ABOUT EVERY DISABLED CHILD MATTERS

  1.  Every Disabled Child Matters (EDCM) is the campaign to get rights and justice for every disabled child. We have been working to raise the political profile of disabled children and their families, and campaigning to get the services and support they need to lead ordinary lives.

  2.  EDCM is a consortium campaign with four members operating as equal partners:

—  Contact a Family

—  Council for Disabled Children

—  Mencap

—  Special Education Consortium

  3.  Between them, the campaign partners work with and represent all of the 770,000 disabled children and young people in the UK, and their families.

  4.  EDCM held a series of Parliamentary Hearings on services for disabled children during summer 2006. In October 2006 a report was published[197] which sets out the evidence taken during the hearings. All quotes below are taken from that report.

EXECUTIVE SUMMARY

  5.  There are around 700,000 disabled children in Great Britain with a diverse range of needs. The numbers of disabled children are growing—particularly those born with complex health needs, and many more disabled children are surviving into adulthood. This presents a challenge to all statutory services involved in meeting the needs of disabled children.

  6.  Disabled children and their families want to lead "ordinary lives". To do this, they require support from a range of services, including health services. For disabled children, health inequalities are directly determined by the extent to which NHS agencies can provide access to universal and specialist health services.

  7.  Unfortunately, the evidence suggests that families have poor experiences of health services. Parents report that universal health services are inaccessible and access to specialist services is variable across the country.

  8.  The direction of central government policy is right, with an emphasis on early intervention—crucial for improving outcomes of disabled children. However much more needs to be done to translate policy into practice on the ground.

  9.  There are several specific areas that require attention to address health inequalities experienced by disabled children, set out in more detail below. However, full implementation of Standard 8 of the National Service Framework for Children, Young People and Maternity Services[198] (standard on disabled children and those with complex health needs), will go a long way to addressing the health inequalities experienced by disabled children.

INTRODUCTION

Disabled children population

  10.  There are around 700,000 disabled children under 16 in Great Britain[199]. In the past ten years, the prevalence of severe disability and complex needs has risen. This is due to a number of factors, including increased survival of pre-term babies and increased survival of children after severe trauma or illness. There are up to 6,000 children living at home who are dependent on assistive technology.

  11.  Children and young people with life-limiting conditions, such as cystic fibrosis, have better life expectancy and improved quality of life, due to improved treatment and support. The number of children identified with autistic spectrum disorders has risen over the last ten years.

Disabled children and health inequalities

  12.  For disabled children, health inequalities are directly determined by the extent to which NHS agencies can provide access to universal and specialist health services.

  13.  An investigation by the Disability Rights Commission[200] revealed "an inadequate response from the health services and governments in England and Wales to the major physical health inequalities experienced by some of the most socially excluded citizens: those with learning disabilities and/or mental health problems." This included disabled children and young people. The investigation found children and young people in particular is the experienced "diagnostic overshadowing"—that is reports of physical ill health being viewed as part of the mental health problem or learning disability—and so not investigated or treated.

Key challenges

  14.  Disabled children require services from both universal and specialist health services. Despite their crucial importance, families frequently report that universal health services are inaccessible.

  15.  Families also experience a postcode lottery in accessing specialist health services. Submissions to the Parliamentary Hearings expressed a high level of dissatisfaction with the services that disabled children and their families receive from health, social care and education services. Parents and professionals described health services as follows:

Good:—parents 16 %, professionals 19%

Adequate:—parents 36%, professionals 46%

Poor:—parents 48 %, professionals 35%

Early intervention

  16.  Intervening early is crucially important in improving outcomes for disabled children—in terms of both promoting development and minimising decline or regression among children with developmental disabilities.

  17.  Government has recognised this: early intervention is emphasised in Standard 1 of the Children's National Service Framework, which states "The health and well-being of all children is promoted and delivered through a co-ordinated programme of action, including prevention and early intervention, wherever possible, to ensure long term gain."

  18.  However, many young disabled children are being excluded from early childhood services because they are being denied the right equipment or because staff lack training and expertise to deliver interventions. Specific interventions are addressed below.

Recent developments—a national health priority

  19.  In the last year the Department for Children, Schools and Families have confirmed disabled children as a priority through new investment in services totaling £430 million—announced in both the Aiming High for Disabled Children review[201] and the Children's Plan[202].

  20.  No specific funding commitments have yet been made by the Department of Health. However, in a recent letter[203], Health Minister Ivan Lewis MP states that disabled children are "at the heart of the Every Child Matters agenda" and confirms that "new growth funding has been included in PCT baseline allocations to enable PCTs to work with local authorities to significantly increase the range and number of short breaks".

