with complex needs. In: Textbook of Community Children’s Nursing (eds A. Sidey & D. Widdas), 2nd edn, pp. 249–260. Elsevier, Edinburgh. Wilson, M. (2005) Tracheostomy management. PN665 Paediatric Tracheostomy. Paediatric Nursing, 17, 3, 38–44. Yeo, H. (2000) Nursing the Neonate, 2nd edn. Blackwell Science, Oxford.


1/21/2008 9:55:53 AM

4

Caring for Children with Complex Needs Who Require Home Enteral Tube Feeds Janice High

Key Points There are practical, psychological and social factors that affect parents caring for a child with home enteral tube feeding (HETF) Recognition of the psychosocial aspects of caring for a child who requires HETF is not always acknowledged by professionals, as technical competence assumes priority Service provision and support for parents and children who require HETF varies across the country from specialised nutrition support services to more generic care

Introduction In the UK there are increasing numbers of children with complex needs and disabilities being cared for by parents in the home who require long term home enteral tube feeding (HETF), to optimise their nutritional status due to a chronic illness or specific condition (Jones et al., 2005). Appierto et al. (2002) suggest that when children with complex and continuing health needs are cared for at home their physical, psychosocial and developmental outcomes are improved. However, Stratton et al. (2005) suggest that although HETF has made significant Caring for Children with Complex Needs in the Community © 2008 Blackwell Publishing. ISBN: 978-1-405-15177-1



57

1/21/2008 12:36:38 PM

58


cost savings in terms of the need for hospital care and funding by the NHS, it has conversely placed greater responsibility and stress on families and carers having to cope with their child’s treatment, and supportive care on a daily basis within the community. There have been several studies where these potential problems have been identified, particularly, the effect upon family life, and the stress of carers taking on this aspect of care (Townsley & Robinson, 2001; Puntis, 2001; Pederson et al., 2004; Evans et al., 2006). It has been consistently argued within the literature that national guidance should be developed to clearly state what role services should play in supporting children who require HETF jointly across health, social care and education services. Guidance should also indicate how families should be involved in the decision making process to decide what is in the best interests of their child, and their family situation and how services can support them in their role of carers. Without guidance, service provision remains disjointed and inconsistent across the UK (Townsley & Robinson, 2000). This chapter aims to identify the practical and psychosocial implications of managing HETF experienced by the child and family, with a discussion and summary of recommendations on what support services are required, to enable families to care for their child in an effective and co-ordinated way. A case example will be used to illustrate some of the issues raised, although names and identifying features will be changed to protect confidentiality.

Why choose home enteral tube feeding? Enteral tube feeding describes a method of feeding a child the nutrition they require using a tube placed directly into the stomach or small intestine. Enteral feeding may be used as a sole source of nutrition or as a supplement to oral feeding (Holmes, 2004). There are many reasons why a child may need to be fed enterally; see Box 4.1. Box 4.1 Reasons why a child may need to be fed enterally To bypass dysfunction, obstruction/surgery or reduce discomfort Gastro-oesophageal reflux Cerebral palsy, impaired growth, developmental delay, muscle wasting disorders Failure to thrive


1/21/2008 12:36:39 PM

Caring for Children Who Require Home Enteral Tube Feeds 59

Box 4.1

(Continued)

Child too ill to eat Cardiac or respiratory problems Palliative care (Holmes, 2004)

An example may be a child with cystic fibrosis who may suffer chronic malnutrition related to their condition, because of the body’s inability to digest and absorb nutrients effectively. Enteral feeding may be the only method of obtaining their nutrition, or may be a supplement to their normal diet. In the case of a child with a disability such as cerebral palsy, spina bifida or other neurological impairment, the child may become malnourished because of oro-motor dysfunction – the inability to swallow and chew foods, or have a potential danger of food inhalation (Sharpe, 2000). The child’s physical well-being may be further compromised as food inhalation could lead to recurrent respiratory infection and illness, or choking. As Couriel et al. (1993) suggest, instead of meal times being an enjoyable family event, they become stressful and time consuming for the child and those caring for them.

Case example

Saima

Saima is a 4-year-old child with cerebral palsy and oro-motor dysfunction. She has had increasing problems with swallowing food, despite having semi-solid foods, and has been losing weight. Saima has two younger brothers, therefore there are considerable caring demands on Saima’s mother. Attempting to feed Saima was time consuming and could take as long as an hour, and her mother was frightened when she started coughing and choking. Saima had repeated hospital admissions due to respiratory infections, which necessitated tube feeding to give her adequate nutrition during these periods. After discussion with Saima’s parents it was decided that a gastrostomy tube was the best option to meet Saima’s long term nutritional needs. The gastrostomy surgery was carried out at a specialist hospital and Saima returned to her local hospital children’s ward to prepare for eventual discharge home. (Continued)


1/21/2008 12:36:39 PM

60


Case example

(Continued)

Both parents were involved in the education sessions to learn how to feed Saima via gastrostomy, and were introduced to the children’s community nurses who would be supporting the family at home. However Saima’s father worked nights so would not actually be carrying out much of the care on a daily basis. A multidisciplinary meeting was arranged to discuss Saima’s ongoing nutritional needs in the community, which involved the parents, the paediatric dietician, Saima’s medical consultant, children’s community nurses and also a children’s social worker to consider whether financial assistance and respite care were required by the family. The local area where Saima receives health care (Bradford Teaching Hospitals NHS Foundation Trust) has a contract with a specialist home nutrition company that delivers feeding equipment and feeds to children who are enterally fed at home. The dietician starts the process of referral by writing to the child’s general practitioner to arrange prescription of the feeds and then contacts the nutrition company. The company sends a representative to the family home to demonstrate the feeding equipment and negotiate when supplies of feeds and feeding sets will be delivered. The children’s community nurse will also be involved in the visit to ensure that all other professionals are aware of the care negotiated with the family. The nutrition company representative leave a 24-hour contact number with the family to ensure if problems arise, a replacement pump or other equipment can be arranged. They also contact the family on a monthly basis to check supplies are meeting the needs of the child. Once Saima’s mother was confident and competent in giving the gastrostomy feeds and caring for the gastrostomy site, discharge was arranged with follow-up support from the children’s community nurses on a regular basis.

Current support provision for enterally fed children Despite clear evidence that numbers of children with complex health needs or disabilities requiring long term home enteral feeding are increasing, there is a notable lack of information about the extent and nature of current support services for these children and families.


1/21/2008 12:36:39 PM


Information regarding what support families actually receive, access to services, and families’ experiences in managing the practical, social and emotional aspects of HETF, is also limited. Children and families have the potential to receive care from a diverse network of health, social, education and voluntary support agencies. However, it would appear that this can prove to be problematic for families because of the confusion that often accompanies decision making regarding which services should be providing what care and support. One individual family may have varying numbers of different ‘professionals’ involved in their child’s care and management at any one point, which can often lead to a lack of continuity and co-ordination and may leave the family uncertain about who they should contact and when (Townsley & Robinson, 1999). Children requiring HETF need support that crosses agency and professional boundaries, therefore effective multi-agency working is of particular importance. A lack of co-ordination of these services can often overwhelm parents particularly when visits from different professionals may be perceived as unnecessary and impact on their family privacy (Boosfeld & O’Toole, 2000). Individual roles of different professionals may not be clearly expressed to them; see Chapter 6 for more discussion of multi-agency collaboration. Current policy and legislation increasingly requires professionals across health, social care and education to work in a more ‘joined up’ manner and evidence suggests that families would prefer agencies to work together more effectively (Mukherjee et al., 2000; LimbrickSpencer, 2000; Department of Health (DH), 2004). However, the variability across the UK in which services are co-ordinated is considerable. Professionals supporting families with a child being enterally fed ideally would work within a team which includes a paediatrician, general practitioner, speech and language therapist, a nutritional nurse specialist, community children’s nurses, health visitors, school nurses and dietician. Having a resourceful and effective team from both community and specialist perspectives enables the best care and services to be provided within the resources that are available within that particular area. The Children’s National Service Framework (NSF) (DH, 2004) specifies that appointments should be planned to minimise disruption to family life. This includes health and social care appointments within a hospital or clinic setting, as well as planned visits to the home. A lack of co-ordination could add to the burden of care which parents already have (Boosfeld & O’Toole, 2000).


1/21/2008 12:36:39 PM

62


Practical and psychosocial impact of HETF experienced by the child and family Brotherton et al.’s (1995) study of parents whose children had cerebral palsy found that making the decision for the child to have a gastrostomy tube was difficult. They found that this decision was often complicated by family circumstances and attitudes, with parents worried about the effect that having an enteral feeding tube would have on the child. Another significant concern was that some parents believed that oral feeding would be prohibited once they agreed to tube feed. This may add to parents’ reluctance to accept tube feeding for their child, as studies have shown that no matter how difficult oral feeding was, the parent–child interaction associated with feeding was important, pleasurable and an important aspect of socialisation for the child (Brotherton et al., 1995; Rouse et al., 2002; Guerriere et al., 2003). As Rollins (2006) suggests, it is not surprising that some parents continue to attempt to orally feed their child although professional advice, would prohibit oral feeding due to potential choking hazards. The difficulties of oral feeding are relieved when tube feeding is suggested by professionals, but some parents feel guilty about putting their child through further invasive procedures when they feel that their child may have already suffered enough (Guerriere et al., 2003). The final decision to proceed with long term enteral feeding may therefore be difficult for parents despite professional recommendations and support. Tube feeding can be seen as confirmation that something is very wrong with their child (Craig et al., 2003). An additional factor is that for extended family members the child may seem abnormal due to the tube, with the result that tube feeding becomes stigmatising and frightening rather than nurturing (Spalding & McKeever, 1998). Indeed Guerriere et al. (2003) found that many family members threatened to refuse to care for the child if fed by tube. Sleigh (2005) suggests that once the tube was placed, many families felt satisfied and some mothers described positive changes in their child and family life. This is supported by Smith et al. (1999), who found that 86% parents felt that commencing enteral feeding had a positive effect on the child and family’s life. Many families stated clearly that they would have commenced enteral feeding earlier if they had known how successful it was going to be. However, some qualitative studies have reported less positive findings; in Spalding & McKeever’s (1998) study, mothers after initial satisfaction, felt growing concern related to the abnormal nature of the feeding method and suggested that it was time


1/21/2008 12:36:40 PM


consuming and governed both child and family life. In fact in this study all the mothers wanted the gastrostomy closed eventually. Several studies (Townsley & Robinson, 2000; Craig et al., 2003; Guerriere et al., 2003) describe families wanting more information about tube feeding prior to its placement; not only about medical aspects but also about how it would affect their everyday lives. Townsley & Robinson’s (2000) study concluded that there was a need for one person to coordinate between professionals, be expert in the management of feeding, provide 24-hour telephone support, and to work in partnership by listening and recognising the families’ expertise. Realistic expectations regarding professional support and being kept up to date with their child’s progress helped many parents come to terms with the commencement of enteral tube feeding. Evans et al. (2004) identify a number of practical and emotional difficulties identified by parents and carers when carrying out long term enteral tube feeding; see Box 4.2. Box 4.2 Enteral tube feeding: difficulties identified by parents and carers Lengthy and complex process for obtaining feeds when crossing health authority boundaries Delayed or incomplete delivery of equipment Obtaining GP prescriptions for feeds/supplements Changing the type of delivery system used to give the feed without prior training Emotional and physical demands on individual family members when caring for a child requiring HETF Evans et al. (2004)

Families clearly have to be educated in managing enteral feeding and acquiring a new set of skills which can be technically and medically complex. This requires a certain level of knowledge and a commitment from parents or carers to determine whether the care will have a negative impact upon them and the family as a whole. Increased stress was identified in families where there was a lack of support from the spouse, family and friends, limited social activities and where a parent had a health problem (Pederson et al., 2004). Preparing parents for the emotional and psychological aspects of undertaking the care of their child’s nutrition at home is often not


1/21/2008 12:36:40 PM

64


recognised as part of the preparation required to ensure parents are in a good position to cope once at home (Boosfeld & O’Toole, 2000). This is discussed by Glendinning & Kirk (2000) who found that this aspect of care can be overlooked, with the focus primarily being on providing physical and technical care. Thorne et al. (1997) identify the potentially conflicting role of the parent or carer in managing long term HETF within the home, which is supported by other studies. Rouse et al. (2002) suggest that feeding problems threaten a mother’s identity as a ‘good mother’, potentially harming the parent–child relationship, with some mothers reporting an inability to bond with their child. Townsley & Robinson (2000) in their study explored the extent and nature of support available to families caring for a child requiring HETF. They also examined the practical, social and emotional impact of HETF on disabled children, their families and carers. They found that families often received conflicting advice or information about the management of their child’s HETFs. However, Taylor (2000) suggests that parents are generally provided with better information about their child when their care is provided outside the hospital environment, but there were still major concerns in service delivery; see Box 4.3.

Box 4.3

Concerns in service delivery

Families were not told of the potential social and emotional implications of HETF on the child and family Information about support groups was lacking Information and support needs of minority ethnic groups were not considered by the majority of professionals Lack of policy or guidance in supporting non-parent carers led to problems where the child was unable to access education and short term respite/shared care services Service provision was generally poorly co-ordinated and interagency initiatives established to overcome these difficulties were vulnerable to funding withdrawal Other practical issues that families encountered with HETF according to Evans et al. (2006) were: Sleep disturbance Tube dislodgement or blockage Infrequent changing of tube Accuracy of feed pumps


1/21/2008 12:36:40 PM


It is clear from the literature discussed that the development of the skills, knowledge and confidence to enable parents to provide HETF care requires considerable ongoing support and education. It is recognised that many parents who have a child with complex needs are often more knowledgeable about their child than the professionals involved in their care. However, the emotional support required by even ‘expert’ parents is often neglected as some professionals may feel threatened by them (Glendinning & Kirk, 2000). The Department of Health (2001) recommends that expertise should be shared by the parent and professional, particularly when considering and defining roles and responsibilities in caring for the child.

Liaison between hospital and community professionals Planning discharge from hospital to home for children requiring HETF is time consuming and requires ongoing liaison between hospital and community staff. Significant issues to be considered are: Promoting liaison between hospital and community Assessment of the home environment Education of parents/carers in the practical skills of administering HETF Family awareness of the psychosocial impact of caring for their child at home and support available Effective support network of professionals and the ongoing co-ordination of health and social care appointments (Watson et al., 2002) Although the number of children requiring HETF is increasing, there are still relatively small numbers of children requiring professional support in the community. Consequently, many community health and social care professionals are relatively inexperienced in managing and providing the specialist care that these children and their families need, both physically and psychosocially. Significantly, there are currently very few specialised teams available to coordinate this type of care (Watson et al., 2002) and the majority of these children will be referred to a generalist children’s community nursing team (if available) or the health visitor or school nurse. If community professionals are not informed or prepared for the child going home, they may be ill-prepared in assessing and supporting the current and ongoing needs of the child and family, particularly


1/21/2008 12:36:40 PM

66


when specialist supplies of equipment and feeds are required. This in turn can lead to a disjointed discharge for the family and may even result in a delayed discharge and ongoing difficulties for the family (Townsley & Robinson, 2000).

Barriers to effective discharge planning The most significant issue underlying the majority of barriers is a need for improved co-ordination and effective communication between professionals and even more importantly between professionals and families (Watson et al., 2002). Other factors which may delay discharge home from hospital following the introduction of HETF may include Time taken for planning and the priority given to this by hospital/ community staff and management Staffing and funding issues within health and social care services Lack of collaboration between services Social and financial implications of caring for individual families A planned and staged home discharge with support by relevant health professionals would accustom parents to gradually build up the confidence of managing their child’s needs at home; this would in turn also identify and enable any problems which occurred to be addressed prior to the child being discharged. Preparation also requires liaison between services to prevent inconsistencies in service provision. For example, if services are not co-ordinated, families may be provided with equipment that is different from what they have been taught to use in hospital, or feeds prescribed in hospital may not be available in the community without prior organisation. Effective multi-professional working is essential to ensure a smooth transition for the child and family from hospital to home (Boosfeld & O’Toole, 2000). In the case of Saima, a graduated discharge was arranged, following the multi-professional meeting to discuss discharge, Saima’s parents were encouraged to take her home for a few hours supported by community staff. The time was gradually increased to overnight stays and weekend, until the family were confident in managing all her feeds, medication and equipment. Community staff had a copy of the feeding regime for Saima, and had contact numbers for the specialist nutrition company, dietician and children’s ward to ensure that all relevant information was shared and consistent.


1/21/2008 12:36:40 PM


Provision and funding of equipment The complexity of provision and funding arrangements for technological and medical equipment continues to be problematic post discharge from hospital (Townsley & Robinson, 2000; Kirk & Glendinning, 2002). It is often the case that families, through necessity and lack of appropriate support from professionals, are placed in a position where they have to co-ordinate the equipment and supplies needed to maintain their child’s HETF needs due to disputes between services over funding (Boosfeld & O’Toole, 2000; Glendinning & Kirk, 2000); this is highlighted as a significant stress factor for families (DH, 2004). However, once the child is discharged from hospital, the community trust in the child’s home area is usually required to provide equipment, consumables and nursing support (Glendinning & Kirk, 2000). Prescription of feeds and dietary supplements shifts to the family GP within the primary care trust, and social care, and the local educational authority should provide support for the child and family in the child’s home and in school or nursery. The Children’s NSF (DH, 2004) identifies the need for agreeing funding terms prior to a child being discharged, and that all those involved are made aware of who is responsible for what is being provided. It also recommends that the supply of equipment and consumables should be organised and delivered to the family home to minimise family disruption. In some areas (such as the area Saima lives) care is co-ordinated through contracts with private companies who specialise in nutritional support in the form of supplies and equipment.

Supporting the child requiring HETF in the school environment and respite outside the home In the majority of schools, tasks involving the technological support of children with complex needs may be undertaken on a voluntary basis by members of staff. Staff can choose not to undertake, or withdraw from offering this support if they feel unsupported themselves (Watson et al., 2002). This may impact upon a child having ongoing access to mainstream education as well as being restricted or denied involvement with school activities away from home. Townsley & Robinson (2000) suggest that there is a lack of guidance about which complex healthcare tasks are permissible for non-parent carers to undertake, also how they should be trained, and which agency is responsible for training, and who should have legal liability.


1/21/2008 12:36:40 PM

68


The issue of legal liability was highlighted by the Committee of Enquiry into Health Services for Children & Young People in the Community (House of Commons Health Committee, 1997). The Committee acknowledged that some children’s community teams are unwilling to train non-parent carers because of insurance liability issues. This has implications for non-parent carers through a lack of clarity regarding access to adequate training or assessment of their competence in undertaking HETF (Watson et al., 2002). This can impact upon the child as the parents may lack confidence in leaving their child with untrained carers who are themselves unclear about the scope of their roles and the limits of their responsibility (Watson et al., 2002). Respite provision and short term breaks organised by both voluntary and statutory social services outside the home can also be affected as HETF is the responsibility of the respite carer who is acting ‘in loco parentis’. However, they are not obliged to carry out the administration of enteral feeds. Townsley & Robinson (1999) suggest that all respite carers, if expected to undertake this role, should be offered the opportunity, to be trained appropriately, to be monitored and supported by a relevant health care professional and be legally protected. Importantly, clear, procedural guidelines should be agreed with the respite carer, parent and relevant health care professional. Barnardo’s and the Shared Care Network are exceptions to this and have drawn up detailed and comprehensive good practice guidance on arrangements for providing social care and family-based support services to children who need invasive clinical procedures (Shared Care UK, 1998; Rhodes, 1999). However, where no policies exist, or where policies are unclear, professionals experience confusion and uncertainty about the scope of their role and the extent to which they are supported and indemnified by their employer (Watson et al., 2002). This often results in being a ‘postcode lottery’ in relation to access to services, and evidence suggests that some children with complex healthcare needs are not able to access a full educational curriculum (Townsley & Robinson, 2001), or respite services. The Department for Education & Employment (2000) strongly emphasises the importance of partnership in the education of children with complex and ongoing medical needs and provides guidance as to how this might be implemented. However, this is only guidance and it is clearly the remit of local health, social care and educational authorities to decide how this guidance is interpreted and implemented within their locality. See Chapter 10 for discussion of care in school for children with complex needs.


1/21/2008 12:36:40 PM


Recommendations for effective HETF support services to meet the needs of the child and family As more children are being offered HETF to manage their nutritional requirements more effectively, service provision must develop to ensure staff understand and are educated in recognising the specific needs of families requiring HETF support on an ongoing basis. The need to consult with families and learn from them about their real needs is a theme discussed by Bradley et al. (1995) and Petr et al. (1995). The perspective of the whole family should be taken into account when considering any technical intervention and the subsequent impact it will have upon the child and family’s quality of life. Petr et al. (1995) suggest that this requires professionals to be better educated about the coping processes families go through in order to support them more effectively on an ongoing basis. It is essential that key aspects of good practice are delivered consistently by all professionals involved in the supportive care of a child requiring HETF. Some of these are outlined in Boxes 4.4, 4.5 and 4.6. Box 4.4

Giving families appropriate information

Standardised information/training packs should be developed to meet the needs of individual children and families, covering the practical, social and emotional impact of HETF. Information should be produced to meet both linguistic and cultural needs Roles and responsibilities should be clearly defined so that families know who to contact should problems occur. Effective co-ordination of services is essential (DH, 2004 ) Box 4.5

Supply and delivery of feeds and equipment

Effective communication and provision of prescriptions Use of standardised equipment rather than varying makes and models of equipment (where possible) Liaison between GPs and pharmacists and home delivery service is essential Access to a 24-hour equipment breakdown service Provision of a clear teaching plan with troubleshooting information outlining child’s individual needs for equipment and feeds – re-assessed on an ongoing basis with the child and family


1/21/2008 12:36:40 PM

70


Box 4.6 Timely support from community and hospital professionals Effective co-ordination and communication between hospital and community professionals Discharge planning involving consultation with all relevant professionals and including family Appropriate information and training (if required) to be given to community professionals responsible for ongoing support Direct access to Hospital care if needed (24-hour access)

Summary HETF can have a positive impact upon the lives of children and families Parents attach great importance in maintaining ‘normal’ activities for their children, which may include oral feeding Long term support of families who carry out HETF includes the need for respite or short breaks. In these situations other carers need education and support to safely manage enteral feeding Equipment and supplies for HETF need to be co-ordinated between general practitioners, hospital services and community services, to ensure families have appropriate resources and support

References Appierto, L., Cori, M. & Binnchi, R. (2002) Home care for chronic respiratory failure in children: 15 years experience. Paediatric Anaesthesia, 12, 4, 345–350. Boosfeld, B. & O’Toole, M. (2000) Technology-dependent children: Transition from hospital to home. Paediatric Nursing, 12, 6, 20–22. Bradley, R., Parette, H. & Van Biervliet, A. (1995) Families of young, technology dependent children and the social worker. Social Work in Health Care, 21, 1, 23–27. Brotherton, M., Oakland, M., Secrist-Mertz, C., Litchfield, R. & Larson, K. (1995) Quality of life issues for families who make the decision to use a feeding tube for their child with disabilities. Journal of the Association for Persons with Severe Handicaps, 20, 3, 202–212. Couriel, J., Bisset, R., Miller, R., Thomas, A. & Clarke, M. (1993) Assessment of feeding problems in neurodevelopmental handicap: A team approach. Archives of Disease in Childhood, 69, 609–613.


1/21/2008 12:36:40 PM


Craig, G., Scambler, G. & Spitz, L. (2003) Why parents of children with neuro developmental disabilities requiring gastrostomy feeding need more support. Developmental Medicine & Child Neurology, 45, 3, 83–188. Department of Health (2001) The Expert Patient: A New Approach to Chronic Disease Management for the 21st Century. HMSO, London. Department of Health (2004) National Service Framework for Children, Young People & Maternity Services: Disabled Children & Young People with Complex Needs. HMSO, London. Department for Education & Employment (2000) Supporting Children with Medical Needs in School: A Good Practice Guide. DFEE, London. Evans, S., Holden, C. & MacDonald, A. (2004) Home enteral feeding audit. Journal of Human Nutrition Dietetics, 17, 537–542. Evans, S., Holden, C. & MacDonald, A. (2006) Home enteral feeding audit 1 year post initiation. Journal of Human Nutrition Dietetics, 19, 27–29. Glendinning, C. & Kirk, S. (2000) High tech care: High skilled parents. Paediatric Nursing, 12, 6, 25–27. Guerriere, D., McKeever, P., Llewellyn-Thomas, H. & Berall, G. (2003) Mother’s decisions about gastrostomy tube insertion in children: Factors contributing to uncertainty. Developmental Medicine & Child Neurology, 47, 7, 470–476. Holmes, S. (2004) Enteral feeding & PEG. Nursing Standard, 18, 20, 41–43. House of Commons Health Committee (1997) Health Services for Children & Young People in the Community: Home & School (Third Report). HMSO, London. Jones, B., Stratton, R., Holden, C., Micklewright, A., Glencorse, C. & Russell, N. (2005) Annual BANS Report. Trends in Artificial Nutrition Support in the UK 2000–2003. A Report by the British Artificial Nutrition Survey (BANS) a committee of the British Association for Parenteral & Enteral Nutrition (BAPEN). BAPEN, UK. Kirk, S. & Glendinning, C. (1999) Supporting Parents Caring for a TechnologyDependent Child. National Primary Care Research & Development Centre, University of Manchester. Kirk, S. & Glendinning, C. (2002) Supporting ‘expert’ parents – professional support & families caring for a child with complex health care needs in the community. International Journal of Nursing Studies, 39, 6, 625–635. Limbrick-Spencer, G. (2000) Parents Support Needs – The Views of Parents of Children with Complex Needs. The Handsel Trust, Birmingham. Mukherjee, S., Sloper, P., Beresford, B. & Lund, P. (2000) Developing a Key Worker Service for Families with a Disabled Child: A Resource Pack. Social Policy Research Unit, York. Pederson, S., Parsons, H. & Dewey, D. (2004) Stress levels experienced by the parents of enterally fed children. Child: Care, Health & Development, 30, 5, 507–513. Petr, G., Murdock, B. & Chaplin, R. (1995) Home care for children dependent upon medical technology: The family perspective. Social Work in Health Care, 21, 1, 5–22. Puntis, J. (2001) Nutritional support at home and in the community. Archives of Disease in Childhood, 4, 295–298. Rhodes, A. (1999) Promoting Partnership – Supporting Disabled Children Who Need Invasive Clinical Procedures. Barnardos, Ilford.


1/21/2008 12:36:40 PM

72


Rollins, H. (2006) The psycho-social impact on parents of tube feeding their child. Paediatric Nursing, 18, 4, 9–22. Rouse, L., Herrington, P., Assey, J., Baker, R. & Golden, S. (2002) Feeding problems, gastrostomies & families: A qualitative pilot study. British Journal of Learning Disabilities, 30, 3, 22–128. Shared Care UK (1998) Towards a Healthy Future: Multi-Agency Working in the Management of Invasive and Life Saving Procedures for Children in Family Based Services. Marston Book Services, Abingdon. Sharpe, G. (2000) Assessment of eating and drinking in a child with a gastrostomy. British Journal of Nursing, 9, 12, 770–778. Sleigh, G. (2005) Mothers voice: A qualitative study on feeding children with cerebral palsy. Child: Care, Health & Development, 31, 4, 373–383. Smith, S., Camfield, C. & Camfield, P. (1999) Living with CP and tube feeding: A population based follow up study. Journal of Pediatrics, 135, 3, 307–310 Spalding, K. & McKeever, P. (1998) Mothers experiences caring for children with disabilities who require a gastrostomy tube. Journal of Pediatric Nursing, 13, 234–243. Stratton, R., Green, C. & Elia, M. (2005) Disease Related Malnutrition: An Evidence Based Approach to Treatment. CABI Publishing, UK. Taylor, J. (2000) Partnership in the community & hospital: A comparison. Paediatric Nursing, 12, 5, 28–30. Thorne, S., Radford, J. & Armstrong, E. (1997) Long term gastrostomy in children: Care giver coping. Gastroenterology Nursing, 20, 2, 46–53. Townsley, R. & Robinson, C. (1999) More than just a health issue: A review of current issues in the care of enterally fed children living in the community. Health & Social Care in the Community, 7, 3, 216–224. Townsley, R. & Robinson, C. (2000) Food for Thought? Effective Support for Families Caring for a Child Who is Tube Fed. The Norah Fry Research Centre, Bristol. Townsley, R. & Robinson, C. (2001) Short breaks for families caring for a disabled child with complex needs. Child & Family Social Work, 6, 1, 67–75. Watson, D., Townsley, R. & Abbott, D. (2002) Exploring multi-agency working in services to disabled children with complex healthcare needs & their families. Journal of Clinical Nursing, 11, 367–375.

Additional reading BAPEN (2005) British Artificial Nutrition Report: Trends in Artificial Nutrition in the UK 2000–2003. BAPEN, London Cortez-Pinto, H. & Correia, A. (2003) Long term management of percutaneous endoscopic gastrostomy by a nutrition support team. Clinical Nutrition, 21, 1, 27–31. Enrione, E. (2005) Medical & psycho-social experiences of family care-givers with children fed enterally at home. Journal of Parenteral & Enteral Nutrition, 29, 6, 413–419. Khair, J. (2003) Managing home enteral tube feeding for children. British Journal of Community Nursing, 3, 116–126.


1/21/2008 12:36:40 PM


Sleigh, G. & Brocklehurst, P. (2004) Gastrostomy feeding in cerebral palsy: A systematic review. Archives of Disease in Childhood, 89, 534–539. Tawfik, R. (1997) Caregivers’ perceptions following gastrostomy in severely disabled children with feeding problems. Developmental Medicine & Child Neurology, 29, 11, 746–751. Wright, C. (2004) Home enteral nutrition. Journal of Clinical Nursing, 18, 2, 1–12.


1/21/2008 12:36:41 PM

5

Caring for Children with Complex Disabilities Jean Teare

Key Points Children with complex disabilities require more care from parents or carers for daily activities of washing, feeding and mobilising than non-disabled children Multiple agencies and professionals are often involved in the care of children with complex disabilities There are financial, social and physical demands linked to caring for children with complex disabilities, which can affect the well-being of the whole family More children are surviving childhood with complex disabilities and therefore require transitional care arrangements to transfer smoothly from children’s to adult services

Introduction Children with disabilities can be defined in various ways according to purpose and viewpoint. Thurgate & Warner (2005) offer an overview of some of the terminology and models of disability that may be applied to children. Complex health needs, special needs and technology dependent are terms that may be associated with disabled children Caring for Children with Complex Needs in the Community © 2008 Blackwell Publishing. ISBN: 978-1-405-15177-1



75

1/21/2008 9:56:34 AM

76


particularly when health, social services or education services are involved with the child. The medical model of disability focuses on the child’s abnormality from what is considered normal, while a social model of disability suggests societal and environmental factors present barriers that prevent the child having their needs met (Morris, 1999). There are elements within both points of view that can contribute to a definition of disability. The Disability Discrimination Act (1995) refers to childhood disability as a physical or mental impairment that has a substantial and long term adverse effect on normal day-to-day activities. This definition reflected the World Health Organization (WHO) definition of 1981, which referred to impairment of ability (WHO, 1981); however, the updated WHO definition of disability (WHO, 2001) considers biology with individual and social functions, giving a more progressive and multi-faceted view of disability. Integration therefore of the social and medical models of disability are advocated by Thurgate & Warner (2005), to give a joint health and social service perspective and promote integrated working practices for children with disabilities (Department of Health (DH), 2004). The Family Resources Survey report (Department of Work and Pensions, 2004–5) identifies 570 000 disabled children in England, but not all these children would have complex needs. The statistics do not interpret the level of need the child may have, although they do identify the types of difficulties children have. Varying surveys and research studies have tried to identify the numbers of disabled children with complex needs, but the problem is that children may be grouped in several categories, for example technology dependent, or children with special needs. However the terminology of complex multiple disabilities appears to be increasing, as the requirement for services to collaborate to meet these particular needs is being called for in governmental policy (DH, 2004, Department for Education and Skills (DfES), 2005).

Reasons for increasing complex disability Specific reasons for the increasing number of children surviving with disabilities are due to increased knowledge and capability to treat infants born prematurely or with genetic disorders. Bracewell & Marlow (2005) suggest that the survival rate of extremely pre-term neonates is increasing but the disability rate is not decreasing, therefore more children have long term neurological and developmental disabilities. Neonatal intensive care has contributed to survival of children with


1/21/2008 9:56:35 AM

Caring for Children with Complex Disabilities 77

disabilities (Pharoah et al., 1996) and improved paediatric health care has increased the life span of children with degenerative and genetic disorders (Parkes & Clarke, 2006). Typical childhood disabilities that have considerable impact upon function and development of children include cerebral palsy, spina bifida, muscular dystrophy, spinal muscular atrophy, metabolic disorders and genetic syndromes and disorders (Parkes & Clarke, 2006). Some conditions will result in early death, but others will affect the child throughout childhood into adulthood, requiring specialist services to maintain as normal a lifestyle as possible. Care required by children with disabilities will vary according to the severity or complexity of their condition. Parents expect to carry out parental caring activities for young children and babies, but the care for disabled infants and children often involves more care than for nondisabled children. Roberts & Lawton (2001) looked at the records of 40 000 severely disabled children to identify the extra care needs required by children which exceeded care given to a non-disabled child. They found the majority of disabled children required extra assistance with multiple activities related to washing, dressing, feeding, care at night and day supervision. Focus groups with parents of disabled children found that on average each child needed extra care in six areas of daily life. An example given in their study was from parents who could not leave their child alone due to fears of choking or seizures (Roberts & Lawton, 2001). Specialised skills in tube feeding or behavioural management was often required by parents involving training and use of specialised equipment. The pressure of extra caring activities for parents continued past the time that children would normally be self-caring and medical crises were common, exacerbating parental stress along with the physical demands of caring.

Case example

Andrew

Andrew has cerebral palsy; he is 16 years old and lives with his mother and two brothers who are 14 years and 12 years old. His diagnosis is severe athetoid cerebral palsy with associated epilepsy, sleep disturbance and swallowing difficulties. He is fully dependent upon his mother for all his care and requires assistance with washing and dressing. He is incontinent, which is managed with incontinence pads. He cannot mobilise unaided so requires a wheelchair for upright positioning and mobility. He is fed via gastrostomy tube and requires enemas three times a week to prevent constipation. (Continued)


1/21/2008 9:56:35 AM

78


Case example

(Continued)

Andrew has limited cognitive ability so it is difficult for him to determine his own needs; however, he can communicate at a simple level through smiling, crying and some vocalisation. He responds to his own family and familiar carers. His home has been adapted with ceiling hoists in his downstairs bedroom and bathroom, to enable his mother to move him from his wheelchair for all his care. He attends a special school daily and a social service run respite centre for two nights per week; he also stays at the respite centre for one weekend per month. The support that Andrew and his family require is based on his physical needs, social support to help the family maintain a normal lifestyle, and financial support as Andrew’s mother is unable to work due to her caring responsibilities. The professionals involved with Andrew’s mother on a regular basis are a children’s community nurse, special school nurse, physiotherapist and social worker; other professionals are the teachers and carers who look after him when he is in school or the respite home, and medical staff involved are his paediatric consultant and dietician. Other specialist staff may be consulted according to any problems that arise with Andrew or the family. Andrew’s case illustrates some key issues that carers of disabled children have to cope with; these are: dealing with a large number of professionals and agencies, coping with the physical and emotional demands of full time care and considering the future care of the young person as they move from children’s services into adult care arrangements.

Dealing with multiple agencies/professionals Children with disabilities tend to have a range of care needs which cannot be met by one professional group, which means that a large number of professionals from different agencies may be involved with individual children and families. Sloper & Turner (1992) found that on average parents of disabled children had contact with 10 different professionals in one year; the range in the study was between 5 and 17. This poses problems in terms of communication and collaboration for both parents and professionals, and has been recognised as an area of poor practice in many studies and reports. Statham & Read (1998) found in


1/21/2008 9:56:36 AM


a survey of 70-day care reviews concerning provision of services to disabled children, that there was a lack of co-ordination between different agencies, which is supported by Bamford et al. (1997) who suggest that poor co-ordination can lead to deficiencies in the total care of the child and family. A common example of the potential for poor communication and coordination of care exists when a child moves from one area of care to another, typically from hospital to community services. Parkes & Clarke (2006) suggest there is a high risk of poor communication between different services. Some of the main findings in the Victoria Climbié inquiry (Laming, 2003) and the Bristol inquiry into heart surgery for children (DH, 2001a) refer to poor communication between services and professionals, which led to inadequate care and unnecessary deaths of children. Current health and social policy is directed towards this area of practice (DH, 2004; DfES, 2005) to try and improve collaboration and communication between professionals through joint working practices. Some of the difficulties that need to be addressed are tackling the cultural differences that exist between professional groups. Easen et al. (2000) refer to cultural differences as a lack of shared purpose between professionals towards families. Professionals had different views of what intervention was required, who would provide it, and whether it was a priority for the service. Another difficulty exists whenever professionals are unsure of the role of other colleagues (Audit Commission, 1994), which can result in duplication of work, or gaps in service provision. A contributory factor may be that reorganisation of services can change the function of professionals resulting in a lack of clarity about professional responsibility. One method of trying to improve differences between professional views is to locate professionals either in one team, or one place, so that joint appointments and assessments can be made (DfES, 2003). The family experience of working with multiple professionals highlights examples of poor collaboration through conflicting advice from different professionals (McConachie, 1999), or repeating stories or information given to different agencies. Mukherjee et al. (2002) suggest that parents may be used by professionals to communicate information between different services, for example, school carers and health carers, which can cause difficulties. The information may be distorted or misinterpreted, resulting in poor care for both child and family. Parents involved with multiple professionals are often confused about the role of individuals (Ross & Parkes, 2004), and may be overwhelmed by the amount of visits they receive or consultation with various professionals.


1/21/2008 9:56:36 AM

80


Use of a key worker for the family is advocated as an effective method of co-ordinating services and providing a single point of contact between the family and all the care they receive (DH, 2004; DfES, 2003). However Greco & Sloper (2004) found that less than one-third of families with a severely disabled child had access to a key worker. Although policy and legislation is now recommending provision of key workers, there is some differences in how the role may be interpreted. The Department of Education and Skills (2003) define key working in various ways; see Box 5.1.

Box 5.1 Key worker The key worker may be the person who Refers families to other professionals and services Is responsible for communicating with all agencies and professionals Has most consistent contact with the family Within a particular setting takes responsibility for the child

Therefore all professionals in a particular locality who may be working with disabled children need to define how they interpret the key worker role to ensure there is a shared vision of service provision. The principles of key working are: A single point of reference for information Co-ordination across and between agencies Working for the family rather than an agency Regular contact with the family Assistance for the family to access and receive relevant services Anticipation of service needs and regular reassessment of needs (DfES, 2003; Mukherjee et al., 1999). The Early Support initiative (DfES & DH, 2004) has developed from the principles contained in Together From the Start (DfES & DH, 2003), with the purpose of improving multi-agency support for disabled children and their families. Health, education and social services, along with voluntary agencies and service users are encouraged to meet to plan and improve existing services. Disabled children under the age of 5 years are included in the Early Support programme, which may


1/21/2008 9:56:36 AM


involve the use of portage home visitors (Morgan, 2006). Portage is a service based on home teaching and early intervention for pre-school children with learning disabilities; the aim is to help parents use direct instructional procedures to improve their child’s abilities (Cameron, 1997). The service positively monitors and evaluates the progress of children and directly links to future service requirements, and possible special educational needs assessment. Morgan (2006) advocates the use of portage home visitors as key workers for families, as they work in partnership with families and provide advice, information, and emotional support as necessary. Different models of multi-agency partnerships may be utilised to implement key worker services for disabled children. Greco et al. (2005) consider the effectiveness and costs of different services and found that parents received more information, and services were more unified in the care of children when key working methods were implemented. The DfES (2007) in their policy review of children and young people recommend that key workers are a source of support to families of disabled children, reducing stress and facilitating multi-agency meetings that can save time and numerous appointments for families. The development of children’s trusts as part of national legislation and policy (www.everychildmatters) recommends integration of all services that work with children. Pathfinder children’s trusts were set up in 2003 to discover ways of working that improved partnerships between services. Wheatley (2006) identifies that a third of the 35 pathfinder trusts highlighted disabled children’s services as a priority due to the need for greater levels of multi-agency working practices. The good practice guide (Wheatley, 2006) provides evidence of how different children’s trusts met the challenge of improving communication and co-ordination across agencies working with disabled children and families. Key work areas were identified around strategic planning, pooling budgets, joint working, sharing information, key working, transition to adult services and participation of parents and children in children’s trusts (Wheatley, 2006). Examples of good practice are identified and shared through such initiatives, though still allowing flexibility for each locality to decide how they can meet needs in their own area. Chapter 6 discusses multi-agency working in more depth.

Coping with the physical and emotional demands of caring Children with disabilities tend to be cared for at home predominantly by their parents, although in the majority of families, mothers will be


1/21/2008 9:56:36 AM

82


the main carer (Read, 2000). There are considerable financial, social, physical and emotional demands linked to the caring role for parents, which can affect the well-being of the whole family. Beresford (1994) raises some of the family issues parents have to face when caring for their disabled children, as some families will have more than one disabled child, particularly when a genetic disorder is the cause of the disability. Other parents will have to cope as a single parent taking on all the caring responsibilities for their child. The family circumstances are therefore a highly relevant influence on how well parents cope with their caring responsibilities.

Social factors Standard 8 of the Children’s National Service Framework (NSF) (DH, 2004) recognises that parents of children with complex disabilities may be excluded from ordinary family activities, due to the lack of accessible transport. Family trips or activities outside the home can be difficult to try and include the disabled child, which limits opportunities for the child to socialise with non-disabled children. Suitable qualified baby sitters are also difficult to find (Thurgate & Warner, 2005), resulting in social isolation for parents who cannot leave the child. Family and friends also have more limited availability to assist with child minding as they may not have the necessary skills to care for the child. Exclusion from mainstream services (DH, 2004) may occur due to the use of specialist services, which are often not local to the family. Health and education services in particular may necessitate parents and the child having to travel further to access hospital appointments and school. The exclusion from services can be perpetuated by worries about risks either to staff working in services, or to the disabled child through inadequate equipment or training of staff (DH, 2004). However, providers of services have a responsibility to review their policies and practice to improve access to services in line with the Disability Discrimination Act (1995) to improve access and inclusion for children with disabilities. In terms of Andrew’s family, it is difficult for the family to have a holiday abroad together because of Andrew’s disabilities. The family have tried to resolve this by having one week abroad to give Andrew’s mother and his brothers a rest from caring, while Andrew stays in his respite centre for a week. They then have another week at a holiday camp in the UK that caters for children with disabilities and the whole family go together. This has financial implications for the family who receive assistance from the Family Fund for the UK holiday.


1/21/2008 9:56:36 AM


However, this sort of planning allows the family to have some time socialising in a more relaxed environment with Andrew and also some important relaxation time without caring responsibilities.

Financial factors The Disability Rights Commission (2007) suggests disabled children have a higher risk than other children of growing up in poverty. Employment for mothers of disabled children is much lower: 16% compared to 61% for non-disabled children (Russell, 2004), which is a significant factor in the total income of families with children. Kagan et al. (1998) carried out a study with parents in 40 families with disabled children to explore difficulties; they found that parents wanted to work, but could not always fit employment around caring responsibilities. If they did work, the job was often below their skill level due to lack of appropriate child care and having to work hours around caring for their child. Benefits and tax credits are available to low income families, but Ward (1999) suggests they do not compensate for loss of earnings. In addition many families are unaware of all the potential sources of income they may be entitled to. The cost of caring for a child with severe disability has been estimated as costing three times more than caring for a non-disabled child (Dobson & Middleton, 1998). These costs are attributed to more expense on domestic products for washing, more clothes and bedding requirements, and more spent on travelling to hospital and specialist appointments, or visiting when the child is in hospital. In recognition of some of these issues, the Children’s NSF (DH, 2004) recommends that financial strategies should be included in children’s trust plans to improve the income of families with disabled children: some of these are detailed below; see Box 5.2. Box 5.2

Financial strategies

Strategies should include Use of special educational needs and disability strand of the general Sure Start grant Promoting use of direct payments to parents to organise their own child care Giving information to parents about what support is available Giving information to parents about benefits, and assistance in applying for benefits (DH, 2004, p. 10).


1/21/2008 9:56:36 AM

84


Physical factors The care demands upon parents looking after their disabled children can be physically demanding depending on the type and the amount of care required. In general parents have difficulty in accessing informal support networks in the shape of friends and family if their child has complex disabilities, which can result in continuous caring activities with no opportunity for a break or adequate rest. It therefore falls to professional services to offer support to parents in the shape of respite care, which can provide relief of stress for parents and opportunities for therapy for children. The Carers and Disabled Children Act 2000 (DH, 2001b) states that carers have the right to be assessed for support to provide a break from caring. Initially this was the responsibility of social services (DH, 1999) but increasingly health services have become more involved with respite services due to the health needs of children with complex disabilities. Thurgate (2005) examined the literature dealing with respite services for children with complex needs and found that poor sleep and assistance with everyday activities were the most common characteristics of children accessing respite. However more research into the benefits and use of varying types of respite is needed to ensure respite care is appropriate for carers and children. Miller (2002) discusses the various types of respite care services that are available for children and parents, which fall into three categories; see Box 5.3. Box 5.3

Types of respite care services

Institutional respite care hospital ward, residential care setting or hospice Shared care/link family formal arrangements with another family Home-based respite provided by professional and non-professional carers

Each type of care has advantages and disadvantages; hospital care can be reassuring for parents as nurses are skilled carers and the setting can be accessed quickly in a crises situation, but is not really a suitable environment for children who are not ill. Shared care is beneficial as long term relationships can develop between the carer family and the family


1/21/2008 9:56:36 AM


requiring respite, plus there is the potential for flexible arrangements between the families. However there is a shortage of such carers; Thurgate (2005) identifies that there are difficulties in finding and training carers due to some of the complex care needs that children require. Home-based care is convenient to families, but may not give the parents a complete break as they are usually still present in the home, so are aware of all caring activities. Respite care or short breaks can consist of a mixture of these options for the child and family, depending on the nature of care required and amount of hours required. Respite care in general remains limited and can be patchy depending on where the child and family live, but the Children’s NSF determines that all carers who require short term breaks should have access to them. The Shared Care Network (Carlin et al., 2004) has produced guidance for local authorities and primary care trusts to give examples of the sort of respite care that can be delivered to families. A major difficulty with many social service respite units is that they may not be able to provide care for the nursing or medical procedures the child requires. Even though parents are non-professionals carrying out such care, professional services require protocols, guidance and training to ensure staff are competent and legally protected to deliver care in the social service workplace. Voluntary respite centres are also faced with the same problems, which may restrict options for children with complex disabilities. See Chapter 8, for more discussion of respite services. Andrew attends a social service respite centre for two nights per week and one weekend per month regularly; he also stays for a week break once in the summer and once in the winter. His mother feels this is the best option for Andrew as it gives her and the other boys a chance to carry out normal social activities, and also gives Andrew some time away from his family. While at the respite centre he has the opportunity to meet other young people with disabilities. It is important for Andrew to socialise with others, as he will soon be transferring from children’s services to adult services.

Transitional care for young people with complex disabilities Transitional care refers to arrangements that are made to ensure a smooth transfer of care from child focused services to adult services. Children with complex disabilities will probably be involved with health, education and social services that are provided only for children, so the young person becomes ineligible for these services once


1/21/2008 9:56:36 AM

86


they reach a particular age. The age range varies between 16 and 19 years, but the main point is that after this age young people will be assessed by adult services, which will provide appropriate care if required. Legal guidance for the transitional process is provided by the Disabled Persons Act 1986, which requires that young disabled people have a future needs assessment carried out at 14 years of age. The code of practice on the identification and assessment of special educational needs (Department for Early Education, 1994) supports the legislation by providing advice on the process of transition for all the children who have a Statement of Special Educational Needs. A review meeting will be held at the child’s school involving the child, their parents, and all agencies involved in the child’s care. The aim of the meeting is to consider what the future needs of the child are in six key areas; see Box 5.4. Box 5.4

Future needs of child

Key areas are Careers/vocational Academic Health Independence/self-help skills Family/living arrangements Disability benefits/services Thurgate (2006) suggests the young person should receive support and assistance with communication to enable them to participate in the meeting about their future needs. Even severely impaired young people may be supported at a simple level to communicate their wishes, and be involved in the decisions being made about their care. The reality of transferring to adult services for young people with complex disabilities will involve considerable changes in the lives of families. Respite care that has been provided for carers may not be available, meaning that the only option for young dependent people is residential care as an alternative to care by parents. Also hospital care in adult services may not be as family friendly as paediatric services, where arrangements may have allowed direct access to paediatric wards and accommodation if necessary for a parent or carer. Adult hospital wards are unlikely to offer this service and be less flexible with visiting arrangements. Consequently parents may not be as directly


1/21/2008 9:56:37 AM


involved in decision making or treatment options, as the young person is now being treated as an adult. Parents may have difficulty in accepting these changes due to comparisons between levels of care from one service to another. A key worker for the young person and family can assist with the level of change that will occur, thereby preparing carers for change and also helping to communicate between child and adult services. The transition period is therefore an opportunity for services to plan and prepare for how the needs of the young person with disabilities can be met. The Commission for Social Care Inspection (CSCI) (2007) carried out a study looking at the experiences of young people with complex needs between 14 and 19 years of age and their families who were transferring from child to adult services. They found that young people with complex needs were not offered the same levels of care and social activities in adult services that they had received in children’s services. However they identified six key areas as necessary for successful transition between services; see Box 5.5.

Box 5.5

Key areas necessary for successful transition

Commitment – priority in caseload of services, with time allocated to develop resources Young people and families fully involved in the process Effective strategic planning and commissioning – based on analysis of 14 year olds already receiving support from children’s services Multi-agency approach – using protocols, systems and processes, including lead professional A co-ordinated person-centred planning process – encouraging direct payments Monitoring system Commission for Social Care Inspection (2007), pp. 47–48

To achieve these key areas of practice, the report recommends that directors of adult social services work in partnership with directors of children’s social services to assess how transitional care is arranged in their locality; also that central government co-ordinates policies to support joint work (CSCI, 2007). Transitional care arrangements are an important feature of caring for children with complex disabilities; if successful they will prevent


1/21/2008 9:56:37 AM

88


feelings of abandonment from families. Care that has been provided regularly from children’s services, for example hospital care, if withdrawn suddenly, can cause anxiety and stress to the child and family who are dealing with unfamiliar staff and environments. Warner (2006) emphasises the importance of preparation when changing a child’s routine to reduce stress through gradual introduction to new services. The Royal College of Nursing Adolescent Health Forum (RCN, 2004) provides a transition guidance checklist for health professionals to assist transitional care arrangements through three stages, early, middle and late. Using this as a planned approach aims to ensure transitional care is a therapeutic process rather than just administrative. However co-ordination of transitional care arrangements is necessary between health, education and social services to ensure all services are aware of plans involving the child and family. Children and young people with complex disabilities are therefore a specific group that require co-ordinated care from a number of agencies to meet their health, social and educational needs. Factors that contribute to the complex nature of caring include the severity of the child’s condition, the multiple assessment of needs from several services, and the continuity of care requirements. Families negotiate with services but ultimately take on many caring demands which may involve learning particular caring skills to provide care for their children. They then have to deal with transfer of care to adult services and continue their caring responsibilities past childhood into adulthood. While this may apply to children with other medical conditions, the physical demands of caring for children with complex disabilities is an ongoing feature of care that necessitates respite or short breaks for carers. Co-ordination and collaboration of services with the child and family can involve complex procedures and processes to meet these needs, meaning that service arrangements may be complex rather than the needs of the child. Summary Children with complex disabilities have a variety of physical, social and educational needs that impact on them and their family Family carers take on the bulk of caring responsibilities requiring assessment for respite to support them as carers Co-ordination and collaboration between multiple services and professionals is necessary to meet the needs of children with complex disabilities


1/21/2008 9:56:37 AM


Useful website www.everychildmatters.gov.uk/aims/childrenstrusts

References Audit Commission (1994) Seen But Not Heard: Coordinating Community Child Health and Social Services for Children in Need. HMSO, London. Bamford, D., Griffith, H. & Kernohan, G. (1997) Analysis of consumer satisfaction with cerebral palsy care. British Journal of Social Work, 27, 605–614. Beresford, B. (1994) Positively Parents: Caring for a Severely Disabled Child. Social Policy Research Unit, University of York. Bracewell, M. & Marlow, N. (2005) Neurological and developmental disability at 6 years of age following extremely pre-term birth. New England Journal of Medicine, 352, 9, 19. Cameron, R. (1997) Early intervention for young children with developmental delay: The portage approach. Child: Care, Health and Development, 23, 1, 11–27. Carlin, J., Morrison, J., Bullock, J. & Nawaz, S. (2004) All Kinds of Short Breaks. Shared Care Network, DfES, London. Commission for Social Care Inspection (2007) Growing Up Matters. Better Transition Planning for Young People with Complex Needs. CSCI, London. Department for Early Education (1994) The Identification and Assessment of Special Educational Needs. HMSO, London. Department for Education and Skills & Department of Health (2003) Together From the Start. Practical Guidance for Professionals Working with Disabled Children (Birth to Third Birthday) and their Families. DfES, London. Department for Education and Skills & Department of Health (2004) Early Support; Professional Guidance. DfES, Nottingham. Department for Education and Skills (2005) An Overview of Cross Government Guidance. HM Government, London. Department for Education and Skills (2007) Policy Review of Children and Young People – A Discussion Paper. HM Treasury. The Stationery Office, London. Department of Health (1999) The Government’s Objectives for Children’s Social Services (Quality Protects – Transforming Children’s Services). The Stationery Office, London. Department of Health (2001a) The Report of the Public Inquiry into Children’s Heart Surgery at The Bristol Royal Infirmary 1984–95. Learning from Bristol. The Stationery Office, London. Department of Health (2001b) The Carers and Disabled Children Act. The Stationery Office, London. Department of Health (2004) Standard 8 – disabled children and young people and those with complex health needs. In: National Service Framework for Children. DH, London. Department for Work & Pensions (2004–5) The Family Resources Survey. Available at: www.dwp.gov.uk/asd/frs The Disability Discrimination Act (1995) HMSO, London.


1/21/2008 9:56:37 AM

90


Disability Rights Commission (2007) The Disability Agenda – Priorities. Bringing an End to Child Poverty. The Disability Rights Commission, London. The Disabled Persons Act (1986) HMSO, London. Dobson, B. & Middleton, S. (1998) Paying to Care: The Cost of Childhood Disability. York Publishing Services (Findings 748). Easen, P., Atkins, M. & Dyson, A. (2000) Inter-professional collaboration and conceptualisation of practice. Children and Society, 14, 355–367. Greco, V. & Sloper, P. (2004) Care co-ordination and key worker services for disabled children: Results of a UK-wide survey. Child: Care, Health & Development, 30, 13–20. Greco, V., Sloper, P., Webb, R. & Beecham, J. (2005) An Exploration of Different Models of Multi-Agency Partnerships in Key Worker Services for Disabled Children: Effectiveness and Costs. University of York. Kagan, C., Lewis, S. & Heaton, P. (1998) Caring To Work: Accounts of Working Parents of Disabled Children. Family Policy Centre (Findings 538), London. Lord Laming (2003) The Victoria Climbié Inquiry: Report of an Inquiry by Lord Laming. Available at: www.victoria-climbie-inquiry.org.uk/finreport/finreport.htm McConachie, H. (1999) Conceptual frameworks in evaluation of multidisciplinary services for children with disabilities. Child: Care, Health & Development, 25, 2, 101–113. Miller, S. (2002) Respite care for children who have complex healthcare needs. Paediatric Nursing, 14, 5, 33–37. Morgan, R. (2006) Guidelines for Key Working by Portage Home Visitors. DfES & National Portage Association. Morris, J. (1999) Hurtling Into a Void: A Research and Policy Review of Transition to Adulthood for Young People with Complex Health and Support Needs. Brighton: Pavilion Publishing. Mukherjee, S., Beresford, B. & Sloper, P. (1999) Unlocking Key Working. Joseph Rowntree Foundation. The Policy Press. Bristol. Mukherjee, S., Lightfoot, J. & Sloper, P. (2002) Communicating about pupils in mainstream school with special health needs: The NHS perspective. Child: Care, Health & Development, 28,1, 21–27. Parkes, J. & Clarke, S. (2006) Children with complex motor disability. In: A Textbook of Children’s and Young People’s Nursing (eds A. Glasper & J. Richardson), pp. 371–388. Churchill Livingstone Elsevier, Edinburgh. Pharoah, P., Platt, M. & Cooke, T. (1996) The changing epidemiology of cerebral palsy. Archives of Disease in Childhood, 75, 169–173. Read, J (2000) Disability, the Family & Society. Open University Press, Buckingham. Roberts, K. & Lawton, D. (2001) Acknowledging the extra care parents give their disabled children. Child: Care, Health & Development, 27, 4, 307–319. Ross, A. & Parkes, J. (2004) Making doors open: caring for families of children with severe cerebral palsy. Paediatric Nursing, 16, 5, 14–18. Royal College of Nursing (2004) Adolescent Transition Care: Guidance for Nursing Staff. Adolescent Health Forum, London. Russell, P. (2004) ‘Disabled Children, their Families and Child Poverty’. Briefing paper for End Child Poverty Campaign/Council for Disabled Children. Sloper, P. & Turner, S. (1992) Service needs of families of children with severe physical disability. Child: Care, Health & Development, 18, 5, 259–282.


1/21/2008 9:56:37 AM


Statham, J. & Read, J. (1998) The pre-school years. In: Growing Up with Disability (eds C. Robinson & K. Stalker), pp. 57–72. Jessica Kingsley Publishers, London. Thurgate, C. (2005) Respite for children with complex health needs: Issues from the literature. Paediatric Nursing, 17, 3, 14–18. Thurgate, C. (2006) Transition to adulthood. In: Meeting the Needs of Children with Disabilities. (ed. H. Warner), pp. 141–147. Routledge, London. Thurgate, C. & Warner, H. (2005) Living with disability: Part 1. Paediatric Nursing, 17, 10, 37–42. Ward, L. (1999) Supporting disabled children and their families. Children and Society, 13, 394–400. Warner, H. (2006) Meeting the Needs of Children with Disabilities. Routledge, London. Wheatley, H. (2006) Pathways to Success. Good Practice Guide for Children’s Services in the Development of Services for Disabled Children. Council for Disabled Children, London. World Health Organization (1981) International Classification of Impairments, Disabilities and Handicaps. WHO, Geneva. World Health Organization (2001) International Classification of Functioning, Disability and Health (ICF). WHO, Geneva.


1/21/2008 9:56:37 AM

6

Multi-Agency Care for Children with Complex Needs Mary Law

Key Points Policy and good practice highlight that professionals and services should work together more collaboratively when caring for children and families with multiple needs Examples of integrated working include use of the Common Assessment Framework, lead professionals or key workers and Team Around the Child practices Specialist services that contribute and may have to collaborate with generic services for children with complex needs include portage services, child development centres and specific professionals responsible for safeguarding children

Introduction Parents of children with disabilities or complex needs overwhelmingly prefer agencies engaged in providing services for their child to work together collaboratively and in an effective manner (Carter et al., 2007). This recent confirmation supports earlier findings from studies by Noyes (1999) and Mukherjee et al. (2000) who suggest collaborative Caring for Children with Complex Needs in the Community © 2008 Blackwell Publishing. ISBN: 978-1-405-15177-1



93

1/21/2008 9:56:55 AM

94


ways of working can improve the experience of service provision to families. This has been acknowledged by the Government following the publication of Lord Laming’s report (2003) of the Inquiry into the death of Victoria Climbié, and the clear evidence that poor or nonexistent communication between agencies contributed to Victoria’s death. Evidence of the Government’s commitment to improving outcomes for all children and young people was set out in the Green Paper Every Child Matters (Department for Education and Skills (DfES), 2003). This was followed in 2004 by two further documents both highlighting the importance of multi-agency and interagency working and co-operation: the National Service Framework for Children, Young People and Maternity Services (Department of Health (DH), 2004) and Every Child Matters: Change for Children (ECM:CfC) (DfES, 2004). The Children Act 2004 provided the legislative framework to enforce these policies. The ECM:CfC (DfES 2004) has set a national deadline of March 2008, for local change programmes to be implemented, encompassing the five key priority outcomes: Be healthy Stay safe Enjoy and achieve Make a positive contribution Economic well-being The five outcomes relate to all children, which include children with disabilities, and those with complex needs, who may require more assistance to achieve these outcomes. An essential component of the Government’s strategy is to shift the focus from dealing with the consequences of difficulties in children’s lives to preventing things from going wrong in the first place. It is envisaged that the establishment of integrated children’s trusts (DfES, 2004) will minimise poor communication through the use of integrated processes such as the Common Assessment Framework (CAF). The need for interagency collaboration is vital in child protection issues, which is especially relevant to children with disabilities or complex needs due to their vulnerability to child abuse. Westcott (1998) suggests children with disabilities are often at more risk due to their inability to communicate such issues, and their interaction with many services and individuals that could take advantage of vulnerable children. A case example will be used to highlight some of these issues.


1/21/2008 9:56:56 AM

Multi-Agency Care for Children with Complex Needs 95

Case example

Jay

Jay has profound and multiple learning difficulties (PMLD) due to a specific neurological impairment at the age of 18 months caused by a preventable accident; she is now 3 years old. This has resulted in Jay having spastic quadriplegia and visual impairment. She is fed by a gastrostomy, and cannot communicate vocally although Jay responds to her parents with smiles. She is totally dependant on her parents and carers for all her daily care. There have been some concerns about Jay’s care by her parents as Jay has developed several pressure sores. Although these have been treated successfully, there is some concern about the level of care by the family. The children’s community nurses suggest that Jay spends the majority of her time in her cot when she is at home, and feel that her quality of life is compromised. The services and professionals involved with Jay are: children’s community nurses, health visitor, physiotherapist, portage worker, social worker, paediatrician and dietician. She also attends a nursery at a special school and receives respite care at a social service children’s unit.

Multi-agency working Children with complex needs or disabilities increasingly need care from a variety of professionals from different services. The child in the case example, Jay, receives care from health, social and education services despite the fact she is only 3 years old. In order for care to be effective professionals involved must communicate with each other to ensure consistency of care and to avoid problems such as multiple visits at the same time, and pressure on parents to repeat the same information on numerous occasions. Parkes et al. (2002) found that families of children with cerebral palsy were in contact on average with seven different services, resulting in poor co-ordination of care and occasionally duplication of care, while leaving other needs unmet. Problems can occur when a child moves from one care setting to another, for example from home care to nursery and then to a respite setting, as in Jay’s case. Different areas of the country have tried different approaches to overcome some of the difficulties experienced by parents and children. Watson et al. (2002) looked at the impact of multi-agency


1/21/2008 9:56:56 AM

96


working practices on families and offered a summary of definitions of joint working: Multi-disciplinary working – individual professionals provide care from a single agency with little interaction Interdisciplinary working – individual professionals from separate agencies carry out individual assessments, but meet to discuss goals Transdisciplinary working – focus of service delivery is holistic, starting from needs and wishes of family, not existing service provision They see professionals working together as positioned at any point along this continuum, but conclude that transdisciplinary working offers most benefits to families due to close partnership with families in assessing needs, and setting goals according to what the family identifies as a need. Varying models of team organisation are apparent in the care of children with complex needs and disabilities; child development teams and teams around the child are two examples. However the use of a key professional to co-ordinate services and care is related to better outcomes for families according to some studies which have evaluated the role of the key worker (Mukherjee et al., 1999; Liablo et al., 2001).

Child development teams Child development teams have been viewed as local specialist teams of professionals that work together to provide assessment and treatment for children with disabilities (McConachie et al., 1999). Many such teams are based in a child development centre and are composed of health and social care professionals, meaning that children may be seen by a variety of professionals according to their needs in the same locality, avoiding the need for multiple appointments. Collaboration between professionals is reported by McConachie et al. (1999) who found that 91% of child development teams in their survey held a case discussion after a child was seen. However, Yerbury (1997) notes that a feature of child disability services is their organisational diversity, particularly in relation to leadership and management of the team. Typically child development teams have been managed by paediatricians, but this is changing as more professionals from education and social services are being included in child development teams. Although communication between agencies is enhanced through


1/21/2008 9:56:56 AM


co-location of professionals, it may not always result in common goals and objectives if the management of the team is controlled by competing budgets and agendas (Yerbury, 1997). The solution may be in the creation of children’s trusts that are attempting to bring together all services working with children through joint commissioning (DfES, 2005).

Team around the child The Team Around the Child (TAC) model (Limbrick, 2003) describes a process of collaboration between services which integrates all care needs into a single pathway that is not discipline focused, but responds to family needs. The ECM:CfC glossary (DfES, 2004) refers to the TAC as a group of professionals that do not work together all the time, but are grouped together when required to give care to a particular child. Therefore professionals may be working in a range of different teams to support different children and families. The premise of the TAC is that it provides an individual and flexible response to specific needs of children through provision of relatively few practitioners who see the family regularly to provide support and care. The role of the lead professional or key worker remains an important component of the TAC to provide a collective view and response to the needs of the child and family. Although the team may be smaller and more discrete to the needs of the child, the lead professional has a responsibility to co-ordinate the agreed plan of action, ensuring that parents are fully informed and involved in the assessment and planning of care. Key principles of the TAC approach, according to Limbrick (2005), involve ensuring Parents are fully informed and involved The family access all relevant services Essential information is shared between professionals and the family All separate interventions are co-ordinated Collaboration exists between professionals involved

The lead professional ECM:CfC (DfES, 2004) recommends a lead professional to ensure services are co-ordinated effectively to achieve planned outcomes.


1/21/2008 9:56:57 AM

98


They should act as a single point of contact for the family, and reduce overlap and inconsistency in service provision. The lead professional may be from any of the services involved with the child and may be decided on the basis of relationship with the family, amount of contact with the family, or the person that has the necessary skills and knowledge required by the child and family to assess, and co-ordinate their care. Guidance for practitioners and managers is available from www.ecm.gov/leadprofessional, and sets out a broad framework of key responsibilities with suggestions for implementation of the role in practice. Some of the literature refers to key working rather than lead professional but the principles appear the same. However there appear to be differences in how the key worker role has developed particularly in social care services to disabled children. Greco et al. (2005) carried out an exploration of different models of multi-agency partnerships with key workers to assess the outcomes of varying key worker models for parents and children. Better outcomes were related to management of the key worker service, understanding of their role, and provision of training for the key worker role. Clear definitions and agreements between families and key workers, supported by written information, improved understanding by professionals doing the job and families receiving the service. The lead professional for Jay (case example) is the health visitor as she was known to the family before Jay’s accident and subsequent health and developmental difficulties. She had established a good working relationship with the family, so was able to use this as a basis for establishing the changing needs of the family and communicating these to other agencies who could contribute to Jay’s care.

Integrated working and assessment The success of integrated working depends upon effective partnership working across existing services and through multi-agency teams; between universal services (education and primary health care) and targeted at specialist services for those children and families at risk of poor outcomes especially those children with disabilities or complex needs. Partnership working must include active processes for identifying children and young people at risk of poor outcomes, and passing information to those delivering targeted support. Preventative services working in this way will be more effective in identifying concerns about significant harm as a result of abuse or neglect. However for children with complex needs, in most situations the need will be for additional services in relation to education, health,


1/21/2008 9:56:57 AM


behaviour, parenting or family support, rather than for intervention to protect the child or young person from harm. The approach to sharing information (which must be in accordance with general data protection principles) should be explained openly and honestly. Seeking consent should be the first priority. Practitioners in universal, targeted and specialist services should proactively inform children, young people and families, when they first engage with the service, about their policy on how information will be shared, with whom, and in what circumstances, and seek their explicit consent. Information which is not confidential may generally be shared where that is necessary, for the legitimate purposes of preventative work. Where information is confidential, and consent is refused, that should be respected, unless in the practitioner’s professional judgment on the facts of the case, the public interest justifies the sharing of information (DH 2003; NMC 2004; Dimond, 2005). An information sharing index forms part of the government’s plans to integrate services with an overall aim of improving contact and relevant information to all agencies working with a particular child or family (www.ecm.gov.uk/index). Wheatley (2006) describes some of the systems used by the pathfinder children’s trusts established to try out varying models of multi-agency collaboration, which included using computer systems based around the Common Assessment Framework (CAF) as an initial assessment to share and standardise information about children and families. The new systems hope to give more transparency in how services are allocated, both to professionals and to families of children with complex needs or disabilities. A national eCAF system is being tested at five pilot sites (DfES, 2006a) to become possible exemplars for future use of information technology to support the use of the CAF, with the overall aim of promoting integrated working across all agencies involved with children and families.

Common assessment framework The CAF is intended to enable practitioners in front-line services (such as children’s centres, extended schools, youth support, safeguarding, health and crime reduction) to work together, building on the needs of children and young people, using common processes that have been designed to create and underpin joint working. For the CAF to be effective there has to be an increased emphasis on integrated working across children’s services to identify and meet needs, so that support is focused around the children, young people and their families’ needs. The aim is to deliver early intervention to prevent problems escalating and


1/21/2008 9:56:57 AM

100 Caring for Children with Complex Needs in the Community

to increase the chances of a child or young person achieving good outcomes. A function of the CAF is to address multiple assessments from different agencies and providers of health or social care; see Table 6.1. Table 6.1 Examples of agencies, workers and their form of assessment Services

Agencies

Workers

Assessments

Health

Community and mental health services (CAMHS) Acute hospital trusts

Child psychologist CAMHS team members Children’s nurses Paediatricians Midwives Health visitors School nurses Children’s community nurses General practitioners

Health/social needs Risk Health needs Risk

Primary care trust

Local education Local education authority authority Special educational needs (SEN) services Education

Education welfare officer SEN co-ordinator Portage worker Teachers

Local authority/ Social services government Youth offending team (YoT) Police

Social worker YoT worker Police officers

Independent/ voluntary

Voluntary sector services Youth services Connexions

Health needs Risk

Statement of SEN Developmental Children in need ASSET

Youth worker Connexions worker

Asset is a structured assessment tool used by Youth Offending Teams (YOTs) in England and Wales on all young offenders who come into contact with the cirminal justice system. It aims to look at the young person’s offence or offences and identify factors or circumstances that may have contributed to their behaviour.

Key aims and principles of CAF CAF is intended to promote more effective, earlier identification of children’s additional needs and improve multi-agency working; see Table 6.2. Table 6.2 Key aims and principles of CAF Aims

Principles

A standard national approach Assessment to support earlier intervention Support the sharing of information Improve joint working and communication Rationalise assessment Support better referrals, where appropriate

A process supported by a standard form Holistic Focuses on needs and strengths Simple and practical Empowering and a joint process CAF cannot guarantee service provision

It is intended to provide a simple, non-bureaucratic process for a holistic assessment of a child’s needs, taking account of the individual,


1/21/2008 9:56:57 AM


family and community. It has been developed for use by practitioners in all agencies so that they can communicate and work more effectively together. Sections 10 and 11 of the Children Act 2004 identify the duty to co-operate to improve well-being and make arrangements to safeguard and promote the welfare of children below the age of 18, and young people over 18 who require certain services.

Components of CAF Pre-assessment checklist to help practitioners identify children who would benefit from a common assessment. A process for undertaking a common assessment, to help practitioners gather and understand information about the needs and strengths of the child, based on discussions with the child, their family and other practitioners as appropriate. A standard form to help practitioners record, and, where appropriate, share with others, the findings from the assessment discussion in terms that are helpful in working with the family to find a response to unmet needs (www.everychildmatters.gov.uk/caf). The form has three areas of assessment: Parents and carers Family and environment Development of child A copy is available from the Department for Education and Skills in the Common Assessment Framework for Children and Young People: Practitioners’ Guide (DfES, 2006b) and Common Assessment Framework for Children and Young People: Managers’ Guide (DfES, 2006c). The form is not intended to be used as a checklist, nor for all elements to be addressed equally; practitioners should consider each of the three areas, and address the relevant element for the child/young person at the time of assessment, focusing on the whole child/young person, for all agencies involved.

The three key steps of the CAF process 1 Preparation Discuss the CAF with the child or young person and/or their parent or carer. Check whether a common assessment already exists – if it does,


1/21/2008 9:56:57 AM


ask the child/young person or parent/carer for permission to see it. If available, then review and update if appropriate. Identify agencies working with the child and their family; decide if a common assessment would be useful. If so move on to the discussion stage having gained the consent of the child/young person or parent/ carer.

2 Discussion The common assessment form is simply a way of recording the discussion that a practitioner has with a child/young person and/or their parent/carer.

3 Service delivery The purpose of the common assessment is to lead to the next stage of intervention. Having undertaken a common assessment, there are three possible outcomes: No further action – the practitioner’s concerns were resolved and no further needs were identified Single agency support (may be multi-disciplinary) – the needs identified require action by child/young person and/or their parent/carer, or by the practitioner’s own agency Multi-agency support – the needs identified require multi-agency intervention. A lead professional needs to be identified if more than one practitioner is involved (DfES 2006d). Any outcome or part of an outcome could include action by the child/ young person and/or their parent/carer. Following the assessment the practitioner (or lead professional if one is identified), should deliver their actions and/or access other services to address the identified needs. Common assessment cannot offer a guarantee that services will be delivered as resources to pay for services are finite; however the likelihood that services will be delivered should increase considerably as decisions are supported with evidence. Table 6.3 provides an example of part of the CAF documentation applied to the case example, which assesses the needs of Jay and her family.


1/21/2008 9:56:57 AM


Has gastrostomy in situ – current feeding regime is monitored and supervised by dietician at the child development centre during monthly check. Mum can manage all gastrostomy feeds and care. Feeding pump and equipment supplied by nutrition company and delivered to home Jay has developmental delay. She responds to the sound of parents’ voices by smiling. She does not attempt speech or respond to requests; she is unable to carry out activities. She can indicate pleasure through smiling. She cries or moans when she is unhappy. Understanding is extremely limited Jay recognises her family members and likes to listen to music and songs like the Lion King CD. Jay also seems to like the feel of a silk scarf which she uses as a comforter

Jay is totally dependent on her carers for all activity and amusement; she is generally placid in her temperament but can become very distressed, when she starts to bite her hand. She does not sleep through the night but becomes noisy and restless, requiring some attention in the night

Physical development Nourishment; activity; relaxation; vision and hearing; fine motor skills (drawing, etc.); gross motor skills (mobility, playing games and sport, etc.)

Speech, language and communication Preferred communication, language, conversation, expression, questioning; games; stories and songs; listening; responding; understanding

Emotional and social development Feeling special; early attachments; risking/actual self-harm; phobias; psychological difficulties; coping with stress; motivation, positive attitudes; confidence; relationships with peers; feeling isolated and solitary; fears; often unhappy

Behavioural development Lifestyle, self-control, reckless or impulsive activity; behaviour with peers; substance misuse; antisocial behaviour; sexual behaviour; offending; violence and aggression; restless and overactive; easily distracted, attention span/concentration

(Continued)

Spastic quadriplegia and visual impairment – attends child development centre monthly for ongoing assessment and monitoring of condition Jay has developed pressure sores on her heels and back of her head on two occasions; she also has a sore on her right hand on occasions due to self-biting behaviour

1. Development of unborn baby, infant, child or young person Health General health Conditions and impairments; access to and use of dentist, GP, optician; immunisations, developmental checks, hospital admissions, accidents, health advice and information

CAF assessment summary: strengths and needs Consider each of the elements to the extent they are appropriate in the circumstances. You do not need to comment on every element. Wherever possible, base comments on evidence, not just opinion, and indicate what your evidence is. However, if there are any major differences of view, these should be recorded too.

Table 6.3 CAF documentation applied to Jay


1/21/2008 9:56:57 AM


Housing, employment and financial considerations Water/heating/sanitation facilities, sleeping arrangements; reason for homelessness; work and shifts; employment; income/benefits; effects of hardship

Wider family Formal and information support networks from extended family and others; wider caring and employment roles and responsibilities

3. Family and environmental Basic care, ensuring safety and protection Illness, bereavement, violence, parental substance misuse, criminality, anti-social behaviour; culture, size and composition of household; absent parents, relationship breakdown; physical disability and mental health; abusive behaviour

Guidance, boundaries and stimulation Encouraging self-control; modelling positive behaviour; effective and appropriate discipline; avoiding over-protection; support for positive activities

Emotional warmth and stability Stable, affectionate, stimulating family environment; praise and encouragement; secure attachments; frequency of house, school, employment moves

2. Parents and carers Basic care, ensuring safety and protection Provision of food, drink, warmth, shelter, appropriate clothing; personal, dental hygiene; engagement with services; safe and healthy environment

Table 6.3 Cont’d

Some financial difficulties as dad was out of work for some time due to the stress of Jay’s accident and illness. This has resulted in some rent arrears and arrears with gas and electricity bills. Currently the disability living allowance has been applied for and the services contacted to allow more time for payment of arrears

No extended support available to the family

Jay’s parents have found it difficult to adapt to caring for Jay’s disabilities and are still coming to terms with the loss of what they see as their healthy daughter. It is particularly tiring for mum to cope with three young children and try to attend all of Jay’s appointments and keep up with all her special needs. The boys are fond of Jay and try to play with her occasionally but are rather boisterous with her. Mum tends to put Jay in her cot after nursery to try and keep her safe and also allow her to get some rest. Mum will then get her up again later to be with the family but sometimes Jay is asleep so she leaves her; this means that Jay may be spending a lot of time in her cot

Jay’s parents provide a loving environment for her, although they also have two other siblings to consider. Dad works long hours and is not at home very much when Jay is awake; she is usually in bed when he gets home

Mum provides the majority of all Jay’s care. She gets her up in the morning, washes and dresses Jay and checks her feeding tube. Jay wears nappies and is unlikely to become continent in the future. Mum gets her ready for transfer to the nursery and packs her bag with all her equipment for the morning. Jay returns home at 1 pm and requires continuing care


1/21/2008 9:56:58 AM


Reduce the amount of time Jay is spending in her cot and prevent further self injury and pressure sores occurring Offer more support to Jay’s mother in the form of respite care Check if there are any more financial benefits that could help the family Review sleeping position and cot that is used by Jay; assess whether more pressure relieving equipment is required – CCN Monitor condition of skin – CCN Monitor amount of time Jay spends in cot – Mother & HV Portage worker to plan activities to manage biting behaviour through distraction and stimulation of Jay. Ensure all professionals and family are aware of activities – portage visitor & health visitor Negotiate further respite care form the social services respite unit – social worker

Action plan (in order of priority) Who will do this? By when? Agreed review date How will you know when things have improved?

Strengths are that the family has a close relationship with each other and Jay remains part of this network. Additional needs are support of mum in her care of Jay to allow her more time to be with her other children at weekends and in the evening; also to give her more sleep as Jay has continuing needs overnight; she does not sleep through the night Risk of self harm is evident through self-biting behaviour of Jay which has resulted in wounds on back of right hand Risk of pressure sores is evident through time that Jay is spending in her cot without positional change; also lack of interaction during this time if Jay is in her cot from coming home from the nursery

Jay has a place at a special school nursery four mornings per week. A portage worker visits at home one day a fortnight. She has respite care one weekend every 6 weeks at a social service centre

What needs to change? (For example what outcomes, solutions and goals do the child/young person, parent/carer and you want to achieve)

What are your conclusions? (For example strengths, no additional needs, additional needs, complex needs, risk of harm to self or others)

Conclusions, solutions and actions Now the assessment is completed you need to record conclusions, solutions and actions. Work with the baby, child or young person and/ or parent or carer, and take account of their ideas, solutions and goals.

Social and community elements and resources, including education Day care; places of worship; transport; shops; leisure facilities; crime; unemployment; anti-social behaviour in area; peer groups, social networks and relationships


1/21/2008 9:56:58 AM


The needs identified using a CAF for Jay indicate that Jay is at risk of harm from pressure sores and self harming behaviour. This may be due to unsuitable positioning and bed equipment, or may be due to potentially neglectful care by parents. Jay’s mother is at risk of increased stress and tiredness related to the caring responsibilities she has to undertake in meeting the daily care needs for Jay, and this may be contributing to the increased time Jay spends in her cot. From this assessment the lead professional may request further specialised assessment by the children’s community nurses of Jay’s sleeping arrangements and specific risks to her skin; also further assessment of respite requirements by the social worker.

Suitability of using a common assessment The decision to undertake an assessment is a matter for professional judgement and should be undertaken when it will help the child or young person to achieve one or more of the ECM five priority outcomes. It should complement not duplicate existing assessments. It should be undertaken only when the child or young person or their parent or carer agrees. A common assessment is likely to be of most help when: There is reason to think that a child is not making the progress they should be at their age; this may relate to their health, welfare, behaviour, progress in learning or any other aspect of their well-being, but it is not clear what the underlying causes are or what would help. The needs are unclear, or broader than one service can address, or it is likely the support of another agency is needed to help meet identified needs. A common assessment should not be used: For children who are progressing well, or have needs that are being met. If it is unlikely to add value (if the child’s needs are clear and can be met by the child or their parent or carer, or by the assessing agency) as long as practitioners have looked beyond the presenting problem. If there is reason to believe that the child is a child in need, which includes being at risk of significant harm; in this case Local Safeguarding Children Board (LSCB) procedures must be followed immediately.


1/21/2008 9:56:58 AM


Safeguarding children with complex needs The Green paper Every Child Matters (DfES, 2003) also introduced a safeguarding approach to the protection of children. As a result Working Together to Safeguard Children: A Guide to Inter-agency Working to Safeguard and Promote the Welfare of Children (DH, 1999) was updated. The original document set out how all agencies and professionals should work together to promote children’s welfare and protect them from abuse and neglect. It addressed staff in health and education services, the police, social services, the probation service and others whose work brought them into contact with children and families and was relevant to those working in the statutory, voluntary and independent sectors (DfES, 2006e). The Children Act 2004 specifies how different organisations have a ‘duty’ towards each other and specifies ‘requirements’ of local authorities, with the emphasis on working together and co-operating in order to improve the well-being of children and young people, to safeguard and promote their welfare. A common language and assessment framework is necessary to prevent misunderstanding and poor collaboration, therefore the DfES (2006e) has provided detailed guidance to ensure all organisations fulfil their responsibilities to participate in safeguarding children. Each local authority had to appoint a director of children’s services as the lead professional, with a key responsibility of setting up LSCBs by 2006 to replace area child protection committees (ACPCs), which were not statutory bodies. The new LSCBs, which have been in operation since April 2006 are the key statutory mechanisms for agreeing how organisations will co-operate to promote and safeguard the welfare of children in the local area. The primary function of the LSCB is to co-ordinate what is done by individuals and organisations to safeguard children and to ensure the effectiveness of actions undertaken in this area, indicating the priority of governmental policy to ensure better communication between professionals working in different organisations. LSCB members are drawn from representatives at a senior level of every agency involved in the protection of children. The purpose is to ensure the existence of joint agency and management policies through provision of a forum for developing, monitoring, and reviewing child protection policies and practices. Ultimately the role of LSCBs is to make sure all local services work together well to promote and safeguard children’s and young people’s welfare. The work of professionals should be informed by an awareness, appropriate to their level of experience and responsibility, of legislation


1/21/2008 9:56:58 AM


concerning the well-being of children and young people expressed in the Disability and Discrimination Act (2005) Special Educational Needs and Disability Act (SENDA) (2001) Codes of practice (profession specific) Race Relations Act as amended (2000) DfES guidance Safeguarding Children in Education Jay is potentially at risk of neglectful care resulting in pressure sores and skin breakdown; also being left in her cot without stimulation for long periods. The health visitor as the lead professional for Jay has a duty to monitor the situation to ensure that Jay’s welfare is protected and that her mother is supported to continue caring for Jay. Support is co-ordinated and delivered by the health visitor, children’s community nurse and portage worker in the case scenario.

Portage Portage is a home-visiting educational service for pre-school children with additional support needs and their families. The first scheme was developed in Portage, Wisconsin, USA in the early 1970s to meet the needs of the young children living in rural communities. Since being introduced into the UK, the success of the approach has led to an increasing number of services being developed nationally. Currently the National Portage Association of Britain has 140 registered services (www.portage.org.uk/whatPortage.php). The aim of portage is to offer early intervention and support to encourage development of young children’s play, communication and relationships, for those children who may be developmentally delayed (Cameron, 1997). Support offered through portage is based on the principle that parents are key figures in the care and development of their child; therefore the aim is to help parents become more confident in their role. The portage system is delivered by home visitors who work alongside parents offering practical help and ideas to make learning fun for all the family and encourage a child’s interests. The portage visitors may be teachers, speech or occupational therapists, nursery nurses, health visitors, community nurses, social workers, parents or volunteers with relevant experience. Everyone involved in providing the service receives additional training from the National Portage Association.


1/21/2008 9:56:58 AM


Families are visited regularly at home by their trained portage home visitor and they are encouraged to share their understanding of their child’s individual abilities and support needs. Profiles may help to identify strengths and goals for future learning when portage visits begin. The emphasis involves building on positive achievements related to the child’s activities led by parents to ensure that the support is relevant. Portage offers support which respects each family and their own individual priorities, which can be adapted to suit individual needs. Fundamental principles of the portage model are: All children and parents should be valued for their unique qualities Parents play the key role in supporting their young child’s development Services for families are most useful when they support everyday living and are delivered in a child’s natural environment Building on abilities and strengths, rather than focusing on difficulties best supports for children’s learning and enjoyment (www. portage.org.uk/whatPortage.php) Summary Every Child Matters guidance recommends that professionals should work across service and organisational boundaries to provide seamless and collaborative care to children who require care from more than one service Varying models of service provision exist to provide specialist care to children with complex needs and disabilities; however common processes such as the Common Assessment Framework can help reduce bureaucracy and improve collaboration All professionals working with children and families have a responsibility to be aware of changing policies and legislation that relate to safeguarding children and sharing information with other agencies

Useful websites CAF – Guidance and training materials www.everychildmatters.gov.uk/caf CAF – Integrated working fact sheets www.everychildmatters.gov.uk/resources-and-practice


1/21/2008 9:56:58 AM


CAF – Lead professional guidance and training materials www.everychildmatters.gov.uk/leadprofessional Confidentiality http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/ PublicationsPolicyAndGuidance/DH_4069253 Laming Report on Victoria Climbié http://www.victoria-climbie-inquiry.org.uk/finreport/finreport.htm

References Cameron, R. (1997) Early intervention for young children with developmental delay: the portage approach. Child: Care, Health & Development, 23, 1, 11–27. Carter, B., Cummings, J. & Cooper, L. (2007) An exploration of best practice in multi-agency working and the experiences of families of children with complex health needs. What works well and what needs to be done to improve practice for the future? Journal of Clinical Nursing, 16, 527–539. Department for Education and Skills (2003) Every Child Matters – Green Paper. The Stationery Office, Norwich. Department for Education and Skills (2004) Every Child Matters, Change for Children. The Stationery Office, Norwich. Department for Education and Skills (2005) Children’s trusts. http://www. everychildmatters.gov.uk/aims/children’strusts/ Department for Education and Skills (2006a) e-Enablement of the Common Assessment Framework. Every Child Matters, London. Department for Education and Skills (2006b) Common Assessment Framework for Children and Young People: Practitioners’ Guide. The Stationery Office, Norwich. Department for Education and Skills (2006c) Common Assessment Framework for Children and Young People: Managers’ Guide. The Stationery Office, Norwich. Department for Education and Skills (2006d) The Lead Professional: Manager’s Guide. Integrated Working to Improve Outcomes for Children and Young People. The Stationery Office, Norwich. Department for Education and Skills (2006e) Working Together to Safeguard Children. The Stationery Office, Norwich. Department of Health (1999) Working Together to Safeguard Children: A Guide to Inter-agency Working to Safeguard and Promote the Welfare of Children. Department of Health, London. Department of Health (2003) Confidentiality: NHS Code of Practice. Department of Health, London. Department of Health (2004) National Service Framework for Children, Young People and Maternity Services. Department of Health, London. Dimond B (2005) Data protection rights and preserving confidentiality. British Journal of Nursing, 14, 17, 936–937. Greco, V., Sloper, P., Webb, R. & Beecham, J. (2005) An Exploration of Different Models of Multi-Agency Partnerships in Key Worker Services for Disabled Children: Effectiveness and Costs. Research Brief, No. RB656. Department for Education and Skills, London.


1/21/2008 9:56:58 AM


Liablo, K., Newman, T., Stephens, J. & Lowe, K (2001) A Review of Key Worker Systems for Disabled Children and the Development of Information Guides for Parents, Children and Professionals. Wales Office of Research and Development and Social Care, Cardiff. Limbrick, P. (2003) An Integrated Pathway for Assessment and Support. Interconnections, Worcester. Limbrick, P. (2005) Working Paper, available at: www.icwhatsnew.com/bulletin/ articles/TAC.pdf Lord Laming (2003) The Victoria Climbié Inquiry, Report of an Inquiry by Lord Laming. The Stationery Office, London. McConachie, H., Salt, A., Chadury, Y., McLachlan, A. & Logan, S. (1999) How do child development teams work? Findings from a UK national survey. Child: Care, Health & Development, 25, 2, 157–168. Mukherjee, S., Sloper, P., Beresford, B. & Lund, P. (2000) Developing a Key Worker Service for Families with a Disabled Child: A Resource Pack. Social Policy Unit, York. Mukherjee, S., Beresford, B. & Sloper, P. (1999) Unlocking Key Working. Policy Press, Bristol. National Portage Association: www.portage.org.uk/whatPortage.php Noyes, J. (1999) Voices and Choices: Young People Who Use Assisted Ventilation: Their Health, Social Care and Education. HMSO, London. Nursing & Midwifery Council (2004) The NMC Code of Professional Conduct: Standards for Conduct, performance & Ethics. NMC, London. Parkes J., Donnelly, M., Dolk, H. & Hill, N. (2002) Use of physiotherapy and alternatives by children with cerebral palsy: a population study. Child: Care, Health & Development, 28, 6, 469–477. Watson, D., Townsley, R. & Abbott, D. (2002) Exploring multi-agency working in services to disabled children with complex healthcare needs and their families. Journal of Clinical Nursing, 11, 367–375. Westcott H (1998) Disabled children and child protection, In: Growing Up With Disability (eds C. Robinson & K. Stalker), pp. 129–141. Jessica Kingsley Publishers, London. Wheatley, H. (2006) Pathways to Success. Good Practice Guide for Children’s Services in the Development of Services for Disabled Children. Council for Disabled Children, London. Yerbury, M. (1997) Issues in multidisciplinary teamwork for children with disabilities. Child: Care, Health & Development, 23, 1, 77–86.


1/21/2008 9:56:58 AM

7

Being a Parent of a Child with Complex Needs – What Support Works Dawn Handley

Key Points Decisions made by professionals in the best interests of the child can have far reaching effects on the quality of life of the child and family Procedures are not straightforward to obtain specialist equipment, so parents may have to work around systems and processes to obtain the service they need Professionals can disempower parents through not acknowledging their expertise in being a carer for their child

Introduction This chapter was originally intended to be written by a professional working with families of children with complex needs, to give an insight into the support needs of children and families. The remit was to discuss negotiation of care with professionals, to highlight what assistance was beneficial, and include issues related to equipment needs, financial support, and ongoing day to day management of a child with complex needs. However, in the current climate of negotiating care with expert parents, and including user perspectives in service planning and delivery, who would be in a better position to discuss Caring for Children with Complex Needs in the Community © 2008 Blackwell Publishing. ISBN: 978-1-405-15177-1



113

1/21/2008 9:57:20 AM


these issues than a parent of a child with complex needs? I am grateful to the parent who has written this chapter for her clarity and insight, which gives a realistic perspective on the support needs of families. I have added this introduction, the key points and summary; otherwise the content remains the views of the parent. A pseudonym has been used for the child (Editor).

Being a parent I have been asked to write this chapter because I have a child with complex needs. I appreciate that there are children with more debilitating conditions than my son, but I hope to give an insight into life with a child who has complex needs. My name is D and I am a nurse, which is important as I feel that it impacts on what people expect of me, from both professionals and family; hopefully this will become clearer as I go on. My son Leo, is 12 years old; he has spina bifida which is a congenital limited defect in the spinal column characterised by the absence of vertebral arches through which the spinal membranes and spinal cord may protrude (Chamley et al., 2005, p. 112). He also has hydrocephalus, which is an abnormal increase in the amount of cerebrospinal fluid within the cranial cavity that is accompanied by expansion of the cerebral ventricles, enlargement of the skull especially the forehead, and atrophy of the brain (Chamley et al., 2005, p. 103). There are different types of spina bifida; Leo has a myelomeningocele, which is a congenital defect in which the neural arches fail to close, so exposing the content of the spinal canal. It usually occurs in the lumbar sacral region of the spine, which is the most severe form. Leo’s lesion is at L5 S1 (lumbar vertebrae 5, sacral vertebrae 1), which means there is nerve damage or lack of nervous function below this level. He has no bowel or bladder control, and no sensation from the knees down, causing problems with walking and potential pressure sores at his extremities. Leo is a determined, self-assured young man, who is currently very well and has no major problems at the moment, although he is waiting for a couple of surgical procedures which I will discuss later. His level of mobility is slowly decreasing; he can mobilise independently but the distance he can walk without having to rest is getting shorter, resulting in the use of a wheelchair at times. He is incontinent of faeces as his anal sphincter does not function, and also incontinent of urine as the sphincter at the bottom of his bladder does not work so urine constantly leaks out; this means he has to wear incontinence pads.


1/21/2008 9:57:20 AM

Being a Parent of a Child with Complex Needs 115

I suppose in our own way we have split Leo into two people; everyday Leo and medical Leo. His Dad is very good with everyday Leo but not so good with medical Leo. With everyday Leo, I am just Mum and do all the usual cooking, cleaning and tidying up after him, as any mum would do. With medical Leo, I tend to try and suppress Mum and become more of a nurse, looking at things from a medical perspective weighing up the risks and then consulting the mum side. I suppose that is how I manage to cope with the different scenarios. Even Leo, I feel, sees himself as two people; everyday Leo is there all of the time and he tends to switch the medical Leo off. He does listen to snippets at appointments but tends to send the information to the dark recesses of his memory to be dragged back when absolutely necessary; sometimes they are that far hidden, they get forgotten. This seems to be happening more and more often and it is hard to work out if Leo is being a typical 12-year-old with limited attention to uninteresting facts, or whether the hydrocephalus is having more of an impact on his memory function; or it could be that Leo is playing us all? That may sound a little brutal but he has learnt over the years to manipulate people, when it suits, to his way of thinking. He is very good at getting people to run around and fetch and carry for him. My pregnancy was very straightforward; no problems or complications. When I went into labour, my husband took me to the hospital and the labour progressed normally for the first 3–4 hours, but then Leo started to show signs of foetal distress, resulting in a debate over the need for a caesarean section; however Leo had other ideas and arrived unassisted. The midwife showed the baby to me, and then took him to be cleaned up. The paediatric registrar came to do the birth check; in hindsight I am not sure if this was prompted by the midwife, because I do not remember the doctor coming whilst I was still on delivery suite with my other children, but no one said anything at this time. After the registrar did his check he told me that there was a ‘cyst’ on Leo’s back and that they would like a consultant to have a look. I was not unduly worried at this time, as a cyst did not sound like too much of a problem and could easily be resolved by antibiotics or at worst minor surgery. When the consultant arrived he examined Leo and told me that Leo had spina bifida, and that he would need surgery to close the lesion on his back. He told me that we would be transferred to a specialist hospital as they did not have any paediatric surgeons locally. He probably told me a lot more than that but that is all I remember. I do remember ringing family members to tell them, but I cannot remember what I said, nor if I made any sense. Later that evening we were transferred to the neonatal unit at the specialist hospital and arrangements were


1/21/2008 9:57:21 AM


made for me to stay on the postnatal ward as the rooms on the unit were all full. The postnatal ward was on another level and round the other side of the neonatal ward, which was very uncomfortable to walk to, having recently given birth. On the unit Leo was placed in an incubator, and was undressed for the nurses to place a protective dressing around the lesion on his back. This was the first time I had actually seen what everyone was talking about. It looked quite large on his little back, and was hard to describe; it appeared to be a red/purple mark with a fluid filled sac in the middle. We were informed that Leo would be taken to theatre the next morning to have the area closed, as it needed to be done as soon as possible to reduce the risk of meningitis. I cannot remember if anyone actually sat down with us and explained that Leo had got spina bifida, and this is what you can expect. I am aware it is not easy to give a list of definitive expectations as the condition is so variable depending on where each lesion is on the back and what form of spina bifida it is. I had heard of spina bifida because my best friend’s mother had it, although I did not know the details of her condition. I knew she lived a reasonably normal life; she was married and had two children so how bad could it be! The next morning Leo went to theatre and I think I cried until he was in recovery and I could touch and hold him again. It has left him with a 6-inch scar on his lower back with a large port wine skin discoloration around it. He stayed on the neonatal unit and had various investigations; scans and things – some I think were routine because he was on the unit and some I presume were related to the spina bifida. I am sure they were explained to me, but much of that time is quite a blur. He had daily head circumference measurements to detect the development of hydrocephalus which they told me was a possibility. A month later it was decided that they needed to operate and insert a shunt to relieve the building pressure on his head as he was developing hydrocephalus. Another fairly traumatic time emotionally; surgery on the brain is not the easiest of procedures especially on such a tiny brain. A ventriculoperitoneal shunt was inserted to drain the excess fluid from his brain into his stomach, to relieve the pressure on his brain. Initially his shunt worked really well but at his hospital review 6 weeks later, the consultant thought that there was a problem with his shunt and we were admitted for a revision. The tube had become attached to his brain and blocked the flow; luckily he did not need a change and he has still got his original shunt in situ. It was a little unnerving when the consultant noticed the need for a revision as I had not noticed anything at all. I had been told of the symptoms to look for,


1/21/2008 9:57:21 AM


but as he had not shown any of these it worried me that I may have missed something or that I would not be able to notice them if they did occur. In his first year Leo was admitted to hospital both locally and at the specialist hospital. He had numerous urine infections and it was decided that he needed a circumcision to help reduce the risk of infection; however this did not help as he continued to have infections postoperatively. It was decided to try to perform intermittent catheterisation to see if this helped, so I was shown how to catheterise Leo every 4 hours, which was quite time consuming. The infections persisted and he eventually ended up on one of the paediatric wards at the specialist hospital with an indwelling catheter. I am not quite sure how old he was at this stage but I think he was over a year. After maternity leave I did not go back to work because of hospital appointments and Leo’s care. Financially this was quite difficult and eventually I had to start bank shifts on nights to help make ends meet. It was strange because some nights when I worked on the paediatric ward Leo would be an inpatient. So I would spend my breaks with him; it was a little strange but also reassuring as I knew he was nearby so if anything happened I would be close at hand. We have been lucky as Leo has not really required much surgical intervention but when he has, they have been major procedures, usually to improve his quality of life rather than medical emergencies. His first major surgery was his caecostomy; this involves a gastrostomy button being inserted into a stoma created by his caecum. Through this an enema and saline washout is passed to empty the bowel. We had tried various methods to empty Leo’s bowel but to no avail; he is unable to retain anything in his rectum because his anal sphincter does not function. So when he was 6 or 7 years old it was decided he was ready to have the procedure. The surgeon had to be sure that Leo was ready for the surgery as it would entail a lot of co-operation from him, in carrying out the after care. The bowel nurse specialist became involved and showed Leo the type of button that would be used and explained about the washouts. After our conversations she would liaise with the surgeon and they decided that Leo was ready although he was young for the procedure. I had no apprehensions: Leo was very good at adapting to situations; I knew it would be very time consuming but the benefits of him not having any ‘accidents’, and having some degree of control outweighed the disadvantages. The surgery took a long time to perform – I think he was in theatre for the majority of the morning. The worst part of looking after Leo is going to the operating theatre; it is the worst feeling in the world. It is when you realise how much responsibility


1/21/2008 9:57:21 AM


you hold; you have put the life of your child in the hands of strangers, and you have made the decision. The surgery went very well and Leo made a full recovery; he did have a couple of days when he was unwell and seemed to be in a lot of pain, but this resolved with a change in analgesia. The button is working well and his consultant is very happy as we only use it 2–3 times a week, whereas many children need to use it every day or alternate days. It means that we do not have accidents or faecal soiling; he stays completely clean between enemas. It is much better for him as he does not have to explain himself if he does have an accident and avoids the embarrassment it causes. Leo is now totally independent and can administer the enema and saline flush himself. He has had surgery on both his ankles, at the same time. The Surgeon decided that by releasing the Achilles tendons, it would give his feet more range of movement and help with splints and support for walking. This was very straightforward but was a nightmare when we got home, as initially he was not allowed to walk on the postoperative bilateral below-knee casts, which meant he had to be carried everywhere; it is not easy carrying an 8-year-old up and down stairs!!! Luckily he was small for his age. Releasing the tendons gave temporary relief but his left foot continued to have problems with sores and severe rotation (his left foot has always been the weaker). His orthopaedic surgeon decided that he should perform an oestotomy, to break the ankle and reset it in a better position. So after surgery he was non-weight bearing again, which meant we had to contact the school as he would have to be in his wheelchair for the majority of the day. The wound became infected so the healing process took longer, resulting in more time in the wheelchair. Initially there looked to be an improvement with the foot position but now as he is getting heavier his foot is starting to rotate again. His consultant is happy with things as they stand and does not want to see him for another 2 years unless we have a problem, when we can ring for advice. After surgery Leo was provided with some lower limb splints to try to keep his feet in a more natural position. Having surgery at the specialist hospital caused a problem in getting his splints. Apparently the local hospital bought surgery from the specialist hospital as a ‘package deal’, which includes any orthosis (splints) required. This is fine at first but travelling to another town when there is a problem can be very time consuming. I asked if it would be possible to start attending the clinics locally so Leo’s community paediatrician wrote a prescription for him. We were then told that we could not have them because he had surgery at a specialist hospital, and was still under the care of the specialist, even


1/21/2008 9:57:21 AM


though we had not seen him for 18 months, and had no further appointments. After a lot of discussion the only way we could get splints was if Leo’s general practitioner ordered them, so I had to approach the general practitioner who wrote the prescription and we now attend the local clinic. The problem with various agencies paying for different services resulted in us trying to find a simple way round the system to get a service closer to home. Sometimes the difficulties in obtaining simple changes can be very frustrating and time consuming for families who have frequent contact with health services. Leo’s hydrocephalus has caused very few problems; when he was born his shunt and later review was carried out by a general surgeon. I am not sure of the reason for this, but we attended appointments regularly with the general surgeon. I cannot remember how it came about but we were eventually referred to a paediatric neurosurgeon; he arranged annual magnetic resonance imaging (MRI) scans and put Leo under regular review. About 4 years ago Leo started to get headaches. He is quite tolerant of pain so when he does complain it usually means the pain is quite severe. I think at the time, the headache was there constantly but he would only complain if it became worse. The pain is a specific pain in the nape of his neck and he goes pale; he does not take much medication, so his way to get relief is to go to sleep. I contacted his neurosurgeon and he arranged for Leo to have an MRI scan; there were no changes but he suggested observing Leo, and he would see Leo for review sooner than planned. The severe headaches persisted once or twice a week usually resulting in him being sent home from school with the underlying pain which remained constant, but we were continually told that there were no problems. Then at one routine appointment 2 years ago following his MRI scan the consultant told me that Leo had developed a cyst on his spinal cord around the mid thoracic area, a syrinx (a cyst on his spinal column); this needed to be monitored as an increase in size could lead to damage to the fine motor movements of his upper arms. He also informed me that Leo now had a Chiari’s 2 malformation (a protrusion of cerebellum into the spinal column); apparently both are not uncommon in people with hydrocephalus. He said that Leo needed to be admitted to the ward soon to have some further tests as there was a possibility that Leo required surgery. The surgery would mean removing a piece of bone from the skull at the point where the spinal column enters the brain to allow the brain to expand without causing friction on the bone, which they felt were the cause of Leo’s headaches. Leo was admitted a week or so later for investigations; he had to have intercranial pressure (ICP) monitoring which required a probe to be surgically inserted into his


1/21/2008 9:57:21 AM


brain for 24 hours to measure the pressure. He was in hospital for 2–3 days, but it was all very straightforward; the measurements were within normal limits although he did not have any headaches during the monitoring period. This was the hardest time to come to grips with what was happening for me; all his previous surgeries had been planned months, sometimes years in advance. This was different – it was given a degree of urgency, a necessity rather than the usual more cosmetic procedures he had previously. It made me afraid there were so many potential worries and hazards that I had not had time to get my head around. Maybe it was because it was his brain that was involved, I am not sure, but I could not seem to engage the nurse part of me; I could not be rational about it. I suppose for the first time I panicked; I did not feel in control, which was a coping strategy for me. When things are planned well in advance you have time to ask questions and understand the procedure, to foresee a timetable of events; this was different; it was happening too quickly. When we were seen at a follow-up appointment, Leo’s condition was minimised; his condition was described as fine, and the approach was that there was no need to carry out any treatment. The doctors made me feel like I had over-reacted to what they had told me and that I had not listened to what they were talking about. I felt that they thought I was confused about the seriousness of Leo’s condition and that they had never suggested he could become worse. If there was no problem then why mention it in the first place and arrange for ICP monitoring? I actually felt really uncomfortable and rather stupid after this appointment. I have always got on really well with all Leo’s consultants and have never had any disagreements; I have always felt well supported and that my opinion was valued. After this appointment I felt like I was the worst mother in the world; I felt like they thought I was neurotic, that I wanted Leo to have surgery for the sake of it, when actually I was worried and felt that if something was wrong with Leo then treatment should be carried out while he is young enough to recover well. Leo has good fine motor skills at the moment, which is slight compensation for his reduced gross motor function; what they were saying was that they should wait until Leo becomes symptomatic and has problems with his grip, or hand co-ordination. Why should he have to lose more control before they do anything? All this did have some impact on Leo as every time we had an appointment after this he would ask if he was having the operation on his head. This procedure seemed to worry him, but I cannot give him any reassurances, only that it will not be done yet.


1/21/2008 9:57:21 AM


Apart from his neurosurgeon, I have found all Leo’s consultants very helpful and supportive. If we do have any problems then I can contact the appropriate consultant for advice. If the problem is related to his condition then I tend not to contact the general practitioner, as they usually are not sure and contact a consultant anyway. If Leo is unwell than I have a ‘direct access card’ for the local paediatric wards. This enables me to ring the ward direct and speak to someone there and they will arrange for him to be seen by a doctor, rather than having to go through the Accident and Emergency department. I do not tend to use local services as their resources are limited and they would probably refer on to the appropriate specialist. I have used the local paediatric wards on a few occasions especially when he was young; the care from the staff was very good. However when Leo is in hospital he tends to lose some of his independence and allows nursing staff to do things for him that he is quite capable of doing. Maybe it is his way of having a break from himself and letting someone else look after him, or it maybe that he knows he can get away with it, so he does. I have only ever had one problem with the local hospital. I rang the ward on a Sunday evening because one of his feet had become swollen and inflamed. I explained this to the nurse who answered the phone; I explained that he had a direct access card and that I was concerned about his foot; she asked what Leo’s condition was. She then told me that Leo could not be seen as the problem was not related to his condition. I explained that the problem had developed from an ulcer on his foot caused by his splints. She still was not convinced and said that they could not see Leo. After a long ‘discussion’ she relented and advised me to come up to the ward, Leo was seen by a paediatric registrar and was subsequently admitted for a 5-day course of intravenous antibiotics. It is sometimes not straightforward to get the care Leo requires, even when there are systems in place like the direct access card, due to individual interpretation by staff, where I have to negotiate strongly on behalf of Leo and insist on care. At specialist level I have never had a problem; whenever I have rung and explained the problem, the nurse has passed me on to a doctor and they would either give advice over the phone, or arrange to see him on the ward. The staff have always been very supportive; they are very good at just giving advice over the phone. It can sometimes be a disadvantage when people know that I am a nurse as they leave some of his care for me to do when I visit. I do not mind doing the basic care as any mother would do, but anything above that I do not feel I should do. I find that Leo is more co-operative for other people than he is for me


1/21/2008 9:57:21 AM


and can overreact to things if I am present. It can work the other way sometimes when you see a procedure not being done very well and you want to jump in and take over. Leo has always coped well with hospital and we have never had any problems but now as he is getting older staff ask Leo his opinion, which is not always a good thing in my view. He has started to become difficult when it comes to needles and anaesthetics. When Leo was little and he needed a blood sample or cannulation the doctors used his feet because he had no sensation so they could do it straight away and not have to wait for a topical anaesthetic to work. This has always continued because it has seemed the easier and less painful option. Unfortunately now he is getting older it is becoming impossible to use his feet because the veins are too small. The last time he had surgery we had a little difficulty with cannulation because Leo struggled as he did not want it doing, but with a firm hold and persuasion it was achieved. When the anaesthetist came to see Leo she discussed the anaesthetic with Leo and gave him the choice of how he wanted to be put to sleep. He chose to have the gas because he does not like the sensation of the anaesthetic travelling up his arm. When we got into the anaesthetic room and they started to administer the anaesthetic he decided he did not like the smell. He struggled with the mask so she decided to use his cannula and gave him the anaesthetic this way; this meant he had to be held a little, but he was asleep within seconds. Unfortunately Leo can be a worrier and he has started to get himself worked up about procedures. So when operations are mentioned he starts to become anxious and his brain starts working overtime, although he soon forgets this when we get home. One surgery he was due to have was discussed for a long time; this was surgery to reconstruct his bladder. This would involve implanting part of his bowel into his bladder to increase bladder capacity; also implanting an artificial sphincter at his bladder neck to prevent leakage. He would have a small stoma created on his abdomen to allow a catheter to pass into his bladder to empty it four-hourly. This surgery has been delayed for a long time because the artificial sphincter that is used does not come in paediatric sizes, so we had to wait until he was big enough to cope with an adult size. When we went for his appointment with the urologist, Leo told him that he did not want the operation. I tried to explain that he was worried about needles and anaesthetics, not the actual operation. The consultant asked the nurse specialist to see Leo and explain the operation in more detail to him. We visited the nurse and he talked about the operation and showed him a couple of videos. It was decided


1/21/2008 9:57:21 AM


to do the surgery in the summer holidays so he did not miss too much time off school. He was admitted to the ward a couple of days before the procedure to prepare the bowel by giving Leo medication to empty the colon, and a restricted diet. I explained to them that if they gave him medication, he would be faecally incontinent which I did not feel was fair to Leo. I explained that he had regular bowel washouts and that we could do them for the days running up to the surgery; this was agreed. Whilst on the ward Leo was enjoying the attention and playing on computer games all day, until he had to be cannulated. He started to become anxious and not want it; his dad took him in with the doctor and after a few minutes he returned with a cannula in situ. The anaesthetist came to see him the afternoon before surgery; it was the same person that did his last surgery and after reading her notes she remembered what difficulties there were. Again Leo said he wanted the gas but she recommended the anaesthetic intravenously; Leo was a little upset by this but I did not have any concerns; it is much quicker this way and does not give him time to get all worked up. Unfortunately not long after this the consultant came to see us to tell us that the artificial sphincter had not arrived and would not be here in time for the surgery the next morning. The operation was postponed until they had the part. So the cannula was removed and we were sent home to wait for a phone call hopefully the next day to let us know what was happening. The hospital rang the next day to say that the part was on its way and could we come back in that night with a view to the surgery being carried out the next day. Another anaesthetist came to see Leo and again he said he wanted gas; she said it was up to him and went along with his wishes. I was a little dubious but he was 11 now and had to take some responsibility for what was happening to him. So I left that evening to return the next morning ready to take him to theatre. When I arrived he was more concerned with being hungry and not being able to have anything to drink. He got into his gown and was fine on the way to theatre. When we got into the anaesthetic room he began to start to get upset; they put the mask towards his face but he would not let it get too close as he did not like the smell of the gas. They then discussed various options to try and give him the anaesthetic, but the more choice and time they gave him, the more anxious he got. The anaesthetist then mentioned putting in a cannula and he started to get upset and extremely anxious. I tried to get him to deep breathe to take his mind off it, but there were too many people in the room for Leo to focus on my voice. I tried to hold his hands so that they could get the mask


1/21/2008 9:57:21 AM


nearer to his face but the anaesthetist told me not to hold him down. It was decided after half an hour of trying to give the anaesthetic that they would send him back up to the ward to have some pre-medication to calm him down. We arrived on the ward and the nurse brought in the medicine; it was in syrup form. Leo does not like syrup so we asked if they had tablets and were told that it was a children’s ward so they did not have tablets. I tried to use a syringe and give it to him but he spat it back at me; we tried various methods to try and get it down him but he was so worked up that nothing seemed to placate him. There were so many people involved in calming him down that I think it just made him worse. By 10 am he still had not had the medicine and the consultant decided that he could not wait any longer as it was such a long procedure he would be working into the night if they delayed any longer. So the surgery was cancelled as the consultant felt that Leo needed counselling to help him prepare for the surgery and accept the procedure. This sounds like a lot of fuss; I feel that if Leo had been treated more firmly, the procedure could have been over and done with. I tried to be firm with him and gain control of the situation but there were so many people in the room trying to be nice to him and talk sweetly to encourage him that I seemed to be in the wrong. Being encouraging was not the right thing to do; it just made him react even more and become more anxious. I have explained to the doctors on numerous occasions it is not the operation that he has a problem with, it is the anaesthetic and because he cannot get past the anaesthetic in his head then he would rather do without. He wants the benefits of the surgery but he does not like needles and he does not like the feeling of the anaesthetic going up his arm, and to be honest I do not blame him. Leo is currently having hypnotherapy to try to help him with his phobias with a view to going ahead with surgery sometime this year. I feel I have been very lucky with Leo; everything seems to have gone fairly smoothly until the last admission. However Leo seems a little more relaxed thinking of more surgery but the test will be when he is admitted again. We are hoping to put together more of a plan this time for his admission so that Leo is aware of what is happening and what will help him through it a little better. The only problem we have now is actually getting appointments. They have rearranged the appointment system at the specialist hospital and it seems really difficult to get regular review appointments. For example, a 6-month review could be a lot longer; we are still waiting for a 6-month review from his neurosurgeon and it has been 10 months since we have seen him. There are no urgent problems but it is irritating to have to remember to check if


1/21/2008 9:57:22 AM


appointments have been arranged, and when they are sent out there is very little notice; the appointments are usually within a week or two. So far I have only discussed how Leo and I interact but as I have mentioned there are other members of the family. His dad is very good with everyday Leo but when it comes to hospitals, Dad has never been very good, not just with Leo but with himself and all the children. So when it comes to talking about the details of surgery and what it entails he does not want to know, he just wants to know that it will help Leo and improve his quality of life. It can be hard sometimes because it helps to talk medical treatment through with someone, so I can rationalise things out in my own head, but his dad is not the best sounding board for this. I have very good friends who will let me talk forever and just listen, I also contact the field worker for the charity ASBAH (Association for Spina Bifida and Hydrocephalus), who has always been extremely supportive, and is always on the end of a phone. Leo’s older brother Jon resents Leo quite a bit, as it is difficult not to make Leo the centre of attention, because Leo had lots of appointments with specialists and varying hospital visits. We have tried very hard not to make our lives revolve around Leo and limit the time we spend on Leo but sometimes it is unavoidable. At primary school he was always Leo’s older brother, so we made a conscious decision not to send them to the same secondary schools so that they develop their own identities and circle of friends. If Leo needed him he would be there for him but I suppose it is the same with all brothers; they rub each other the wrong way. For his younger sisters they are still quite young and accept Leo for who he is. They do not question his abilities and do not treat him any differently. They know he is different but do not see it as a problem; he is just their annoying brother. Benefits were never something I thought about when Leo was born. When we were admitted for his review of his shunt a social worker came to see me on the ward. I do not know who or how this was instigated but she came and went through the Disability Living Allowance (DLA) forms and sent them off for me. I probably would still be struggling with them now if she had not helped us. Initially it was just nice to have that little extra financial help when I was not working but it has become invaluable, now that we are part of the Mobility Scheme. We use part of his DLA to fund a car, which may be leased, or bought through the scheme, which will adapt cars if necessary, and we are entitled to free car tax which is also a great help. Unfortunately at the moment you cannot start on the Mobility Scheme until the child is 5 years old; this is because all children under that age are deemed to have restricted mobility. It would have been invaluable when he was a baby to have some


1/21/2008 9:57:22 AM


reliable transport, not the unreliable old car that we had. I had to rely on lifts to hospital appointments from his grandfather until I learned to drive. Because the DLA claim was for a child it is not an indefinite award; it is reviewed on a 5-yearly basis, which at first was not a problem. However it is difficult filling in the forms as the questions are very vague and repetitive, but it is important to remember what you have put in the previous claims as any differences are scrutinised and may affect your claim. We came into difficulties when we decided to lease a car through the Mobility Scheme; to apply you need to have at least 3 years left on your claim. When we first applied it was straightforward but when the 3 years were up we did not have enough of the claim left for a new car so we had to request a review. I wrote and explained the situation and asked if we could have an extension to the award so we could get a car. They wrote back and said that they would not extend the award because there was a chance that Leo may recover! I was distraught, I wrote to them with supporting letters and explained that Leo’s condition was lifelong and that it was highly unlikely that he would have a dramatic nerve regeneration and be ‘normal again. They have now given us the award until his 16th birthday; after this it will be reviewed again and it will hopefully be made a lifetime award as he will be classed as an adult. Leo is looking forward to his 16th birthday as he will be able to start driving lessons a year earlier than everyone else, due to being registered disabled. The Blue Disability Parking Badge has been very useful; it allows you to park in more accessible places, especially for hospital parking which can be difficult at times. Unfortunately the Blue Badge is not available until the child is 3 years of age, again because all children below this age normally have reduced mobility whether they have a chronic condition or not. I think this is unhelpful for parents of children with severe physical disabilities under the age of 3 years as they may experience more difficulties due to equipment, or being unable to manoeuvre an immobile child. A charity that we have found invaluable is the Joseph Rowntree Trust Family Fund; they have helped us out enormously; we received funding to pay for my driving lessons with some help towards family holidays. They are open to all suggestions and if they feel that the request is valid then they will assist with funding. There are other benefits available to people but a lot are means tested and because we are both working we are not entitled to anything. Leo started nursery at a very early age thanks to his community paediatrician at the time. There was a small specialist nursery near to where we lived that only looked after children with disabilities and was attached to a mainstream nursery. So when Leo was 8 months old he


1/21/2008 9:57:22 AM


started a couple of mornings a week. The Consultant had also arranged for his older brother to start nursery as soon as he turned 3, which was useful as it gave me a couple of mornings free to gather myself and get all the jobs done I could not do when I had the boys. When Leo was 3 years old it was decided that he would go to a special school nursery. It was a lovely place and they had numerous links with physiotherapy and occupational therapy, who would see Leo in school so it would save time on appointments. After a year at this school it was felt that Leo was ‘too good’ for them and that he would be better off in a mainstream nursery, and he has been in mainstream every year. At his primary school a Statement of Educational Needs was carried out, which sets out what Leo’s problems are, and what the school has to do to help with the problem. This statement is reviewed on an annual basis with school staff, myself, Leo, and other relevant professionals, so the physiotherapist may come or his continence nurse, and sometimes the educational advisor from ASBAH will come. It is a good time for everyone to get together and review Leo’s progress and see if further input is required. When he was in the final year of primary school we had to start thinking about which secondary school would be suitable for him. There are a couple of newly built schools which have been built to accommodate the Disability Act guidelines but they are not near to home, which was not a problem from an educational point of view, but Leo wanted to go to one of the local schools if at all possible. To help check out the suitability of local schools, someone from the Education Liaison for Special Needs came with me. We visited the school his older brother goes to, which is an old school with narrow staircases, so was not suitable for Leo. The other local school is an old school but has a new building extended that has already had children with wheelchairs, so it seemed the most appropriate choice. He started there in September and seems to be settling well; I think he has found it difficult transferring from primary to secondary because he is not as protected as he was at primary school. He seems to be trying to find his boundaries, using his condition to his advantage if he can get away with it. It is early days yet but I am keeping an eye on things see how they progress. In summary, having a child with complex needs has presented many challenges, some of which have been easier to manage than others. The majority of services and professionals we have dealt with have been helpful and caring; dealing with them all as a parent has developed my skills as a negotiator, communicator and advocate for Leo. The support we have been given has resulted in a better quality of life for Leo and for us as a family.


1/21/2008 9:57:22 AM


Summary Parents are not always acknowledged as the best advocates for their child despite knowing how they react and cope with traumatic events Specialist support in school is beneficial as it minimises the need for travel to specialist appointments, therefore minimising disruption to the family Financial support from the DLA, Mobility Scheme, and charitable organisations are invaluable for helping parents manage and cope with caring for children with complex needs

Reference Chamley, C., Carson, P., Randall, D. & Sandwell, M. (2005) Developmental Anatomy and Physiology of Children. Elsevier Churchill Livingstone, Edinburgh.


1/21/2008 9:57:22 AM

8

Respite Care or Short Breaks for Families of Children with Complex Needs Margaret Hickie

Key Points Lengthening life expectancy of children with complex health needs means that families are providing long term care for many years Parental and child expertise in the care of their child develops to the extent that it equals and often improves on that of qualified professionals The strain on families who are providing most of the care includes isolation, lack of sleep, stress and relationship difficulties

Introduction By using the story of a child with spinal muscular atrophy (SMA) and her family, this chapter will discuss the need for respite care, or short breaks for families of children with complex needs. The groups of children in need of respite and the varying types of respite available will be discussed. Quality markers for respite care will be suggested from the evidence and the author’s experience.

Children who have complex needs The National Service Framework (NSF) for children requires the inclusion of children with complex needs in all aspects of service (Department Caring for Children with Complex Needs in the Community © 2008 Blackwell Publishing. ISBN: 978-1-405-15177-1



129

1/21/2008 9:57:36 AM


of Health (DH), 2004, p. 4). However there is no definition of what constitutes complex needs as it includes children with complex needs as part of the general term ‘disabled children’, who may not be ill, but may have multiple disabilities. Children who suffer from conditions such as epilepsy, cerebral palsy and chronic heart or lung problems are included, along with children who are technology dependent. Generally their health is prone to sudden change and they require close observation (Miller, 2002). The term complex needs also covers life threatening conditions where premature death is possible but the child may have normal periods; progressive conditions with ongoing treatment and no anticipated cure; and neurological disability causing weakness and resulting in an unpredictable nature of the condition (Association for Children with Life-threatening or Terminal Conditions and their Families (ACT), 2003). Miranda is a child who has an incurable progressive disorder in which premature death is likely; she requires ongoing treatment and has no prospect of a cure. She is also dependent on technology for quality of life. Her story has been told to me by her mother with permission to share it; however the family names are changed for privacy.

Miranda’s story Miranda is a happy 10-year-old child with severe SMA. This is an inherited neuromuscular disease of childhood in which there is deterioration of the anterior horn cells of the spinal cord resulting in muscular weakness (Carter & Dearmun, 1995; Contact a Family Directory, 2006). It is characterised by degeneration of the lower motor neurones, associated with muscle paralysis and atrophy. This eventually leads to pulmonary complications and early death in those most severely affected (Liben et al., 2006). Miranda has type 2 SMA in which symptoms develop in the first 6–18 months. Children in this category are sometimes able to sit without support at first but cannot walk. Respiratory function is important in determining prognosis, as scoliosis contributes to impaired lung function by impeding respiratory movement and reducing vital lung capacity. Spinal bracing delays progression of the scoliosis but can also contribute to further respiratory impairment (Liben et al., 2006). Miranda is cared for at home by her parents Jane and Mark and has a sister Jennifer. Her diagnosis was made when she was 12 months old after having failed her development assessment by the health visitor at 8 months of age. The parents were told that Miranda could only expect


1/21/2008 9:57:37 AM

Respite Care or Short Breaks for Families 131

to live until about the age of 2 or 3, and that she should be taken home so that they could enjoy her life. Miranda did relatively well at home until the age of 3 years when having outlived her predicted life expectancy, she developed pneumonia. She was found to be malnourished and could not swallow properly. Miranda was critically ill in the local paediatric hospital intensive care unit, high dependency unit and a hospital ward for 7 months. During this time Jane spent 3 months staying with Miranda in the hospital, and then returned to work. She was working during the day and spending the rest of the time at the hospital. She got up early, gave Miranda her breakfast, had a shower, went to work, came back to the hospital and carried on caring in the evenings and stayed overnight at the hospital. Eventually Jane gave up work and obtained an occupational pension; as a result her income halved overnight. Jane feels that she had many battles during this time in defence of Miranda’s right to live. Her perception was that professionals felt intubation should be withheld, because Miranda was so ill and had a poor quality of life. Jane disagreed, which led her to find out as much information as possible about Miranda’s condition and prognosis. With the support of some professionals she used the internet to find a sympathetic consultant in America, who represented her interests when Miranda again developed respiratory failure and was rehospitalised. A tracheostomy was recommended, which was refused by the parents with the support of the American consultant. One of Miranda’s intensive care doctors collaborated with the American consultant to establish a new regime to wean her from the ventilator. This proved to be successful and Miranda survived her acute illness. Miranda was fed by gastrostomy tube from 3 years of age. At this time Miranda also had oesophageal reflux, a condition in which food regurgitates back up the oesophagus leading to risks of aspiration of food into the lungs. She developed aspiration pneumonia and further discussions about withdrawal of treatment began. Mum did not agree to withdrawal because earlier that day Miranda had been relatively well and she felt that this was an acute episode to be treated, rather than a progression of the disorder; Miranda was therefore intubated and ventilated again. Miranda also has scoliosis and at the age of 9 years there was the dilemma of whether to treat this; Jane remembers that she fought for treatment and succeeded. Later treatment led to Miranda also using BiPAP night time supportive ventilation, which helped her respiratory function and allowed Miranda to be nursed at home; see Box 8.1.


1/21/2008 9:57:37 AM


Box 8.1

BiPAP supportive ventilation

BiPAP refers to a system of ventilatory support (Bi-level positive airway pressure) which is non-invasive as ventilation is achieved via a mask. The advantage of BiPAP is that there are two levels of pressure delivered by the ventilator in response to breathing flow from the patient (Jaarsma et al., 2001)

Today Miranda uses an electric wheelchair to promote independence, although she has limited independent movements. On a daily basis her parents bath her, apply a brace to her chest and ensure she is comfortable. They feed her via her gastrostomy tube, care for the ventilator at night, and apply suction as needed to remove secretions from her airways and prevent aspiration of secretions into the lungs. They give her oxygen and humidity to help with breathing difficulties and carry out all other care needed. Miranda has a ‘portacath’ cannula line which is accessed under her skin to allow for drugs and fluids to be given when needed. Jane does not carry out this care but leaves it to the nurses. These days Miranda has a terrific sense of fun and enjoys her life to the limits. She attends mainstream school as Jane feels inclusion in mainstream society is important. The headmistress is fully supportive and finds that Miranda is very bright; in the author’s experience most children with SMA have very high intelligence. Professional support to help care for Miranda comes from the local palliative care community team (which supports children with life limiting illness) one night per week, which allows the family to rest. Crossroads (a charitable organisation that provides support to carers) also helps 4 hours a week to get Miranda ready for school, and Miranda also receives respite care at a local hospice but would welcome more. Like all children’s hospices respite is quite limited due to the large numbers of children using them. Miranda and her family have no help from extended family or friends because of the difficult nature of Miranda’s care, apart from one friend who has been trained in this sort of care to sit with Miranda for 5 hours a week, for which they pay. The parents feel that they need all the help they receive as it allows them some limited time to themselves. Mark works full time and Jane has now started working 2 days a week. However despite the positive effects of care from professionals there are the drawbacks; Jane feels that there is a lack of privacy in their home. A new extension has been


1/21/2008 9:57:37 AM


built for Miranda with a separate entrance, which has the advantage of allowing carers to use that entrance in the night thus ensuring some space for the rest of the family. The parents’ bedroom however is next to the extension to allow them to hear Miranda and give care in the night if needed. Therefore, even when the nursing team are present to give the parents a break, they still do not get a good night’s sleep because of the noise of equipment and the need for carers to pass the parents’ room on occasions. There is also a large turnover of staff due to sickness or staff leaving and new staff being trained. This leads to times where Miranda and her parents are not as confident in the care, or times when there is limited care available. All this has had an enormous impact on family life. Jane says that it is very isolating being in this position. For a long time they did not get the chance to socialise and as a result were alone at home. Now that they have more help Jane finds that she no longer has the passion for family holidays because of the high level of nursing care and equipment needed. The parents have very much become experts in Miranda’s care. They sometimes find it hard to leave Miranda with professionals because of past experience and because they want the best for her. Small differences in care between professionals and the family can easily disempower the family leaving them feeling belittled. An example concerns a situation when some medicine was left ready drawn up for the nurse who was coming to care for Miranda when Jane was away on holiday. She was phoned by the nurse who was not allowed to give the medicine because it was not in the package labelled by the pharmacist. Whilst recognising professional requirements she felt belittled and the break itself became stressful. The fact that Mark was available for contact but had not been consulted by the professionals highlights the fact that fathers are not always included in care (DH, 2004). When the family first attended the children’s hospice they used to stay with Miranda and carry out her care. As they became confident in the staff they started to leave her there. This was also because Miranda wanted to be left to enjoy all the facilities and trips out. Miranda sometimes attends the hospice with her sister and sometimes brings a friend. Her parents feel that they would not use a respite centre just so they could have a rest; the most important thing to them is that Miranda and her sister benefit, and have positive experiences. Jane finds it very beneficial that the whole family is supported, and that hospice staff will look after Miranda. She feels the same about care in her own home; if there is a carer coming who Miranda does not feel excited about, Jane will not go out. However the carers do quite a lot with Miranda so that


1/21/2008 9:57:37 AM


she has a good time. She likes to have ‘girlie’ times with them and to have her nails painted and be pampered. She also likes people with whom she can laugh. Despite the parents’ love and affection for Miranda’s sister occasionally they have less time for her; this happens particularly when Miranda is hospitalised. When she was younger it was difficult to know what her understanding was and Jennifer had once asked why her mum was crying as she left the intensive care unit. On being told that it was because the doctors did not feel that Miranda would live she responded ‘don’t worry you have still got me’. Both parents still ensure that Jennifer has as much of a normal life as possible but mum feels that this is obviously tempered with realism. Jennifer knows the difficulties but has her own friends, loves horse riding and is encouraged to do as much as possible socially. Jane and Mark feel that it is important to allow her time out of the difficult situation that Miranda’s care entails.

Impact of continual caring on families There is a general acceptance that many children with complex health needs are surviving longer and this is felt to be because of medical and nursing advances (Olsen & Maslin-Prothero, 2001; Kirk & Glendinning, 2002; Miller, 2002). As a result care at home by families is increasing (Kirk & Glendinning, 2002) to the extent that parents are providing many aspects of complex care as they shoulder the responsibility for the daily care of their children. Many carry out traditionally highly skilled nursing procedures such as tracheostomy care, intravenous feeding, giving medication and even ventilator care. Kirk & Glendinning (2002) have suggested that this has the effect of ‘blurring the boundaries between lay and professional roles’ (p. 625). It has been found that many parents achieve a competence that is at least equal to specialist professionals and exceeds that of professionals with a generic role (Kirk & Glendinning, 2002). It can be argued that life expectancy and quality of life is further increasing because of parental care in conjunction with medical and nursing advances. There are many dilemmas concerning withdrawal of life-prolonging treatment and in contrast to the example of Miranda’s family it has been found that professionals often have difficulty in making the decision to withdraw such treatment (Liben et al., 2006). However, from Jane’s story about how she obtained ventilator care it can be seen that for some families fights for treatment that at one time would not be given sometimes extend life and also improve quality.


1/21/2008 9:57:38 AM


Conflicting relationships between parents and professionals have been identified by Kirk & Glendinning (2002), at times where mutual expertise is unrecognised. In Jane’s situation this need and ability to contradict professionals came about through her feeling that she and her husband ‘needed to empower themselves with knowledge’ to be able to care for Miranda. Whilst empowerment has long been seen as important (Rappaport, 1984; Swanwick, 1995) professionals can unintentionally easily frustrate and disempower families by taking charge of situations or speaking insensitively (Dominica, 1990). Despite this, it needs to be recognised that families are carrying out an increasing amount of care in the home with little help. Following initial training programmes in hospitals, parents’ experience comes from individual experience and intuitive knowledge of being left with the daily care (Kirk & Glendinning, 2002). It is therefore vital that professionals recognise parental expertise (Dominica, 1990) in order to empower and boost self-esteem. Families faced with an unmet need for support have higher than average levels of stress and ill health compared to others (DH, 2004). The causes include sleep disturbance, restricted social activities, marginalisation and isolation. The fears and inabilities of friends or family of being asked to provide care (Beresford, 1994; Miller, 2002) means that, like Miranda’s family, many families have no babysitters or extended family support. Beresford found that 42% of families received no help from family and friends. Sibling stress and isolation is also a result, as families commonly experience exclusion from ordinary child and family activities. In addition behavioural and sleep disorders are key factors in parental stress. Fathers are seen as having a key role in a family with a child with complex needs but the Children’s NSF Standard 8 (DH, 2004) suggests that they are often excluded from certain aspects of the child’s life. Mothers and carers are still providing much of the care, and need support with complex nursing care in the home and the provision of short breaks from caring (DH, 2004). The impact of poverty is recognised (DH, 2004) as many parents cannot receive paid employment due to care giving, lack of child care, and multiple appointments with services. Despite the fact that it has been recommended that families with life threatening conditions should have access to financial advice regarding equipment and benefit entitlements (ACT, 1994), there remain difficulties surrounding access to benefits and all services (DH, 2004).

Need for respite care All the families of children with complex needs would benefit from respite care to alleviate tiredness and give a break from care giving.


1/21/2008 9:57:38 AM


However, the term respite has been criticised because of its implication that the child is a burden on the parents (Miller, 2002). This could be because traditional respite involves leaving the child in the care of someone else while the care giver has a rest. Most parents do not find their child to be a burden, and there are some who feel unable to leave their child, but many would acknowledge the need for a break. Rather than use respite care language, Miller (2002) suggests using the expression ‘short breaks’ to avoid the use of emotive terminology. These breaks do not necessarily mean leaving the child in the care of someone else, as some places offer shared care with the parents. Therefore for the purposes of this chapter respite care or short breaks is taken to mean the shared care of a (child or young person) with (complex needs) either at home or in a residential setting in order to give the family a break from routine care (giving) (adapted from Miller 2002, p. 35). The settings and variety of respite services will now be discussed.

Respite services Shared care with a link family Shared care with a link family involves formal arrangements with another family to look after the child. It is thought to be sometimes preferable for young children and can offer flexibility for families. Prewett (2000) suggests that despite recommendations for respite in the home to be expanded (DH, 1999), there are difficulties in finding and training appropriate carers. This has the effect of making children wait longer for services. Many families or carers who provide this service have had personal or professional experience which makes them more willing to take on this role. Benefits are that a strong relationship is established between the link family and the child requiring respite care, which can also include the child’s own family. The link family is accountable to social services and care is monitored and arranged by social services. Care takes place in the link family’s home so giving a complete break to the child’s family.

In the child’s own home Families find that respite based in the child’s own home is valuable, but can result in a lack of privacy. However the convenience of not


1/21/2008 9:57:38 AM


having to transport equipment cannot be underestimated (Kirk, 1999). The Department of Health (DH, 1998) suggests that one-to-one arrangements with a carer or nurse and a family is ideal, as this promotes more family confidence, but because of the difficulties of maintaining one main carer it is sometimes easier to train a small number of carers who know the child (DH, 1998; Kirk, 2002). These carers do not need to be qualified nurses if they are adequately trained (Kirk & Glendinning, 2002). This type of care can be flexible and is often linked with the need for palliative care within the child’s home, which can include nursing, pain management, symptom control, play and short breaks. Within paediatric palliative care this flexibility has long been seen as essential (Dominica, 1990; ACT, 1994; Hill, 1994). It is vital that children themselves are involved and maintain control of their care (DH, 2004); their wishes and needs may conflict or agree with their families (Goldman et al., 2006), so it is important that skilled staff can balance the needs of both. The provision of home-based care such as those provided by recently funded ‘Big Lottery’ schemes aim to provide additional support at home, which has meant that more multidisciplinary care is provided. Many of these services are shared between agencies resulting in joint working practices, which are seen as beneficial to families. Collaboration has been promoted because of the expectations of the children’s trust arrangements which stem from the Children Act (2004), and the new integrated inspection processes, which concentrate on joint working and partnership arrangements. The Children Act requires children’s services to co-operate with particular partners to improve the well-being of local children and young people (Wheatley, 2006). In some areas home based care involves collaborative arrangements with the voluntary sector. For example, the author has experience of a children’s hospice outreach, and community children’s teams within the local primary care trust, which have started a joint palliative care project. The care provision is for whole families with the inclusion of support for siblings. This means that as well as nursing care, there are specialist play facilities, behavioural programmes and trips out to places the children would not normally experience, which are included. This care can be provided day or night to suit the needs of the child and family. This particular service is available only for children with life limiting and life threatening illness, making it unavailable for all children with complex needs. Therefore the type of referrals received indicates an unmet respite need for many families. Additionally these schemes are funded for 3 years, so there is a risk that some may not continue if providers can not continue funding.


1/21/2008 9:57:38 AM


Respite in the home by qualified nurses for children with life threatening illnesses range from outreach services by well-established centres (voluntary and statutory), voluntary countrywide specialist home respite services (such as Crossroads), respite as part of specialist children’s palliative care services, and respite as part of a children’s community nursing team. These services need to be responsive to individual need and balance pre-booked respite with emergency care. Olsen & MaslinProthero (2001) discovered that families can be alienated at a time of greatest need where support is not so responsive. Voluntary services may take time to become accepted by families but when successful, are used widely (DH, 1998). The type and features of these respite services require flexibility and good knowledge of the family. Flexible services should offer various time spans to suit individual needs, for example, different families benefit from either day care or overnight care, with weekends and holiday times valued most. Regular and crisis respite is important, as various nursing needs may change rapidly so care should be adaptable; an example is that care assistants, nursery nurses and nurses may be required at different times due to skills required to meet the specific needs of the child. Typical characteristics of children receiving home respite care are that children under 5 years appear to prefer home respite (Miller, 2002), and families from ethnic minority groups seem to access the services less. This means that services need to identify individual respite needs for their area. Recruitment of staff can be difficult and finding nurses to work a few hours a day can be particularly problematic as they may not want to work for only a few hours at a time, or in a home environment, which is different from caring in a more formal setting.

Institutional respite care This involves care which is offered in hospital wards, residential care settings or a hospice (Miller, 2002).

Hospital The use of acute hospital beds is thought to be inappropriate for respite care (Miller, 2002), but some parents find this valuable because of the nursing skills required to meet the child’s needs. However, Miller (2002) states that whilst it might meet the needs of parents especially in times


1/21/2008 9:57:38 AM


of emergency, it is questionable whether hospital is appropriate in meeting the development and emotional needs of children. There are also issues of risk to the child from hospital acquired infection, and inappropriate use of beds which are a limited resource required for children with acute medical needs.

Residential care settings Social services have a responsibility to provide residential care settings for children who are looked after by social services, which may involve temporary respite care or more permanent care arrangements. Shared care arrangements may be in place for children with disabilities or complex health needs. Some parents find residential settings to be more reliable than others (Morris, 1998) but Olsen & Maslin-Prothero (2001) found that residential places for children with complex needs are limited due to a lack of appropriately trained carers. It has also been found that children who are dependent on technology are frequently denied access to respite care (Townsley & Robinson, 1999). As a result, a number of purpose built respite centres have been established which offer home from home facilities within the hospital (Brooke et al., 2006), where there are nurses and medical staff with the relevant skills. However parents can be dissatisfied with the knowledge of nurses caring for children with technical care requirements, particularly if they are not qualified nurses. Murphy (2001) suggests there is a preference from purchasers of services to have trained carers rather than qualified nurses for respite care, due to cost implications. However fear of litigation can be an obstacle with care provision in residential care settings, which means that some children cannot access respite care as there is a lack of suitably qualified staff to meet their care requirements. The issue of whether qualified nurses are always needed is difficult because the staffing requirements of the DH (2002, Standard 29, p. 45) do not necessarily require nurses in children’s homes. They do require a minimum of staff to be qualified to NVQ level 3 in caring for children and young people, and state that staff may hold other qualifications that have similar competencies. Carers can be trained to carry out nursing procedures to a high standard for each individual child, but because children with complex needs have multiple needs including nursing, the author would favour the use of a multidisciplinary team (including nurses, nursery nurses, social workers and other therapists).


1/21/2008 9:57:38 AM


Children’s hospices Children’s hospice care has been in existence since 1982 with the opening of Helen House in Oxford. The model of care for hospices is still based on the initial research of Stein et al. (1989), which found that parents wanted quality care and emotional support for the whole family in a homely atmosphere that provided time to talk. This quality of care was characterised by a combination of professional skills, personal care, and familiarity with the child’s illness, and related daily problems. Planned respite care in hospices is also flexible enough to include the whole family. Where a child’s condition has deteriorated beyond the remit or scope of the local respite provision, parents want somewhere offering pre-planned stays that are not cancelled by an acute illness, with an emergency bed available to promote security and reduce isolation. Medical care is mainly aimed at relief of symptoms rather than active intervention, particularly for pain, feeding, toileting and seizures. Most of all, the aim is for the children to enjoy themselves with daily continuation of the child’s own preferred routine (Stein et al., 1989). Hospices provide an individual approach to each child and aim to meet the wishes of families in accordance with the philosophy of care which values the expertise of children and families. Professional care givers do not take over, but offer intervention only when invited by families (Dominica, 1990). Children’s hospices are staffed by a multiprofessional team which includes qualified children’s nurses, nursery nurses, physiotherapists, social workers, play/creative specialists, and draw on other expertise as necessary. There is also medical input, with general practitioners visiting daily and providing an on call system. The medical staff and care teams provide highly skilled and increasingly technical care in a low technical homely environment. However, not all groups of children with complex needs can access hospices, whose eligibility criteria stipulate short life expectancy or life threatening illness. More recently because many hospices seem to have greater numbers of children receiving care, there is more need for families to access other respite in addition to the hospice, which may be limited for children whose needs are complex. It seems that parents remain largely satisfied with care within the hospices. A high quality of service is reported (DH, 1998; Maynard et al., 2005; Brooke et al., 2006). However there may be occasional dissatisfaction with communications between parents and the hospice, and parental uncertainty about fairness in allocation of bookings. Parents may not be aware of alternate respite care to the hospice and can feel disadvantaged if they perceive their needs are not being met.


1/21/2008 9:57:38 AM


Other suggestions for improvements have included the need for en suite bathrooms and more facilities for teenagers. The difficulty which children’s hospices encounter, concerning provision of enough care to meet demand, has led to requests for more allocation of resources and funding to increase the range and amount of children’s hospice care.

Quality markers for respite care/short breaks Wherever a family takes up respite it is shown that good short term breaks can provide a positive experience by enabling children to form friendships, new experiences and supportive relationships with carers (Maynard et al., 2005). These good breaks are associated with reductions in maternal stress and reduction in marriage breakdown. Due to the fact that many children with complex needs attend school, there is recognition that families need flexible breaks which offer choice, especially at weekends and holidays (Miller, 2002). Shared care is acceptable to many families as they do not feel they are giving up their child completely to someone else. Respite is a two way process, as one young person said to the author, ‘I come to get away from my mum’. Respite care which is beneficial to the child has been reported to reduce parental discomfort (Miller, 2002). It is therefore important that respite care should aim to meet the needs of the child as well as the family. The Children Act (1989) emphasises the importance of the provision of extra opportunities for the child with special needs to meet development and social needs (Miller, 2002; Rhodes, 1999). It is the author’s experience that some families who are reluctant to admit the need for a break, have taken up the use of facilities which give their child a new range of opportunities and experiences. The NSF (Standard 8) recognises that many children with complex needs have ongoing health interventions, treatments and nursing care to help with everyday activities (DH, 2004). The Standard requires that they receive high quality family inclusive services, based on need, which ensures children and their families should be able to lead ordinary lives. The required markers of good practice laid down by the NSF require early identification and provision of services which are accessible, child centred and multi-agency co-ordinated from referral to delivery of care. There is also an expectation that ongoing care will be evidence based and delivered by staff that are skilled in diagnosis, assessment and treatment, and that are able to negotiate care with children and their families. As a result of consultation, children have identified their desire for friends of the same age who share similar


1/21/2008 9:57:38 AM


experiences, to do the same things as other children, for example, shopping,cinema going, clubbing, attending youth clubs, sports clubs and out-of-school activities. They want to be safe from bullying, have control of spending money and not face prejudice (Maynard et al., 2005). Kirk & Glendinning (2002), identified the care which parents stated they need as three dimensional involving emotional, practical and information needs. Just ‘being there’ was seen as highly important in promotion of confidence. Community children’s nurses were singled out as particularly valuable. The fact that they have mobile phones helped more than areas where constant messages were left. Someone who would listen and understand the problems was considered valuable. An advocate was needed to be able to support parents’ applications for benefit and other services. When setting up and improving services, children with disabilities and parents should be included to ensure responsiveness to need and family confidence (Wheatley, 2006; Carlin, 2005). All children regardless of age or condition can communicate and should be assisted to participate in assessing and planning care; if this is not possible then at a minimum, they should be able to show how they can communicate happiness or sadness. Communication passports have been used to assist children with communication difficulties, which should include information about how a child communicates, and how to interpret this communication (Carlin, 2005). Good communication is important in building a partnership and should be at the heart of any inclusion policy for children with complex needs. Partnership can be achieved by written information for parents which is in plain clear language. Policies of openness should be promoted which will encourage parents to share information about their children’s health needs. Parents should be invited to attend and participate in meetings, reviews, risk assessments and training relating to their children (Carlin, 2005). It is also important to ensure that children and young people attend and participate in meetings and reviews that discuss their health needs. Their privacy and dignity should be respected at all times. Smart cards may be useful and are held by young people; they include their name and other information which they may wish to discretely disclose to teachers or other people about their condition (Carlin, 2005). In the case of Miranda, short breaks at a children’s hospice offer holistic care to the whole family through negotiation of friends or family that may stay with Miranda, and continuity of her normal care requirements. The benefits to both Miranda and her family are that care is delivered according to their wishes, and results in a positive experience


1/21/2008 9:57:38 AM


for Miranda, not just a break from caring for her parents. A good relationship exists between the hospice staff and Miranda’s family, established through good communication and confidence in the quality of care delivered.

Box 8.2

Summary of quality markers

The family views are central to good quality short breaks. It is important to be flexible and provide care in the way the family wishes. The child’s familiar routine should be followed rather than the routine of the professional (Stein et al., 1989; Dominicia, 1990). If possible parents should be given the choice of staying with the child. The parents should be involved in a partnership, teaching professionals the personal care routine of their child. Respect of family expertise cannot be underestimated (Kirk & Glendinning, 2002). Siblings are important. Sometimes families may choose to have time with the sibling while the child with complex needs receives a break away from home. Alternatively where possible, siblings may be included in the short break. Respite and short breaks work both for the child and the family. Care for the child must be of high quality in accordance with family wishes, but can also offer the opportunity to do things that other, well children, take for granted. The chance to make friends with other children and form new relationships is important (Maynard et al., 2005). Communication is vital and all efforts to communicate with the child should be made. Ensure the parents share information about how to recognise whether their child is happy, sad, in pain or comfortable. Include this in care planning (Carlin, 2005). Communication with the family is just as important. Parents often value someone who will be an advocate in supporting applications for other services. Allow parents and children to participate in meetings, reviews and training relating to their own children (Carlin, 2005). Give choices to the children. Even children with limited communication can make some choices in their lives. Parents can help with telling their likes and dislikes (Carlin, 2005). Liaise and work with other professionals to ensure ongoing care is evidence based and responsive to need (DH, 2004).


1/21/2008 9:57:38 AM


Conclusion Using the example of a particular family this chapter has discussed the need for respite care or short breaks by families who are caring for children with complex needs. The dilemma of using the word respite, with connotations of the child being a burden to families has been highlighted and it is found that the use of the term short breaks is favoured by some. The varying types of respite have been shown along with the disadvantages and advantages; however it still seems that there is not enough respite to meet demand. Using the premise that respite is a two-way process, with the child as well as the family needing breaks and quality time, some quality markers for good respite or short breaks have been suggested. It is vital that the children benefit from the care received in order to improve their experiences but also to ensure families feel comfortable with the care. Parents will not use facilities that their child does not like or where the quality does not match that of parental care.

Acknowledgements I would like to thank Liz Marland for her experiences in setting up a residential respite home and the care team at Francis House children’s hospice for sharing their knowledge. Thanks especially to Sister Aloysius, David Ireland, Kathy Cooper, Dawn Geddes and Geraldine Earley for their help in the literature review and constructive comments on the manuscript. The biggest thanks go to the families who share their experiences and in particular to the family of Miranda for permission to share their story.

References ACT (2003) Definitions for Palliative Care Minimum Datasets. Act Diagnostic Groups. Available at www.act.org.uk Association for Children with Life-threatening or Terminal Conditions and their Families (ACT) (1994) The Act Charter for Children with Life-Threatening Conditions and Their Families. ACT, London. Beresford, B. (1994) Positively Parents. Caring for a Severely Disabled Child. Social Policy Research Unit, York. Brooke, L., Vickers J. & Barber M. (2006) Place of care. In Oxford Textbook of Palliative Care for Children (eds A. Goldman, R. Hain & S. Liben), pp. 557–572. Oxford University Press, Oxford.


1/21/2008 9:57:39 AM


Carlin, J. (2005) Including Me. Managing Complex Health Needs in Schools and Early Years Settings. Council for Disabled Children & Department for Education and Skills, London. Carter, B. & Dearmun, A. (1995) Child Health Care Nursing. Blackwell Science, Oxford. Children Act 1989 (1989) The Stationery Office, London. Available at www.opsi.gov.uk/acts/acts1989/Ukpga_19890041_en_1.htm Children Act 2004 (2004) The Stationery Office, London. Available at www.opsi.gov.uk/acts/acts2004/20040031.htm Contact a Family Directory (2006) Specific Conditions, Rare Disorders and UK Family Support Groups. Available at www.cafamily.org.uk Department of Health (1998) Evaluation of the Pilot Project Programme for Children with Life Threatening Illnesses. NHS Executive, London. Department of Health (1999) The Governments Objectives for Children’s Social Services. Quality Protects – Transforming Children’s Services. The Stationery Office, London. Department of Health (2002) Children’s Homes National Minimum Standards. Children’s Homes Regulations. The Stationery Office, London. Department of Health (2004) Standard 8 – disabled children and young people and those with complex health needs. In National Service Framework for Children, Young People and Maternity Services. DH, London. Dominica, F. (1990) Hospices: A philosophy of care. In: Listen My Child Has a Lot of Living to Do (eds J. Baum, F. Dominica & R. Woodward), pp. 3–5. Oxford University Press, Oxford. Goldman, A., Hain, R. & Liben, S. (2006) Oxford Textbook of Palliative Care for Children. Oxford University Press, Oxford. Hall, S. (1996) An exploration of parental perception of the nature and level of support needed to care for their child with special needs. Journal of Advanced Nursing, 24, 3, 512–521. Hill, L. (1994) The role of the children’s hospice. In: Caring for Dying Children and their Families, (ed. L. Hill), pp. 177–183. Chapman & Hall, London. Jaarsma, A., Knoester, H., van Rooyen, F. & Bos, A. (2001) Biphasic positive airway pressure ventilation (PeV+) in children. Critical Care, 5, 174–177. Kirk, S. (1999) Caring for children with specialised health care needs in the community: The challenges for primary care. Health and Social Care in the Community, 7, 5, 350–357. Kirk, S. & Glendinning, C. (2002) Supporting expert parents. International Journal of Nursing Studies, 39, 625–635. Liben, S., Hain, R. & Goldman, A. (2006) Respiratory symptoms. In: Oxford Textbook of Palliative Care for Children (eds A. Goldman, R. Hain & S. Liben), pp. 438–447. Oxford University Press, Oxford. Maynard, L., Rennie, T., Shirtcliffe, J. & Vickers, D. (2005) Seeking and using families’ views to shape children’s hospice services. International Journal of Palliative Nursing, 11, 12, 624–630. Miller, S. (2002) Respite care for children with complex healthcare needs. Paediatric Nursing, 14, 5, 33–37. Morris, J. (1998) Still Missing? Volume 1: The Experiences of Disabled Children and Young People Living Away from Their Families. Who Cares? Trust, London. Murphy, G. (2001) The technology dependent child at home, Part 2, The need for respite. Paediatric Nursing, 13, 8, 24–28.


1/21/2008 9:57:39 AM


Olsen, R. & Maslin-Prothero, P. (2001) Dilemmas in the provision of own home respite support for parents of young children with complex health care needs: Evidence from an evaluation. Journal of Advanced Nursing 34, 5, 603–610. Prewett, B (2000) Committed to caring: The views of short break carers for children who are hard to place. Cited in: Miller, S. (2002) Respite care for children with complex healthcare needs. Paediatric Nursing, 14, 5, 33–37. Rappaport, J. (1984) Studies in empowerment. Introduction to the issue. In: Prevention in Human Services 3. Studies in Empowerment: Steps Toward Understanding & Action (eds J. Rappaport & R. Hess), pp. 1–8. Haworth Press, New York. Rhodes, A. (1999) Promoting Partnership: Supporting Disabled Children Who Need Invasive Clinical Procedures: a Guide for Barnardo’s Family Support Services. Barnardo’s, London. Stein, A., Forest, G. & Baum, J. (1989) Life threatening illness and hospice care. Archives of Disease in Childhood, 64, 697–702. Swanwick, M. (1995) Power where it belongs. Empowerment in child health. Child Health, 2, 6, 232–236. Townsley, R. & Robinson, C. (1999) What rights disabled children? Home enteral tube feeding in the community. Children and Society, 13, 48–60. Wheatley, H. (2006) Pathways to Success: Good Practice Guide for Children’s Services in the Development of Children’s Services for Disabled Children. Evidence from the Pathfinder Children’s Trusts. Council for Disabled Children, Department for Education and Skills & Department of Health, London.

Useful additional reading Council for Disabled Children (2004) Dignity at risk: A Practical Handbook for Professionals Working with Disabled Children and their Families. CDC, London. Glendinning, C. (1983) Unshared Care Parents and their Disabled Children. Routledge & Kegan Paul, London.

Useful contacts for respite services/sources of advice Association for Children with Life Threatening or Terminal Conditions and Their Families (ACT), 65 St Michael’s Hill, Bristol BS2 8DZ. Website www.act.org.uk Association of Children’s Hospices, 1st floor, Canningford House, 38 Victoria Street, Bristol BS1 6BY; Tel 0177 989 7820; email info@child hospice.org.uk; website www.childhospice.org.uk Contact a Family, 209–211 City Road, London EC1V 1JN; email info@cafamily. org.uk (www.act.org.uk) Mucopolysaccharidoses Society (MPS), 7 Chess Field Park, Little Chalfont, Bucks.


1/21/2008 9:57:39 AM


The CLIC (Cancer and Leukaemia In Childhood) Trust. CLIC UK, 12–13 King Square, Bristol BS2 8JH. The Jennifer Trust for Spinal Muscular Atrophy, Eta House, Birmingham Road, Stratford upon Avon CV37 OAQ; email [email protected]; website www.jtsma.demon.co.uk The Rainbow Trust, Claire House, Bridge Street, Leatherhead, Surrey KT22 8BZ.


1/21/2008 9:57:39 AM

9

Social Service Support for Disabled Children, Children with Complex Needs and Their Families Philip Gilligan and Juliet Taylor

Key Points Influence on social services of the ‘social model of disability’, the concept of ‘inclusion’, and the goal of children being cared for by their parents Importance of counselling and assessment skills for social workers who negotiate care with families that include a child with disabilities or complex care needs Need for flexible and responsive ‘respite’ and ‘shared care’ services that can respond quickly to the changing needs of disabled children, those with complex care needs, and their carers

Introduction Children with complex needs and disabilities often have both health and social care needs, necessitating the involvement of a social worker with the family to provide support and access to various social services that can assist parents to care for their child. This chapter will consider the legislation and policy that guides social service support to this group of children, and use a case example to illustrate specific examples of the type of care that can be provided by social workers. Caring for Children with Complex Needs in the Community © 2008 Blackwell Publishing. ISBN: 978-1-405-15177-1



149

1/21/2008 9:57:53 AM


Legislative and policy context Since the implementation of the Chronically Sick and Disabled Persons Act 1970, local authorities have been required by law and policy guidance to provide a variety of services to disabled children and their families. Relevant legislation and guidance (some of which is listed at the end of this chapter) has increasingly sought to integrate disabled children within their geographical communities, and provide support for parents and carers to allow them to care for their children at home. Practice amongst social workers has been influenced by the ‘social model of disability’ which emphasises the disabling nature of societal responses to individuals with impairments, the resultant barriers they face and the need to overcome these. The social work profession recognises that much ‘disablement’ is in fact created by oppressive social systems rather than by impairments, and emphasises the desirability of ‘inclusion’ rather than ‘segregation’ (see for example, Swain et al., 2004). Forty years ago the situation was very different; many disabled children lived in long stay hospitals, while the remainder lived at home with families who rarely received services from professionals. Read (2000) identifies that ‘Until the 1970s, disabled children and their families were a largely invisible group as far as politicians, policy makers and the general public were concerned.’ (p. 5) She notes that a number of public enquiries into long stay institutions (see for example, Howe Report, 1969) and public concern over thalidomide (Lenz, 2002) brought more attention to disabled children and their families. In addition Read (2000) identifies the 1970 Chronically Sick and Disabled Persons Act as ‘ground breaking legislation’ (p. 6) due to the fact that its implementation was seen by many as the first legislation focused entirely on disabled adults and children. Research in the 1980s (Baldwin, 1985; Glendinning, 1983) highlighted the contribution parents were making to the care of their children, while official policies began gradually to respect parents’ roles and to recognise them as partners with professionals in meeting the needs of children. Unfortunately, this increasing respect and recognition was rarely accompanied by adequate funding and there were frequently insufficient financial resources to support services proposed by legislation. Read (2000) points particularly to the lack of adequate community based support services for carers of disabled children. Policy and legislation in the 1980s and 1990s, and the Children Act 1989, in particular, promoted the view that disabled children should be


1/21/2008 9:57:54 AM

Social Service Support 151

treated as children first and should have the same opportunities as nondisabled children. Unfortunately, these new and very positive legislative and policy developments did not fulfil the aims envisaged for them. The Department of Health (1995a) attributes this to an emphasis on child protection by local authorities, and to a general lack of resources for the growth of family support services. Beresford (1994) researched the experiences of parents of disabled children, seeking to examine the positive aspects of caring for a disabled child, ‘viewing parents as actively managing their situation rather than being passive recipients of an onslaught of stress.’ (p. 1) Her research found that parents would not seek formal help if they believed it was for tasks which they, as parents, would ‘naturally’ undertake. Parents wanted help from services to enable them to enjoy the pleasures of parenting and keep control of their ‘normal’ family life. Accessing social services was seen by parents as stigmatising, and most parents in her study felt that services and resources were ‘inadequate’ or ‘unsatisfactory’. They reported a lack of information about services, slow responses to requests or crises and inflexibility in the services actually available (Beresford 1994). There was abundant evidence of what parents wanted in respect of support for themselves in their caring roles, but their negative experiences far outweighed their positive ones. Read (2000), similarly concluded 6 years later that despite changes in policy and legislation during the previous two decades, ‘It is clear that services remain patchy and underfunded and as a consequence, children and their families are often pre-dominantly reliant on their own personal coping resources and strategies for much of what they need.’ (p. 8) In more recent years, many social services departments have taken initiatives to improve the situation reported by Beresford (1994) and Read (2000). An example of a local initiative currently in Wakefield is that the Director of Children’s Services meets parents of disabled children at least once per year, to listen to their wishes and needs, and through this forum parents have been able to successfully request changes in services, such as the introduction of a free sitting service in the authority. Carlin & Lenehan (2004) report that the advent of direct payments for disabled children has allowed services to be tailored more precisely to the needs of individual children and their families, creating more flexibility and giving parents greater influence and control.


1/21/2008 9:57:54 AM


Relevant services are usually provided by specialist teams within children and families’ sections of social services departments or, in some smaller authorities, by specialist workers within generic children and families’ teams. However, a variety of central government initiatives, in the form of the Every Child Matters: Change for Children programme (DfES, 2004) together with the 2004 Children Act are bringing about major changes in the organisation of local authority services for children, including those for disabled children and their families. The 2004 Children Act (part 2, section 10) requires local authorities to take the lead role in the integrated delivery of services through multiagency children’s trusts, to develop a Children and Young People’s Plan and to set up a shared database of children, containing information relevant to their welfare. Many are expected to have completed the required changes by the end of 2006 and all are required to do so by 2008. As a result, services for children in need are provided increasingly by departments or divisions which have recently been reorganised and renamed ‘Family Services’, ‘Children’s Services’ or ‘Child and Family Services’. In Wakefield, for example, where one of the authors is employed, the recently re-titled ‘Family Services’ includes the specialist Children with Disabilities Team. This is staffed by qualified and unqualified social workers who specialise in work with children with complex health needs. In other localities, such specialist teams may work throughout the local authority or, more rarely, specialist workers may be part of teams providing a range of services for children and families. Such teams may also include other workers, including paediatric occupational therapists and children’s community nurses. In the Wakefield Children with Disabilities Team, children with complex needs would be identified by specific referral criteria; see Box 9.1.

Box 9.1 Referral criteria for children with complex needs ‘In order for a referral to be considered as appropriate to the team, a child will have a disability to include one or more of the following; a chronic and life threatening or life limiting illness; a significant physical or sensory impairment which results in high dependency care needs; significant learning disability to include difficult and challenging behaviour…. … Referrals which fall outside the remit of the team should be considered for involvement by the Family Support Service.’ (Wakefield, 2003, p. 1)


1/21/2008 9:57:54 AM


Once it is established that a child fits the team’s criteria, the specialist team will undertake an initial assessment and aim to organise the resources and support required to meet identified needs. A worker or workers from the team will be allocated to the household until support is no longer required or the child reaches 18 years, when following a period of transition they will be transferred to adult services.

Circumstances where social workers become involved with disabled children and their families Social workers are involved with families of disabled children in several types of circumstances, most of which can be categorised within four broad types: initial diagnosis, early contact with services, times of change or transition, and crisis situations.

Initial diagnosis At the point of diagnosis of a disabling condition, involvement of social services will usually depend upon a referral from a consultant or other health professional. At this critical time, social workers can provide an emotionally supportive role following guidance from the Department for Education and Skills & Department of Health (DfES & DH, 2003), which states that: ‘The way in which parents are told of their child’s disability may significantly affect how they subsequently view and use support services.’ (p. 13) Social workers located in a hospital or alongside a consultant’s clinic are in a prime position to respond to such referrals. Health professionals may also refer families to the link support agency for particular conditions, e.g. the Cerebral Palsy Society which employs social workers and can offer specialist support. Conway et al. (2003) emphasise that at the time they are first told about their child’s diagnosis, parents want specific answers to questions related to the condition. SCOPE, a registered charity for individuals with cerebral palsy (cited in DfES & DH, 2003) offers a good practice framework to professionals who have to communicate to the carers that their child is disabled. Social work support immediately following the diagnosis can help parents to take on board the reality, and adjust appropriately to their child’s needs;


1/21/2008 9:57:54 AM


however, some parents will feel unable to continue to parent their child and will wish to place their child for adoption. In such circumstances, social workers would be responsible for offering parents support in making decisions, ensuring that they are fully informed about any support that would be offered if they continued to care for the child, and that they fully understand the implications of adoption. If the parents wish to continue with their child being adopted, social workers will seek to match the child with an appropriate adoptive carer (through the local authority adoption panel), with a view to an Adoption Order ultimately being made by a court.

Early contact with services During carers’ early contacts with services such as child development clinics, social workers can offer immediate advice about benefits, resources, and the Disabled Children’s Register, and can also advise families about whether their agency can offer relevant services. This is an important time for social workers to ensure that parents and carers receive an accurate and positive portrayal of the potential role social services can play in a child’s life, as they may need to counter negative stereotypes that may have arisen from the media. It is also an occasion to consider whether there is a need for an initial assessment and give advice to parents and professionals seeking services, how referrals can be made, likely timescales and possible delays. The earlier that social services can become involved the more effective services are likely to be. As DfES & DH (2003) states: ‘Effective early intervention and support can produce improvements in children’s health, social and cognitive development and help tackle some of the many social and physical barriers families of disabled children face to full participation in society.’ (p. 4)

Transition Referrals to social services are often made at times of transition and when there are changing or increasing needs. These will include events, such as deterioration in the child’s medical condition, an increase in the child’s size creating different practical care needs or changes in parents’ circumstances. The birth of another child, changes in employment


1/21/2008 9:57:54 AM


or loss of substitute carers from within networks of family and friends can create difficulties for parents to maintain their role of carer to the disabled child. At such times, social services would undertake an initial assessment of the child and carers’ needs, building up a holistic picture of the child’s life and identifying possible resources to meet those needs (DH, 2000). Such assessments may identify the need for services and resources to be provided directly by social services or by other agencies, such as Barnardo’s or a hospice. In practice, families are likely to make use of information only when they recognise it as immediately relevant to their own situation, therefore social workers need to develop skills in establishing relationships with families, which enable them to seek and accept services in the event of changing circumstances.

Crisis situations Regular contact with families and creation of collaborative relationships between social workers and parents can help prevent crisis situations occurring through timely support and advice. However, social workers will become involved at times of crisis when there is a significant risk of family breakdown, concerns over the adequacy of the parenting provided or suspicions of child abuse. At such times, there will often be a need for immediate interventions, and the provision of services in parallel to assessments. These may include statutory interventions under the Children Act 1989 to remove children from their parents’ care and investigations under section 47 of the Act.

Services provided by Social Services to disabled children and their families Services provided by specialist children with disabilities teams or similar practitioners will include initial and core assessments of the needs of children and their families. This will result in planning, co-ordination and review of care packages, along with counselling and emotional support to parents and carers, particularly at the time of diagnosis. Direct provision of family support and care management by social workers as key workers to the family may include transition care planning, or working with parents and carers to develop the skills and strategies necessary to manage difficult and challenging behaviour of children. The team may also be involved with co-ordinating appropriate


1/21/2008 9:57:54 AM


input from other professionals and agencies, giving specialist counselling and support in contexts such as life limiting and life threatening illness, and directly working with children. Specialist teams also provide information about services and benefits available, and are able to give immediate advice by telephone to the public and professionals via advice lines or duty systems. They act as advocates on behalf of children and parents in accessing services and benefits from agencies, and can support families in challenging disabling barriers they may face as individuals or groups. Local authorities are required by the Children Act 1989: Guidance and Regulations Volume 6 to maintain a register of disabled children (DH, 1991a). There is no obligation upon parents to give their child’s name; however, registration is often the start of a dialogue between carers and social services, and enables social services to send out relevant information regarding the service, resources or new developments. They will usually maintain directories of resources for children with disabilities within a district, and provide training and dissemination of relevant information to colleagues working in other child health or education services. Crucially for many families, local authorities provide short break care in various forms. This may involve a ‘sitting’ service, to allow parents to go out, or a carer to come to the child’s home and care for the child during the day. Alternatively social service carers can accompany children to leisure activities such as youth clubs to facilitate their participation. Short breaks at residential establishments can be provided as day care or overnight stays, with specialist day or foster carers; or the more flexible option, often referred to as ‘shared care’, which is outlined in the case example, below. All children who are being accommodated for longer than 24 hours by a local authority are regarded, under the Children Act 1989, as ‘looked after by a local authority’. The local authority through its social workers must, therefore, provide both a care plan and a placement plan detailing the arrangements for that placement, and ensure that ‘accurate, comprehensive and well organised’ records are kept of the child and their placement (DH, 1991b). They may provide direct payments to allow individuals or their parents/carers, on their behalf, to directly purchase care packages, or employ personal assistants. Carlin & Lenehan (2004) explore how such payments form a key part of the government’s strategy for supporting families, and detail parents’ largely positive responses to them in 13 local authorities over an 18 month period. Leadbetter (2004), meanwhile argues in the broad context of public service innovation that offering personalised services will increase people’s expectations and create a new demand-led pressure for ongoing reform.


1/21/2008 9:57:54 AM


Social workers may also be responsible for disabled children who are accommodated on a full-time basis under section 20 of the Children Act 1989 and may undertake assessments of carers under the Carers (Recognition and Services) Act 1995 (DH, 2005), and the Carers and Disabled Children Act 2000 (DH, 2001) (see Read & Clements, 2001). Where necessary, they will undertake or assist with, child protection investigations conducted under section 47 of the Children Act 1989. The needs and experiences of disabled children and their families are unique to them. The following case example does, however, highlight many of the issues which frequently arise and the ways in which social workers typically respond. All names and some details have been changed to ensure anonymity to the individuals involved.

Case example

Toni Thomas

‘Toni’ is the youngest daughter of ‘Mr and Mrs Thomas’ and has complex health needs. She was born 10 weeks prematurely and spent her first 8 weeks in hospital. She has hydrocephalus resulting from intraventricular haemorrhage during her neonatal period (Brett & Harding, 1997) and has a shunt inserted to drain fluid from her brain. She has cerebral palsy (SCOPE, 2006) affecting all four limbs, a severe learning disability, epilepsy, and is fed by a gastrostomy. Remarkably, despite her ventilatory support being discontinued, Toni survived her first very challenging weeks and she is now 8 years old. Toni is of white British origin and lives in a predominantly white area on the outskirts of ‘Northborough’. Toni has an elder brother, ‘Evan’, who has no health problems and was 2 years old when Toni was born. Mr Thomas works full-time and Mrs Thomas is the main carer for Toni. They have limited extended family support; Mr Thomas’ family live a considerable distance away in another part of the country while Mrs Thomas is estranged from her family. Social services were first contacted by the special care baby unit in the hospital, who referred Mr and Mrs Thomas for support and financial advice. At that point, Mrs Thomas was struggling to visit Toni each day, apparently because Mr Thomas had returned to work. An initial assessment was completed which highlighted that child care was needed for Evan, if Mrs Thomas was to be able to visit Toni.

Daily visits were seen as essential to help Mrs Thomas develop an attachment with her daughter and build up the confidence and expertise


1/21/2008 9:57:55 AM


she would need to look after, and manage Toni’s health needs. Mr and Mrs Thomas were given advice through the Child Care Information Service about a variety of local nurseries and childminders who could look after Evan during the day. These particular parents were able to pay for such childcare from their own resources. However, if they had been unable to do so and been assessed as in financial need, the costs may have been covered by social services. Advice was also offered to the parents about their entitlement to the relevant disability allowances and how they could claim these. Mr and Mrs Thomas were assessed as being a relatively self-reliant couple, who had not previously needed support from social services. They remained wary of involvement with social services and were uncertain about whether it was necessary for them and their children. It was important that the parents were supported in their choice of level of involvement with services, therefore the social worker suggested that social services would be able to offer more resources to support the household in the future, in recognition of the possibility that Toni would need an increasing amount of care as she grew up. A great deal of information was given to Mr and Mrs Thomas at the initial visit by the social worker. For example, they were told about the register for disabled children in Northborough and services such as short break, and sitting services which social services could provide. However, like most parents they would need to be given similar information at various points in the future when it became more immediately relevant to them and their situation. ‘Northborough’ also has a Starting Point booklet, which lists details of useful contacts for disabled children and their carers. The social worker kept in contact with Mr and Mrs Thomas, attempting to gradually establish an effective working relationship within which Mrs Thomas, in particular, would begin to trust her and would, hopefully, become willing to talk about how she and Mr Thomas were managing Toni and her needs. Social workers can, through the use of counselling skills such as genuineness, empathy and positive regard, often help families with issues around their acceptance of their children’s impairments. Through open exploration of the guilt, anger, disappointment and failure, which parents often experience, many can be helped to resolve and move on from these feelings (Sloper, 1999). Whilst a child is still in hospital, parents are usually focused primarily on questions of their child’s survival and then by issues about when the child can come home. However, once a child has been successfully discharged from hospital, new questions and issues come to the fore and a different set of professionals become involved.


1/21/2008 9:57:55 AM


Once a child with complex health needs has left hospital, parents like Mr and Mrs Thomas may have to adjust to a stream of frequent visitors to their home. In Toni’s case, a large number of professionals quickly became involved, and Mr and Mrs Thomas had to learn who was taking care of what element of Toni’s health and welfare. This can be a confusing process and sadly parents have to repeat their story over and over again. They frequently describe their lives as being ‘turned upside down’ and their family as being ‘overwhelmed’, as they experience the transformation from being a family who saw themselves as self-reliant and as maintaining control over their daily lives to one whose lives are ‘intruded upon’ by professionals who all play essential but subtly different roles in their child’s life. Whilst social workers may be amongst the many professionals who become involved, they can also play particular roles in assisting parents to make sense of their new lives, acting as a liaison with other professionals and advocating on parents behalf. In Toni’s case, it soon became apparent to the social worker that Mrs Thomas was experiencing increasing anxiety as a result of attending some appointments, especially those which took place away from the family home. First, revisiting the hospital resulted in Mrs Thomas experiencing ‘flashbacks’ related to the early weeks of Toni’s life and especially those occasions when the ventilatory support was discontinued and she and her partner had been told to expect Toni to die. On her visits to the hospital, Mrs Thomas experienced both emotional and related physical problems (panic attacks, nausea) and was, consequently, unable to give a clear picture of Toni’s progress, behaviour and symptoms since her previous appointment, and the doctors found it difficult to establish how Toni was progressing. The social worker recommended that someone accompany Mrs Thomas to appointments. Mr Thomas was the obvious person to do so, but despite efforts by the social worker to liaise with his employers, this was not always possible. It therefore became necessary for the health visitor, community nurse or social worker to attend appointments with Mrs Thomas. The social worker was able to explain the difficulties Mrs Thomas was experiencing and this gave other professionals involved a more complete understanding of the situation. Social workers are sometimes the only professionals who have an opportunity to undertake a holistic assessment of the family situation. They can tell the family’s ‘story’ to colleagues whose professional roles require them to focus more exclusively on specific aspects of a child’s progress and condition. When Toni was 2 years old, Mrs Thomas sustained a fracture to her arm. Mr Thomas was able to take 2 weeks off work to care for


1/21/2008 9:57:55 AM


Mrs Thomas and Toni, but as he was returning to work, it became apparent that Mrs Thomas would struggle to manage with Toni’s care. The social worker arranged for daily home care support to help get Toni up, and to wash, dress and feed her each morning and lunchtime. This service continued until Mrs Thomas was able to resume full care of Toni and the crisis proved to be a ‘turning-point’ in the family’s response to offers of outside assistance. Not only did these events force Mr and Mrs Thomas to accept some immediate practical support, they also led them to consider the need for ongoing support. The full-time role as a carer was having a significant impact on Mrs Thomas’ physical and emotional health; she described herself as being ‘physically and emotionally exhausted’. She had not had a full night’s sleep since Toni was born; she had lost weight and her eczema which had previously been well under control was frequently flaring up. Some home-based support was suggested, which would enable Mrs Thomas to have a regular break from her caring role. Consequently the social worker presented Toni’s case to Northborough’s multi-agency short break panel, which considers the needs of disabled children and their families who may benefit from short break care and allocates resources to them. Her recommendation that the family be offered two 4-hour sessions of support per week was approved. An appropriate carer was assigned to work with Toni and she was soon described as ‘an invaluable support’ by Mrs Thomas, who was now able to complete a weekly shopping expedition during one of the sessions. During the other session when Toni was taken out of the home, Mrs Thomas had 4-hours in which she could choose to rest, to clean the house, to catch up on telephone calls or simply to spend time on her own to ‘recharge her batteries’. The social worker reassessed and reviewed the care package every 6 months, by undertaking a family support review which involved Toni and everybody involved her care, to ensure that the family’s needs were being appropriately met. Toni often needed to be admitted to hospital because of infections; however, when she was 5 years old, the social worker discovered that hospital care episodes were sometimes prolonged as they were also being used to give the family a break from caring. This was inappropriate for many reasons; hospital wards are not ideal environments for healthy children, and Toni was exposed to greater risks of infection. Consequently, the social worker undertook a new core assessment of Toni’s needs, following the Framework for Assessment of Children in Need and Their Families (DH, 2000) which looked in depth, not only at Toni’s individual needs, but also assessed her parents’ capacity to care for her, and environmental factors affecting the family. A specific carers’


1/21/2008 9:57:55 AM


assessment was completed in parallel to this which allowed Mr and Mrs Thomas opportunity to talk about how caring for Toni was affecting their lives, physically, emotionally and psychologically, and what support they thought should be offered to improve their situation. The purpose of such assessments and of ongoing social work support is to pre-empt crises and plan what services and resources a family will need in the future. In this case, the social worker was ultimately doing all she could to ensure that Toni could remain living within her family, while the family received appropriate support. The assessment concluded that Mr and Mrs Thomas had very strong attachments with their daughter, that they loved her dearly and offered care at a very high standard. However, through this assessment and the opportunity to talk openly with each other about how they felt and how they were coping, Mr and Mrs Thomas also concluded that they needed more support for themselves and for Evan. They were advised to consider sending Toni for short break stays with a foster family and referring her to a local children’s hospice, where she could be offered additional support. It was also recommended that Evan be referred to the young carers group run by Barnardo’s for ‘Northborough Metropolitan District Council’ (see Barnardo’s, 2006). Evan had described being ‘fed up with disability’ and spoken about how Toni restricted the time he and both his parents could spend together. It was hoped that the young carers group would offer Evan a chance to meet with other young people in similar situations and that the short break stays would enable Mr and Mrs Thomas to spend more time with Evan. The assessments also highlighted that Mr and Mrs Thomas were isolated from other parents and that perhaps, through a carers support group they could gain valuable support. It was clear that any foster family would need to be able to offer the same high level of nursing skills which Mr and Mrs Thomas had acquired during the previous 5 years. ‘Northborough Social Services’ had decided to recruit more foster carers with these skills, targeting a recruitment drive on hospitals and special schools. This attracted one of the nurses from the children’s ward to which Toni was frequently admitted. She was successfully trained and approved as a match for Toni, and short break stays were offered one weekend per month together with extra day care during the school holidays. Mr and Mrs Thomas expressed confidence in the carer and an effective working relationship soon developed. Such arrangements must be pre-planned and involve an agreement drawn up in accordance with regulation 13 (as amended by LAC (95)14 Respite Care: Series of Short Term Placements of Children) of the Arrangements for Placement of Children (General) Regulations 1991 (see DH, 1995b).


1/21/2008 9:57:55 AM


Despite her severe impairments, Toni has for many years been able to communicate her views and wishes, and it was essential that the social worker undertaking the assessment ascertained these, as she would those of any other child. She did so through direct interaction with Toni and through observation of how she reacted in different situations. She was, also, able to supplement these sources with information from others, such as Toni’s parents and home-based break support worker carer who spent more time with her and was in a better position to understand her communication about issues such as her likes and dislikes. Social workers are required by both statute (Children Act 1989) and professional codes of practice (General Social Care Council, 2002) to take account of the views and wishes of the children and young people they are working with. Despite this, Morris (1998) highlights her finding that too often disabled children are amongst those who are least consulted in routine assessments, while Marchant (2001) suggests that professionals have historically been confused as to who the ‘client’ is, when working with disabled children and their families. She goes on to emphasise that ‘Working in partnership with parents is important, but so too is working in partnership with children.’ (p. 219) Toni’s short break stays were supplemented by the local hospice which accepted Toni as an appropriate referral. They offered ‘breaks’ twice a year when the whole family could stay at the hospice, relax and share care of Toni with others. The social worker continued to encourage Mr and Mrs Thomas to access a local carers’ support group, but they have preferred to contact specialist organisations, such as SCOPE, which are associated with Toni’s health conditions. They have also accessed financial support annually from the Family Fund, a central government fund for disabled children (Family Fund, 2006). This has allowed them to obtain, for example, a new bed for Toni, a washing machine and assistance with a holiday. Subsequent to the core assessment undertaken when Toni was 5 years, Mrs Thomas’ own health deteriorated and she and Mr Thomas found it increasingly difficult to care of Toni. The social worker updated the assessment, highlighting that the family needed further support, if they were to continue to care for their daughter. She recommended a shared care option whereby Toni would become a ‘looked after child’, and the responsibility for her care would be shared between the parents and the substitute carers. With the agreement of Mr and Mrs Thomas, the existing carer was offered the opportunity to be the foster carer, in the context of enhanced allowances to compensate her for the loss of


1/21/2008 9:57:55 AM


income due to leaving her job. She was approved as Toni’s long term carer and because of her high level of specialist skills offered the top banding level of fostering allowances. Toni now spends four nights per week with her foster carer and three nights with her parents and brother. The social worker has an ongoing statutory duty to visit Toni at the foster carer’s home to ensure that her needs are being met by this service (Children Act, 1989). Toni’s needs are paramount, but the social worker also plays a crucial role in ensuring that the relationship between the foster carer and Mr and Mrs Thomas continues to run smoothly to meet the needs of all those involved. The care plan is monitored and the placement reviewed every 6 months. Social services are therefore a valuable source of emotional, psychological and practical support for families. They also facilitate access to information about various groups and financial services that offer support and choices to parents about how they care for their children with disabilities or complex needs.

Summary Local authorities are empowered and required by both law and policy guidance from central government to provide a variety of services to disabled children and their families Policy and legislation promotes the view that parents and carers should be supported and included in negotiation of what services they require to allow them to care for disabled children in their family home The needs of individual disabled children and their families are unique and will change significantly over time. They need to be assessed, monitored and reviewed at regular intervals, so that services can be matched to specific situations and changing circumstances Whilst the needs of the disabled child will be paramount, social workers also need to be aware of the needs of parents, carers and siblings

References Baldwin, S. (1985) The Costs of Caring: Families with Disabled Children. Routledge & Kegan Paul, London.


1/21/2008 9:57:55 AM


Barnardo’s (2006) Barnardo’s work with young carers. Available at www.barnardos.org.uk/what_we_do/working_with_children_and_young_people/ young_carers.htm Beresford, B. (1994) Caring for a severely disabled child. Joseph Rowntree Foundation Social Care research paper 54. Available at www.jrf.org.uk/ knowledge/findings/socialcare/sc54.asp Brett, E. & Harding, B. (1997) Hydrocephalus and congenital anomalies of the nervous system. In: Paediatric Neurology (ed. E. Brett), 3rd edn, pp. 493–523. Churchill Livingstone, London. Carlin, J. & Lenehan, C. (2004) Direct Experience: A Guide for Councils on the Implementation of Direct Payments in Children’s Services. Council for Disabled Children, London. Children Act 1989 (1989) The Stationery Office, London. Available at www.opsi. gov.uk/acts/acts1989/Ukpga_19890041_en_1.htm Children Act 2004 (2004) The Stationery Office, London. Available at www.opsi. gov.uk/acts/acts2004/20040031.htm Chronically Sick and Disabled Persons Act (1970) HMSO, London. Conway, S., Littlewood, J., Brownlee, K., Peckham, D. & Members of the Leeds Regional Cystic Fibrosis Units (2003) Cystic Fibrosis in Children and Adults. The Leeds Method of Management, (revised edn No. 6). St James’s University Hospital, Leeds. Department for Education and Skills & Department of Health (2003) Together From the Start – Practical Guidance for Professionals Working with Disabled Children (Birth to Third Birthday) and their Families. DfES, Nottingham. Available at www.surestart.gov.uk/_doc/P0001003.pdf Department for Education & Skills (2004) Every Child Matters: Change for Children in Social Care. DfES, Nottingham. Available at www.everychildmatters. gov.uk/_files/1942C21508345DF943B5F288092AADAB.pdf Department of Health (1991a) The Children Act 1989 Guidance and Regulations: Vol. 6, Children with Disabilities. HMSO, London. Department of Health (1991b) The Children Act 1989 Guidance and Regulations: Vol. 4, Residential Care. HMSO, London. Department of Health (1995a) Child Protection: Messages from Research. HMSO, London. Department of Health (1995b) LAC (95)14: Respite Care Series of Short Term Placements for Children. Available at www.dh.gov.uk/assetRoot/04/01/ 25/11/04012511.pdf Department of Health (2000) Assessing Children in Need and their Families: Practice Guidance. Stationery Office, London. Available at www.dh.gov.uk/assetRoot/04/07/93/83/04079383.pdf Department of Health (2001) Carers and Disabled Children Act 2000. Carers and People with Parental Responsibility for Disabled Children. Practice Guidance. DH, London. Available at www.carers.gov.uk/pdfs/practiceguidecarersparents.pdf Department of Health (2005) Carers and Disabled Children Act 2000 and Carers (Equal Opportunities) Act 2004 Combined Policy Guidance. DH, London. Available at www.dh.gov.uk/assetRoot/04/11/78/67/04117867.pdf Family Fund (2006) Available at www.familyfund.org.uk/ Glendinning, C. (1983) Unshared Care: Parents and their Disabled Children. Routledge & Kegan Paul, London.


1/21/2008 9:57:55 AM


General Social Care Council (2002) Code of Practice for Social Care Workers and Code of Practice for Employers of Social Care Workers. GSCC, London. Howe Report (1969) Report of the Committee of Enquiry into Allegations of Ill Treatment of Patients and Other Irregularities at the Ely Hospital, Cardiff. Cm 3975. The Stationery Office, London. Leadbeater, C. (2004) Personalisation through Participation – A New Script for Public Services, Demos. Available at www.demos.co.uk Lenz, W. (2002) The History of Thalidomide, Thalidomide UK. Available at www. thalidomideuk.com/proflenz.htm Marchant, R. (2001) Working with disabled children. In: Children in Society: Contemporary Theory, Policy and Practice (eds P. Foley, J. Roche & S. Tucker), pp. 215–223. Palgrave Macmillan, Basingstoke. Morris, J. (1998) Still Missing? Volume 2 Disabled Children and the Children Act, The Who Cares? Trust, London. Read, J. (2000) Disability, the Family and Society. Open University Press, Buckingham. Read, J. & Clements, L. (2001) Disabled Children and the Law – Research and Good Practice. Jessica Kingsley Publishers, London. SCOPE Right from the Start (2003) Cited in DfES/DH (2003) Together From the Start – Practical Guidance for Professionals Working with Disabled Children (Birth to third Birthday) and their Families. DfES Publications, Nottingham. Available at www.surestart.gov.uk/_doc/P0001003.pdf SCOPE (2006) What is cerebral palsy? SCOPE. Available at www.scope.org.uk/ helpline/cps.html Sloper, P. (1999) Models of service support for parents of disabled children. What do we know? What do we need to know? Child: Care, Health & Development 25, 2, 85–99. Swain, J., French, S., Barnes, C. & Thomas, C. (Eds.) (2004) Disabling Barriers, Enabling Environment. Sage, London. Wakefield (2003) Service Specification for the Social Work Team for Children with a Disability. Wakefield Metropolitan District Council.

Other relevant legislation and government guidance Arrangements for Placement of Children (General) Regulations 1991 Statutory Instrument 1991 No. 890. Available at www.opsi.gov.uk/si/si1991/ Uksi_19910890_en_1.htm Department of Health (2003) Direct Payments Guidance. Community Care, Services for Carers and Children’s Services (Direct Payments). Guidance. England 2003. DH, London. Available at www.everychildmatters.gov.uk/_ files/D1679F3952A76FCC32BA4EC99E76FD65.pdf

Further reading relevant to issues raised Department of Health (1998) Disabled Children: Directions for their Future Care. DH, London.


1/21/2008 9:57:56 AM


Jedlicka-Kohler, I., Gotz, M. & Eicher, I. (1996) Parents recollection of the initial communication of the diagnosis of cystic fibrosis. Paediatrics, 97, 204–209. Marchant, R., Jones, M., Giles, A. & Julyan, A. (1999) Listening on all Channels: Consulting with Disabled Children. Triangle, Brighton. Middleton, L. (1996) Making a Difference: Social Work with Disabled Children. Venture Press, Birmingham. Middleton, L. (1999) Disabled Children: Challenging Social Exclusion. Blackwell, Oxford. Miller, P., Parker, S. & Gillinson, S. (2004) Disablism – how to tackle the last prejudice. Scope. Available at www.scope.org.uk/downloads/publications/ 4689-Scope-demos.pdf Oliver, M. (1999) Understanding Disability: From Theory to Practice. MacMillan, London. Prime Minister’s Strategy Unit (2005) Improving the life chances of disabled people. Final report. Available at www.strategy.gov.uk/downloads/work_ areas/disability/disability_report/pdf/disability.pdf


1/21/2008 9:57:56 AM

10

Educational Support of Children with Complex Care Needs David Wray

Illness and disability do not necessarily disadvantage a child; but the way we treat them could.

Key Points Education for children with complex needs may not focus on educational attainment, but on stimulation and quality of life Children with complex needs may regress developmentally rather than progress, which demands specific educational consideration Some children will have enduring complex needs throughout the entire time of their statutory education period

Introduction The current Education and Health Services were developed in response to the fact that in the 1940s a significant proportion of the population were malnourished, basically unhealthy and poorly educated. In addition many adults had debilitating disorders which were completely avoidable had there been corrective intervention when they were children (Lawson & Silver, 1973). Caring for Children with Complex Needs in the Community © 2008 Blackwell Publishing. ISBN: 978-1-405-15177-1



167

1/21/2008 9:58:17 AM


Out of this, as a hope for building a better national future, came the 1944 Education Act and the 1946 National Health Service Act. Although established with similar concepts in mind, the aims of the services have been affected by their reactions to events and they are now essentially serving different client groups. The current education system, because of the recent impact of the national curriculum, has become a system focusing on intellectual athleticism and competitive success. Although laudable from a national perspective, this creates an inhospitable environment for those who experience difficulty in acquiring new skills and knowledge. The situation within the health service for those who are chronically ill is more favourable, as there is often a recognisable transition point on the continuum of health care from mainstream health to continuing and palliative care. Sadly this realisation has not occurred in the education service, and the need for appropriate provision for children with complex care needs is acute and long overdue. There needs to be recognition and acceptance of the idea that the outcome, for many of this particular group, is different to that of the mainstream cohort and this should influence the nature of their education. This chapter attempts to correct this oversight by using the example of a case example to highlight the special circumstances of a child with complex needs, suggesting some positive steps which could be made to improve the situation of children with complex needs within the education system. Case example

Graham

Graham is 8 years old and has Niemann-Pick disease (type C) which is a rare, life limiting, metabolic disorder which can affect adults but occurs most frequently in children of school age. Life expectancy varies considerably. The child may initially seem healthy, but as the condition slowly advances over several years, the symptoms gradually become more numerous, more severe, and increasingly unpleasant and distressing. Initial symptoms may include loss of muscle tone, slurred speech and difficulty with eye movements. As the condition progresses there are seizures, loss of motor skills and intellectual abilities, and problems with mobility, eating and continence. Eventually basic life functions are affected, resulting in breathing difficulties, problems with digestion, heart rate and temperature control. Throughout all of this, the child can retain an awareness of their surroundings and will respond positively to gentleness, kindness and love. At present there is no cure for Niemann-Pick disease.


1/21/2008 9:58:17 AM

Educational Support of Children with Complex Care Needs 169

Graham lives with his family, and has a 5-year-old sister. He is cared for by both parents who have given up full-time, paid employment to become his carers. Graham’s school is a special school catering for children with moderate and severe learning difficulties. Despite the nature of its intake, it had encountered only one pupil previously with a degenerative disorder. This had unfortunate consequences as there was an absence of experience of dealing with this group, and also written protocols to support teachers. Graham travelled to school by minibus along a very busy motorway, which took about 20 minutes. He was well enough to attend school but required constant supervision to monitor the symptoms, some of which were, in themselves, life threatening. He was at a stage where he had lost mobility but was still able to sit up, partially supported, in his specialised seating. He was unable to stand unaided and had lost the ability to speak, swallow or use his hands. He had a gastrostomy, with a pump for daytime and overnight feeding. He understood the world about him in concrete terms and would respond to reassurance and humour. He indicated his emotions through facial expressions, some of which were quite subtle, but were clear to staff who knew him well. He cooperated with instructions and was easily able to distinguish between his regular carers as individuals, and new staff whom he had not seen before. It was clear that he had preferences and was very affectionate towards some carers and teachers, and all the members of his extended family. Activities in school, as well as being educational, were also intended to involve, stimulate and entertain the pupils. They included videos, action songs, reading and practical projects linked to a theme. The artwork would sometimes use hand, finger, or foot prints of the children in a piece of composite design. Use of specialised information technology equipment was facilitated by concept keyboards and touch-sensitive screens. There were visits to the school’s multi-sensory room and the jacuzzi. The children were also taken out of school to sound and music events, educational farms, animal sanctuaries, coffee mornings, the local shops or to a nearby park, though the children who were in wheelchairs and buggies could not easily access the equipment. A local swimming pool was also visited, but the water temperature was too low for Graham. He also benefited from a number of other health linked peripatetic services that were not available in mainstream education. These included physiotherapy, wheelchair services, and the provision of specialised footwear and protective helmets.


1/21/2008 9:58:17 AM


Considering Graham’s educational needs retrospectively, they were catered for by attending a special school; in practice there were difficulties which had to be resolved. Examples of these were: Problems with transport Seating. The contract minibus which was initially used to take Graham and other pupils to and from the school was used as an airport shuttle during the weekends. This meant that time had to be spent every Monday morning readjusting the seatbelts to suit a small child. In addition, owing to poor muscle tone it quickly became clear that Graham required lateral body and head support which was not provided by the seats in the minibus. Schedules. Owing to the unpredictable nature of Graham’s symptoms he might be either temporarily unwell or require a change of pads at the time when the minibus was due to collect him. As the vehicle was on contract hire and was carrying other pupils it could not wait, so often left without him, putting the onus of responsibility on the parents to drive Graham to school using their own car. These problems were eventually overcome by using another vehicle, with the rear seats removed and clamping points fitted to the floor to secure the buggy. This minibus did its usual school run with the other pupils and then collected Graham, when he was ready. It was fitted with a tail lift, thereby removing the need for Graham to be lifted in and out of his folding buggy. Contingencies. Some of the symptoms were potentially life threatening and this raised the real possibility of Graham dying while in transit along the motorway. The school recognised this and accepted that the escort on the minibus should undergo first aid training. She was provided with a mobile phone to alert the school to any problems which might be developing and the driver was told that if a difficult situation should arise the minibus should keep travelling and drive to the school as quickly as possible. Equipment For financial reasons, the school made the decision to use and adapt existing equipment rather than purchase new equipment for one pupil for an indeterminate period of time. This highlights the problems that are created when the decision making criteria have an administrative, rather than a service user focus, which is often the reality when providing core services.


1/21/2008 9:58:18 AM


There was also an associated issue of recognising the individual needs of the child. As the specialised equipment at home was provided only after a thorough assessment of Graham’s needs by an occupational therapist, it would suggest that the school should have recognised the validity of the professional’s decision by providing the same pieces of equipment for the child to use at school. Protecting the ill child Problems can arise if ill and non-ambulant children with complex care needs are placed in a standard classroom setting with overactive, emotionally disturbed pupils. The sick children are vulnerable because they are unable to protect themselves and cannot easily communicate their frightening or painful experiences to the staff. Communicating with the teacher Graham had lost the ability to speak and therefore had to rely on the empathetic skills of the teachers and carers to detect anxiety, discomfort or potential difficulties. Typical examples of where staff initially failed to notice there was a problem were: When he was moved too quickly, or without adequate warning, resulting in panic attacks (which could then lead to an epileptic episode). When the feed rate of the gastrostomy pump was set too high or Graham’s positioning was incorrect, which would result in reflux. Also when the gastrostomy feed lines were not flushed out, causing either a blockage, or infection problems which would then have to be resolved by the parents. When warm clothing was not removed in hot weather. Other children of the same age would have indicated that they wanted a jumper removed or would have attempted to do it themselves. This was of consequence to Graham because of his body’s increasing inability to control his temperature. When Graham needed to go to sleep and was not covered with a blanket to protect him from draughts. His medication caused him to be drowsy and as there was no bed available, he slept in a corner of the classroom on a physiotherapy mattress. He was susceptible to a lowering of his body temperature because of his reduced metabolic rate. Parents are clearly in a difficult situation with regard to resolving the problems listed above. They are dependent on the co-operation of the school in achieving a service appropriate to the special one-off needs of their child. The solutions to these and other problems had to be negotiated with a head teacher who had many other demands placed upon


1/21/2008 9:58:18 AM


him. It is difficult for the parents not to appear fussy and over demanding, and requires them to act as advocates for their children, and educators to staff, to change fixed perceptions and styles of thinking. For service users to do this with a service provider manager who is following set custom and practice is a particularly difficult process.

Good points in the school’s provision of education Many of the teachers and the support staff were very caring. They did their best to provide a high level of individual care while working within a generic special school system. The school allowed the father to spend one whole day a week in school with his child. This proved to be of great benefit to both the father and son as it gave them the opportunity to spend time together that they would not otherwise have had. It was also a chance for the parent and teachers to work alongside each other and benefit from each other’s skills. One of the symptoms of Graham’s disorder was drop attacks, caused by a rise in his emotional state (for example, happiness, fear, excitement); then he would suffer a sudden loss of muscle tone and would ‘collapse’ vertically, the duration of the episode being proportional to the intensity of his emotions. The parents were therefore cautious when an offer was made for Graham to go pony riding with the school. However, despite their reservations, it proved to be a successful and beneficial experience, which he enjoyed. This highlights two issues: The difficulty for parent carers of achieving a balance between their overriding desire to protect their ill child and yet, at the same time, allow them the freedom to experience the many exciting things in childhood which are associated with a young person exploring the world and developing independence. The need for schools, particularly those working with children who have complex needs, to offer as wide a curriculum as possible, with a high level of experiential, out of school content.

Educational context Children with degenerative conditions can present particular problems to the education system because the direction of their progress runs


1/21/2008 9:58:18 AM


counter to that of their peers. As they lose skills, they gradually drift into isolation and can get ‘left behind’ both socially and in terms of the curriculum. In addition carers and teachers of children with static conditions may only require briefing once, as the condition does not change, but in the case of children with degenerative conditions, changes occur and new symptoms appear which require a review of their needs and reassessment of the support that is being offered. This can present challenges, as a partnership needs to be established to allow constructive dialogue between the two expert groups that are involved – the parents, who are the skilled, full-time primary carers (de Geeter et al., 2002) and the professionals, who may feel deskilled by the changes. There are also internal, management issues for the school, concerned with Equal access to education – the perceived needs of the individual child versus those of the other children Resources – funding, finding and using expertise, appointing appropriate personnel, training and equipment Unless there is proactive planning the child may be discriminated against and not provided with the level of service that they deserve and should have by right. The Special Educational Needs and Disability Act (2001) makes it unlawful to treat disabled students less favourably than non-disabled students. This raises the issue of the rights of all children to an ongoing education. If a palliative care perspective is adopted then the educational input is invaluable, as it supports and prepares the child for their particular version of the future (Goldman, 1998). In palliative care, quality of life is a key issue and appropriate educational support by skilled practitioners is therefore essential and not an expensive luxury. The programme of activities should enhance the child’s feeling of being valued and wanted and should successfully occupy them in a creative and pleasurable way.

Setting the scene For most children, being ill is a transient episode causing temporary discomfort and mild disruption in their everyday activities. Attendance and progress at school are affected for a limited period only. For a minority, however, being ill is a major life event, which has a profound effect on their future; changing perceptions and expectations; dramatically influencing lifestyle and quality of life; and sadly for some individuals, threatening the very existence of life itself. The Association


1/21/2008 9:58:18 AM


for Children with Life-threatening or Terminal Conditions and The Royal College of Paediatrics and Child Health (ACT & RCPCH, 2003) recognise that children with deteriorating conditions should be regarded as a discrete group with their own special difficulties within the wider group of sick children. The provision of education (in its widest sense) for children who are sick is essential in order to provide stimulation and improve their quality of life. It is also a legal entitlement and covers education at school, home and in hospital (DfES, 2001a). This can add to the complexity of care provision but should not be a barrier, as the focus is the needs of the child and not resource, administration, or personnel issues, as illustrated in the case example. If a child misses school due to sickness or ill health, there are minimum national standards for education that can be provided out of school (DfES, 2001a). The standards propose that alternative teaching should be arranged for children who miss education for more than 15 consecutive school days, and that there should be a minimum of 5 hours per week. This may be increased if necessary to avoid the child falling behind in their education.

Nature of the educational input When parents are considering the education of their child with complex needs, they are mindful not only of academic and performance related matters, but also of medical care, and quality of life issues. For a family whose life is totally affected and controlled by the child’s illness, the quality of the child’s school life assumes an enormous significance (Wray & Wray, 2004). To focus on academic achievement, where care is a secondary activity, ignores quality of life issues. However, a focus on care and quality of life as an educational approach can be as valid as an academic one because it meets the child’s changing needs and impacts directly on the child’s ability to respond to any academic input (Lawton, 1973). Children with complex needs are often perceived as transients within the education system, the expectation being that they will quickly succumb to their illness. This is not always the case; some children go through their entire schooling suffering the effects of their condition and experiencing difficulties. Schools should not underestimate the difference they can make to the quality of life of these children. With careful planning, appropriate activities and sensitive teaching, the school can make a significant and very worthwhile contribution towards improving the life of the child. The teachers and support staff can also


1/21/2008 9:58:18 AM


be content in the knowledge that their input has the double benefit of being therapeutic as well as educational. Wiles (1987) suggested that education was beneficial for sick children as teachers were more able than play leaders, or parents, to occupy and stimulate children in hospital. Parents caring for children with complex needs strive to continue with as normal a daily life as possible, within the constraints of the care situation, which includes education as part of a child’s normal life. Education is therefore a normal constituent of the activity of children whatever their cognitive or medical condition.

Rights of the ill child to education Education is a basic human right for children; it is a vehicle for self improvement and personal fulfilment. For children who are sick, education is essential in order to give them the confidence and reassurance they need to take part in the normal life of the community on an equal level with others. Articles 1–41, of the UN Convention on the Rights of the Child, set out the rights of children, and the corresponding obligations of governments to safeguard those rights. Moreover, articles 28 and 29 state that a child’s right to education is not only a matter of access but also one of content and quality (United Nations Convention on the Rights of the Child, 1989). The statutory guidance for access to education for children with medical needs (DfES, 2001a) requires that local education authorities (LEAs) should have systems in place to communicate and work in partnership with all agencies involved in the child’s care. Seymour (2004) summarises the processes that schools and the LEAs should have as A written policy to deal with children who are unable to attend school for medical reasons A named contact Clear referral procedures Effective multi-agency working practices Collaborative partnerships with parents and pupils Education can then be provided according to the child’s needs; this may be as reduced attendance, or modified teaching at the child’s own school, through hospital schools if the child is in hospital, or via pupil referral units, which provide home tuition. Hospital schools are maintained by LEAs within hospitals and do not have a legal requirement to


1/21/2008 9:58:18 AM


offer the National Curriculum, due to the special nature and variable circumstances of children that may be attending (DfES, 2001a). This contrasts with special schools that deal with a similar group of children but still have a responsibility to provide a National Curriculum education.

Special educational needs The concept of special educational needs (SEN) arose following the Warnock committee investigation (Warnock Committee, 1978), into the education of disabled children. From this, a procedural framework was suggested which linked service provision to identified need; this was supported by legislation in the form of the Education Act 1981 and 1996. The process of assessing a child’s special education needs became known as a Statement of Education Needs. Subsequently the Children Act 1989 proposed that disabled children should be included as children first, which encouraged the view that whenever possible mainstream education services could provide education for disabled children. Read & Clements (2001) give an overview of UK policy and research that has influenced the treatment of disabled children. Children with complex needs are a group with very special educational needs, particularly those with degenerative disorders, where there is an eventual loss of specific abilities. They require a timetable, staffing, curriculum, emotional support, understanding and an environment which is appropriate to their situation. Schools are based on an assumption of pupil progress; they are now judged and ranked according to the rate and success of that progress. The curriculum is structured in terms of attainment levels including the foundation stage curriculum and the National Curriculum (DfES, 2001b). A child who is regressing as a consequence of a life-threatening illness is the antithesis of that organisational and curriculum ethos. It is not surprising that both the child and the professionals working within the school feel challenged by the situation. The SEN code of practice (DfES, 2001c) tends to be written exclusively in terms of continual progress with only temporary set-backs in the child’s development. Consideration of how children suffering from degenerative or lifelimiting conditions can be helped to overcome their difficulties and strategies for meeting these needs therefore need to be addressed (Closs, 2000).


1/21/2008 9:58:18 AM


Statement of Special Educational Needs A Statement of Special Educational Needs describes the needs of a child, and specifies the special education required as well as the type of school the child should attend. LEAs have a responsibility to arrange to meet the education needs specified, and the governing body of a school identified in the Statement has a duty to admit the child if it is named in the statement (www.teachernet.gov.uk). The first stage of the process is the statutory assessment. This may, but will not always, lead to a statement. When referring a pupil for statutory assessment, written information is submitted by the head teacher or special educational needs co-ordinator (SENCO) which gives the reasons for the request and includes the following evidence: The views of the pupil and his or her parents. The school’s own assessment of the child’s progress over time, including records of action taken by the school under School action and School action plus of the Code of Practice (DfES, 2001c) including individual education plans (IEPs) and the outcomes of reviews. Copies of any advice provided by health and social services. Any reports from specialists from outside the school such as educational psychologists, advisory teachers and therapists. Details of any involvement of the education welfare service or social services or of other professionals. Details of the extent to which the school has followed advice from outside agencies. An LEA will normally decide to make a Statement only when it concludes that the special educational provision necessary to meet the pupil’s needs cannot reasonably be provided within the resources available to the school. Every 12 months there must be an annual review to check the pupil’s progress and the statement’s continuing relevance. The head teacher must seek advice from interested parties, arrange the annual review meeting and submit a subsequent report on the meeting to the LEA and to everyone concerned in the review. The view of the young person should be sought and they should be invited to the annual review meeting. The annual review should aim to Assess the pupil’s progress towards meeting the objectives specified in the statement, and collate and record information to help in planning support for the child.


1/21/2008 9:58:18 AM


Review the special provision made for the pupil, including the appropriateness of any special equipment provided. Consider: The continuing appropriateness of the Statement in the light of the pupil’s performance during the previous year. Any additional special educational needs which may have become apparent in that time. New targets for the coming year, if the Statement is to be maintained. Whether to cease to maintain the Statement. (www.teachernet.gov.uk) There are problems in trying to apply the statementing process to the situation of a child with a degenerative condition, owing to their expanding needs, which will ultimately result in some of the objectives not being met. Increasing input will be towards the end of the process, as more and more information needs to be included and the reviews become increasingly complicated. There is a greater emphasis on care and medical issues with the total number of people involved in the care process increasing considerably, which necessitates a co-ordinator. More pressure can be placed on the parents as they are the only people who have an overall integrated view, leading to potential conflict and stress. Staff may not recognise the unique nature of the situation and may see the parents as over anxious, or over protective, when they produce increasingly lengthy lists of needs and care requirements. Parents, uncertain of the procedure and unsure as to the degree of detail required, can find the reviews increasingly stressful. In the case example, the parents of Graham found the whole of the above process to be particularly difficult, and an unwelcome additional burden. As Graham deteriorated and his symptoms became more severe, the Statement of Educational Needs became increasingly inaccurate, inappropriate and inadequate as a description of his needs. The education personnel who were involved with Graham’s Statement were reluctant to redraft the document as, at that time, it was a lengthy process and would have resulted in even more delays, so it was decided to work with what already existed. In order to requisition the support services that were needed, ongoing negotiation was required between the parents and the various agencies that were involved, as well as flexible interpretation of the Statement by managers. At the ‘annual’ Statement reviews (which had to be more frequent than annually owing to changes in Graham’s condition) there could be ten or more people in addition to the parents. This necessitated the taking of minutes and a


1/21/2008 9:58:18 AM


social services manager having to chair the meetings. For the parents, an additional and distressing feature of the reviews was the fact that as the targets listed in the Statement became unobtainable, they were crossed off with a neat ruled line. Although the parents could see the reason for this, it meant that they could see their child ‘disappearing’ on paper.

Strategies for schools The school should recognise children with life limiting illnesses as a discrete group The health service recognises children with life limiting illnesses as a discrete group with their own special difficulties within the wider group of sick children; palliative care teams and children’s hospices are practical examples. This encourages a view that children with complex needs should receive similar recognition by education services as a special group with particular special needs (ACT 2003). A recognition of children with complex needs as a distinct group within the school would avoid the assessed needs of the individuals being minimised. Resources should be established for the group rather than drawn from already existing resources and adapted in a makeshift way. Being within the recognised group should automatically trigger certain responses and initiate the provision of particular resources, for example, statementing, good home–school liaison, emotional support, and at a later stage, home tuition.

The school should plan ahead to meet the special needs of children with life limiting and complex needs Children with degenerative conditions are individuals at odds with the generally accepted organisational ethos of a school, which assumes progress in terms of age, curriculum, attainment and assessment. To overcome this difficulty, each school (whether special or mainstream) should establish a working party to look at the care/curriculum/ medical/pastoral/social/family issues that arise for children whose progress and development is largely negative as they regress, losing communication, mobility, fine motor and cognitive skills. In addition, good practice guidelines with regard to the curriculum, environment and care issues in school for children with degenerative conditions could be developed using the experience of providing educational care


1/21/2008 9:58:19 AM


to particular children with complex needs. A specific member of staff should be identified (usually the SENCO) to act as a pro-active contact exclusively for these children and be the focus for the many medical/ care/pastoral issues that are associated with the child

The school should provide background medical and care information for its staff As many staff in mainstream schools are not familiar, in their current professional roles, with care and medical issues, it would be helpful if there could be easy access, by teachers and other professionals, to a database which describes degenerative, life limiting and life threatening conditions and lists the impact of the symptoms on the child’s education and quality of life in school. This could then be added to by individual schools within the system and, in the longer term, could form the basis of a local education authority handbook of care and good practice. The Contact a Family Directory of Specific Conditions and Rare Syndromes in Children would be helpful in this respect, particularly as it is now available in electronic format via the internet (www.cafamily.org.uk).

The school should establish principles of procedure It is important that a holistic approach is adopted by all those working with the family and its individual members. All members of the family are affected by the illness, which raises issues for dealing with parents and siblings who may have subsequent health or psychological needs that may need addressing. The ACT & RCPCH (2003) guide to development of palliative care services recommends that all staff working closely with families should have psychological support and training to enable them to provide appropriate support to families of children with life limiting illnesses. This applies to school teachers and carers who could be sources of support to the whole family.

Home tuition Home tuition for children with complex needs is not an extension of school but is a unique service provision that is specifically designed to meet the needs of a child and family living under particular circumstances. Education at home is offered for children when they cannot attend school for more than 15 working days, although this may not apply to children with long term illness or life limiting conditions.


1/21/2008 9:58:19 AM


In these situations the local education authority has a responsibility to assess the educational needs of the child, with the proviso that education should continue for children as long as the child is well enough to benefit from it, whether at school or home (DfES, 2001a). However, the Advisory Centre for Education (ACE) notes that there is a danger that home tuition may be refused by a local education authority on the grounds that ‘a child unfit for school is unfit for education at all’ (ACE, 1999, p. 1). This overlooks the fact that there are many other reasons why an ill and disabled child may not be able to attend school but still benefit from home tuition, such as a susceptibility to serious chest infections, difficulties over school transport or supervision problems at school, associated with distressing, unpredictable and possibly life threatening symptoms. Service providers can experience difficulties when an individual service user’s needs fall outside the usual service provision. This was the situation for the family in the case example. The parents found that they had great difficulty in obtaining home tuition that was appropriate to their child’s needs. It was eventually provided by the LEA, but only after a considerable delay. To support home tuition, an education team with specific skills will be required if they are to work successfully with children who are ill with a complex mix of symptoms, possibly disabled to some degree, experiencing learning difficulties and may be technology dependent. To have maximum effect, they may either have to work within a multidisciplinary team, or be able to cross orthodox professional boundaries and be prepared to undertake activities not normally associated with their usual role as an educator. This has service implications for the preparation and training of staff, and also raises the issue of ongoing support for the members of the home tuition educational team when undertaking this difficult role. An issue for those providing home tuition is that although the range and nature of the activities may change and gradually become more restricted, variety is still required. Clearly the activities will be based on meeting an individual’s emotional, social, physical, intellectual and spiritual needs, but there should also be an associated element of challenge, excitement and mystery, with some degree of interaction with the environment, which will vary with each child.

Educational activities for children with complex needs There is an assumption that education is almost exclusively about skill and knowledge acquisition as a way of preparing the individual for their


1/21/2008 9:58:19 AM


place as an independent and productive member of society. Although what is taught may prepare the child for the future, education is also relevant to the present through consideration of the age, ability, gender and cultural background of the child. For ill children, their immediate world may be a little smaller than that of their peer group, but it is still important that they understand it and appreciate how it affects them. The experience of most teachers, whatever the age of the pupil, is that children perform best in tasks that make sense, or have relevance to their world and their everyday lives. To exploit fully the educational potential of the teacher, it is important to encourage the child to use as many everyday skills as possible, particularly those that are likely to be affected by the condition. This will help to maintain specific muscle and nerve functions, general co-ordination abilities, overall activity and awareness levels, and independence. The more varied the experiences, the greater the likelihood of skill transference from one situation to another. The development of personal qualities is also important as that has both an immediate and long term use. Practical activities are always worthwhile. For example, art and craft work is a useful activity that children enjoy. It is relaxing and it allows conversation and co-operation with others. It may be two or three dimensional, done independently or with the help of the carer. The children can be involved to varying degrees, depending on their abilities and how they feel on a particular day. For children with severe motor problems, whose direct involvement may be limited, it might require the use of strategies that enable them to be represented in some way, in the project. For example, by using finger, hand or foot printing, a composite picture might be built up and the child can clearly see that they have a sense of involvement and ownership. There is a hidden value as they contribute to a finished product that they can handle, but it can also form the basis of future interaction and praise, by being displayed in the child’s room and its qualities commented on by visitors. In the longer term, it is an item that the parents can keep if their child dies.

The importance of contact with other people and environment Contact with other people will positively add to the educational experience of the child; having a friendly and enthusiastic adult in the room allows children to see things with fresh eyes which can add an extra dimension of excitement and interest, even to previously rehearsed activities, giving any teacher an immediate advantage. The teacher can function as an ‘interpreter’ and mediate between the child and their


1/21/2008 9:58:19 AM


surroundings. A steady conversation to accompany everyday activities that the child finds difficult, for example drinking, can be worthwhile if it assists the child and offers an opportunity for praise. It will serve to make the child feel rewarded, valued and the centre of attention. This can also apply to the wider range of less routine activities that result from the teacher’s input. As well as providing a range of interesting activities, there is also a need to provide as stimulating an environment as possible. The surroundings need to be quiet, warm and well lit, with plenty of natural daylight. The ceiling could well be a focus for objects and pictures; luminous planets, brightly coloured fabric shapes which move in a draught, either from an open window or a fan. Also wind chimes, moving lights on the ceiling and walls or reflective, reciprocating and rotating devices will all catch the child’s attention, and can be used as a focus of education and discussion.

Respecting the individual It is important that the intellectual abilities of individuals with degenerative disorders are respected. They have not always been as they are now and any deterioration is likely to be selective and differential. Although they may have difficulties with outward communication, they are often fully aware of the communication of others and will still be using the many interpretive skills that are associated with the apparently simple act of verbal communication; for example, noting facial expression, intonation, attitude and manner, body language, posture and position in space relative to the listener. Belief in the child reinforces their self perception of being important, respected, trusted and held in high esteem. The child will see from the actions of those about them that they are valued as individuals. In addition, if the assumption is made that the child does have an understanding of what is being said to them and an awareness of what is happening around them, then this will ensure a constant flow of sensory information which will engage and stimulate them.

Particular issues that may have to be considered by educational teachers and carers Language skills Children with degenerative disorders might well start to experience difficulties with the interpretation of language, particularly if it involves


1/21/2008 9:58:19 AM


abstract concepts. They seem to find it easier working in concrete terms. For example, open ended questions involve too many stages for the child to be able to formulate a response. Closed questions, with the subject in front of them, are much simpler.

Impaired vision One of the difficulties which may face children with complex needs is impaired vision. Increasingly poor co-ordination can result in double vision, problems with tracking moving objects and difficulties in focusing or refocusing quickly on a point in space. This may be superimposed on an already present visual problem which is symptomatic of the disease. This can result in blurred, unidentifiable figures or faces, suddenly appearing from nowhere within the child’s field of view and then, equally quickly, disappearing without warning. For a child whose world is already limited by restricted head movement and general loss of mobility, losing the ability to scan and assess the immediate environment can be very frightening. If the carers are aware of these difficulties then they can compensate by giving clues to their identity and their intended activities by allowing the child to use their other senses. If they all follow the same few guidelines it will make the child’s life a little more understandable and make them feel more secure and comfortable. Possible suggestions for information that guidelines may include are: Greeting the child by name and the carers saying who they are Giving explanations and maintaining a commentary Making sure their face is within the child’s field of view when talking to them Allowing the child to touch and smell a product before it is used, in order to reassure them Consistent use of perfumes to aid identification Using a touch, stroke or gentle word as an addition to a smile, in case it cannot be seen Care also needs to be taken over the positioning and brightness of lighting. Difficulties can be caused by glare from ceiling lights or by bright sunlight coming through windows. At home, consideration needs to be given to the relative positions of the bed and the windows to avoid the carers being back-lit. It is better to have artificial light sources, controlled by dimmers, positioned behind the child.


1/21/2008 9:58:19 AM


Maintaining contact If the condition of the child deteriorates, there is the potential for the child to become trapped inside an uncooperative mind and body. This raises an issue of emphasis with regard to communication. Where should the focus be: on the child who cannot speak or the listener who may not understand? It might initially appear that children who have lost their ability to speak should be taught other, recognised methods of communicating. However, they may have impaired cognitive and motor skills which may well preclude this. The emphasis on the transmission of information overlooks the role and the skills of the receiver. For the perceptive carer, there are a host of cues which can give some indication of the child’s physical, mental and emotional state and even of their thoughts and wishes. General indicators are posture, verbalisation and facial expression. More specific, body language indicators include gesture, positioning of head and limbs, degree of eye contact, muscle tenseness and the movement of eyes, eyebrows and lips (Child, 1981). In addition, holding the child’s hand can give reassurance and allow back and forth acknowledgement, usually by a slight movement of the fingers or a gentle increase in pressure, linked to speech, facial expression and gesture. The general aim, whether at home or school, is to provide a settled, happy and stable environment in which the individual can participate in a largely sensory curriculum, offering a range of experiences, some intended to relax and others intended to excite. Overlaid on this is the individual’s physical state at any given time, which will to a large extent, control the nature of the activity. This places a responsibility on all those who make a contribution to the education of children with complex needs, to ensure that they provide the high quality of service that these children deserve within their shortened lifespan. A trained and experienced professional, with their knowledge, experience and skill can make an important contribution to maintaining the quality of a child’s life and ensuring that the later periods are filled with interest, excitement and happiness. Summary Children with complex needs require special consideration and assessment of their needs in order to obtain benefits from the education system (Continued)


1/21/2008 9:58:19 AM


Summary

(Continued)

Parents of children with complex needs should be included when planning educational services to meet their child’s needs LEAs need to consider children with complex needs as a group of children that require particular resources and services The production of specific guidelines to manage the education of children with complex needs as a discrete group could focus on education as an aspect of quality of life, rather than educational attainment

Useful websites www.teachernet.gov.uk www.cafamily.org.uk

References Advisory Centre for Education (June, 1999) Information sheet: Education of Sick Children. ACE, London. Association for Children with Life-threatening or Terminal Conditions and their Families (2003) Voices for Change. ACT, London. Association for Children with Life-threatening or Terminal Conditions and their Families (ACT) & Royal College of Paediatrics and Child Health (RCPCH) (2003) A Guide to the Development of Children’s Palliative Care Services. ACT, Bristol. Child, D (1981) Psychology and the Teacher. 3rd edn. Holt, Rinehart & Winston, London. Closs, A. (2000) The Education of Children with Medical Conditions. David Fulton Publishers, London. Department for Education & Skills (2001a) Access to Education for Children and Young People with Medical Needs. DfES 0732/2001. Available at www.dfes. gov.uk/sickchildren Department for Education & Skills (2001b) Special Education Needs. A Guide for Parents. DfES Publications Centre, Nottingham. Department for Education & Skills (2001c) Special Educational Needs Code of Practice. DfES 581/2001. DfES Publications Centre, Nottingham. de Geeter K, Poppes P & Vlaskamp C (2002) Parents as experts: the position of parents of children with profound multiple disabilities. Child: Care, Health & Development 28, 6, 443–453. Goldman, A. (1998) Care of the Dying Child Oxford University Press, Oxford.


1/21/2008 9:58:19 AM


Lawton, D. (1973) Social Change, Educational Theory and Curriculum Planning. Hodder & Stoughton, London. Lawson, J. & Silver, H. (1973) A Social History of Education in England. Methuen, London. Read, J. & Clements, L. (2001) Disabled Children and the Law: Research and Good Practice. Jessica Kingsley Publishers, London. Seymour, C. (2004) Access to education for children and young people with medical needs: a practitioner’s view. Child: Care, Health & Development, 30, 3, 249–254. United Nations Convention on the Rights of the Child (1989) UN, New York. Warnock Committee (1978) Special Educational Needs. Report of the Committee of Enquiry into the Education of Handicapped Children and Young People. HMSO, London. Wiles, P. (1987) The schoolteacher on the hospital ward. Journal of Advanced Nursing, 12, 631–640. Wray, D. & Wray, S. (2004) Andrew: a journey – a parents’ perspective. Child: Care, Health & Development, 30, 3, 201–206.


1/21/2008 9:58:20 AM

Index

assisted respiration 36 Association for Spina Bifida and Hydrocephalus 125, 127

Disability Living Allowance 125–6 discharge planning 29–30, 65–6 barriers 66

benefits 135 business case 26–7

Early Support Programme 80 empowerment 135 enteral tube feeding 57–73 definition 58 equipment 67, 69 professional support 61 psychosocial factors 62 equipment 13, 14–15 consumables 15 provision 14 within housing 14–15 Every Child Matters 5–6, 22, 24, 32, 36, 94 exclusion from services 82 expert parents 41, 65, 133, 135

care package 26 child development teams 96–7 child support 25 Children Act 5, 13, 22, 94, 101, 107, 137, 152 Children and Young People’s Plan 24, 152 children with disabilities 5, 9 children’s commissioner 5 children’s community nurses 7–8, 26, 27–8, 50 skills 29, 30 Children’s National Service Framework 5, 13, 24–5, 32, 61, 94, 129 Standard 8 6–7, 82, 141 children’s trusts 22, 28, 81 commissioning care 21–34 definition 22 framework 22–3 Common Assessment Framework 15, 94, 99–106 community care 4 continuing care guidance 22 co-ordination of services 61, 70 cost of caring 83 counselling 158 direct payments 83, 151, 156 director of children’s services 28, 32, 107, 151 disability 75–6 definition 76 financial factors 83 social model 76, 150 Caring for Children with Complex Needs in the Community © 2008 Blackwell Publishing. ISBN: 978-1-405-15177-1

Teare Index.indd 189

family centred care 50 funding care 13 home assessment 52 home tuition 180–1 hospice 133 isolation 135 joint area review 31 joint working definitions 96 Joseph Rowntree Trust 126 key worker 25–6, 51–2, 80, 98 lead professional 97–8 life limiting conditions 9 long term ventilation 37–9 carers 39–41 definition 37


189

1/21/2008 9:59:01 AM

190 Index

long term ventilation (contd.) guidance for discharge 38–9, 41 support required 38 ‘looked after child’ 162 Mobility Scheme 125 multi-agency care 12–13 collaboration 78–81, 95 family experience 79 needs assessment 26, 32 negotiation of care 50 oxygen dependency 46–9 discharge criteria 46–7 equipment 10–11 parental experience 151 parental participation 3–4 partnership with parents 142, 162 portage 81, 108–9 prematurity 9, 76 privacy 52 psychosocial impact of caring 63–4 rapid response 29 register of disabled children 156 respite care 12, 68, 84–5, 135–44 extra care needs 12 guidelines for carers 68, 85 home-based 136–8 hospice 140–1 quality 141–3 residential 138–9 types 84

Teare Index.indd 190

risk assessment 15, 52 protocols 15 safeguarding children 107–8 school environment 67 shared care 136 link family 136 siblings 143 social services 149–66 foster carers 161, 162–3 short breaks 156, 160 sitting service 156 social work referral 153–5 special education 172–6 rights to education 175–6 special needs 11 special school 169–72 transport 170 Statement of Special Educational Needs 86, 127, 177–9 Sure Start 4, 31 team around the child 97 technology dependent 9–11, 35–55 definition 10, 35–6 long term ventilated 10, 13 numbers 10 Together from the Start 6, 11, 80 tracheostomy 42–5 definition 42 equipment 47 protocols 43–4 suction 43 transition of care 85–8

1/21/2008 9:59:01 AM

Caring for Children with Complex Needs in the Community

Occupational Therapy for Children with Special Needs

Caring for Children and Families

Young Children with Special Needs

Spiritual Healing With Children With Special Needs

Chicken Soup for the Soul- Children with Special Needs

Children with Complex and Continuing Health Needs: The Experiences of Children, Families and Care Staff

Clients with complex needs: interprofessional practice

Educating Young Children with Special Needs

Psychological Processes in Deaf Children With Complex Needs: An Evidence-Based Practical Guide

Caring for Children and Families (Wiley Series in Nursing)

Working with Families of Young Children with Special Needs

The Inner Life of Children with Special Needs

The Emotional Needs of Young Children and Their Families: Using Psychoanalytic Ideas in the Community

commonsense Methods for Children with Special Educations Needs: International Relations and Security in the Digital Age

Commonsense Methods for Children with Special Needs: Strategies for the Regular Classroom

Caring for People with Learning Disabilities (Wiley Series in Nursing)

Helping Children with Reading and Spelling: A Special Needs Manual

Working Families and Growing Kids: Caring for Children and Adolescents

Fun with Messy Play: Ideas and Activities for Children With Special Needs

Children with autism: diagnosis and interventions to meet their needs

Strategies for Including Children with Special Needs in Early Childhood Settings

Teaching Physical Education to Children with Special Educational Needs

Supporting Children with Special Educational Needs: A Guide for Assistants in Schools and Pre-schools

Providing Support at Home for Children and Young People who have Complex Health Needs

Providing Support at Home for Children and Young People who have Complex Health Needs

Storytelling with Children in Crisis

Early Childhood Intervention 3 volumes : Shaping the Future for Children with Special Needs and Their Families

Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations

Monsters In The Woods: Backpacking With Children

Caring for Children with Complex Needs in the Community

Occupational Therapy for Children with Special Needs

Caring for Children and Families

Young Children with Special Needs

Spiritual Healing With Children With Special Needs

Chicken Soup for the Soul- Children with Special Needs

Children with Complex and Continuing Health Needs: The Experiences of Children, Families and Care Staff

Clients with complex needs: interprofessional practice

Educating Young Children with Special Needs

Psychological Processes in Deaf Children With Complex Needs: An Evidence-Based Practical Guide

Caring for Children and Families (Wiley Series in Nursing)

Working with Families of Young Children with Special Needs

The Inner Life of Children with Special Needs

The Emotional Needs of Young Children and Their Families: Using Psychoanalytic Ideas in the Community

commonsense Methods for Children with Special Educations Needs: International Relations and Security in the Digital Age

Commonsense Methods for Children with Special Needs: Strategies for the Regular Classroom

Caring for People with Learning Disabilities (Wiley Series in Nursing)

Helping Children with Reading and Spelling: A Special Needs Manual

Working Families and Growing Kids: Caring for Children and Adolescents

Fun with Messy Play: Ideas and Activities for Children With Special Needs

Children with autism: diagnosis and interventions to meet their needs

Strategies for Including Children with Special Needs in Early Childhood Settings

Teaching Physical Education to Children with Special Educational Needs

Supporting Children with Special Educational Needs: A Guide for Assistants in Schools and Pre-schools

Providing Support at Home for Children and Young People who have Complex Health Needs

Providing Support at Home for Children and Young People who have Complex Health Needs

Storytelling with Children in Crisis

Early Childhood Intervention 3 volumes : Shaping the Future for Children with Special Needs and Their Families

Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations

Monsters In The Woods: Backpacking With Children

Recommend Documents