  21.  Disabled children have also been included as one of four local priority groups for service improvement in the NHS, through the operating framework announced in December 2007[204]. This is the first time that disabled children have been a priority group for the NHS and demonstrates central government's recognition that much more needs to be done to meet the health needs of disabled children.

  22.  The points below specifically address the terms of reference of the inquiry

The extent to which the NHS can contribute to reducing health inequalities, given that many of the causes of inequalities relate to other policy areas eg taxation, employment, housing, education and local government

Access to hospital / primary health care services

  23.  Disabled children often attend the same hospital two or three times in the same week; this can affect the family`s wider health needs and be disruptive to family, school and working life. Those children and young people who find it hard to wait for long periods in waiting rooms often cannot get primary care appointments that meet their needs—this has to change.

Equipment and wheelchair services

  24.  Equipment services are severely stretched and underfunded. A joint report by Barnardo's and Whizz Kidz[205] states: "Despite a policy and legislative framework that supports better mobility provision, and evidence of the importance of mobility in a child's development, the experience of many disabled children is that the NHS does not provide them with a wheelchair that meets their needs . . . This can slow their development and limit their capacity to take part in everyday activities."

  25.  This report highlights the under-funding of wheelchair services, which has led to strict eligibility criteria. This often discriminates against young children in particular, leading to inadequate or no provision. Additionally, provision focuses too heavily on clinical need and often fails to take into account a child's individual developmental, educational and social needs.

  26.  Time and again children who need multiple equipment items are subject to scandalous delays because of resistance to the funding of sometimes paltry amounts.—Health professional.

Commissioning specialist health services

  27.  A major issue in health services is the commissioning of specialist services. This is particularly important for children who have continuing care needs. The Children's Trust told the Parliamentary Hearings that

"present systems designed to address multifaceted complex health needs seem extraordinarily complex and present too many examples of failure with inadequate clarity about who is responsible for what, resulting in bureaucratic and time-consuming turf wars, sometimes over small amounts of money."

The distribution and quality of GP services and their influence on health inequalities, including how the Quality and Outcomes Framework and Practice-based Commissioning might be used to improve the quality and distribution of GP services to reduce health inequalities

Diagnosis and assessment

  28.  Despite improvements in diagnostic services, too many families are still struggling to get a confirmed diagnosis of their child's disability.

  29.  My son took years to get final diagnosis, we fought and fought to get things sorted out in school, no one would listen until it was too late, and now he has been home for three years, when he should have been able to go to school and be with his peers.

  30.  In our experience diagnosis has been deliberately withheld and private diagnosis ignored so as to avoid the cost of services.

  31.  Why does it take three years to get a diagnosis of autism in some parts of the country and in others it's within six weeks?

  32.  Just as critical for families is the delivery of appropriate information at the point of diagnosis. One family who recently received a diagnosis for their child was given nothing but a photocopied excerpt from a medical textbook by their paediatrician.

  33.  This did nothing to answer our many questions, in fact it raised some more (such as mention of "survival", an issue we never even dreamt we would have to be thinking about).

The success of NHS organisations at co-ordinating activities with other organisations, for example local authorities, education and housing providers, to tackle inequalities; and what incentives can be provided to ensure these organisations improve care

Access to child and adolescent mental health services

  34.  Many children and young people with complex health needs or life-limiting illnesses need psychological and emotional support to minimise stress. In addition, these children and young people are significantly more vulnerable to mental health problems than other children.

  35.  Disabled children have often found it difficult to access child and adolescent mental health services. There have been particular difficulties for children and young people who have autistic spectrum disorders or learning disabilities.

  36.  Children who have a learning disability are not often accepted into the Child and Adolescent Mental Health Service (CAMHS) because some of the CAMHS staff do not feel that they are equipped with the skills to work with children who have a learning disability.—Health professional.

Access to therapy services

  37.  Children's and young people's access to rehabilitation and therapy services is inconsistent across regions, with long waits in some areas. Waiting long periods for rehabilitation and therapy can greatly harm the educational attainment and wider development of individual children and young people, including loss of function and ability. Therapy services may include speech and language therapy, occupational therapy and physiotherapy.

  38.  In my LA children receive therapy services until they are five years old and then they stop. The health service do not have enough therapists to provide continuity of service after five years, whilst they admit that many children continue to have needs. They simply choose not to prioritise in this way.—Education professional.

  39.  Because the focus for children's services is education-led, the therapeutic health needs of children are taking a very low profile in PCTs.—Health professional.

  40.  Our service (Occupational therapy) is only able to address a fraction of children's needs to participate in daily life activities due to scarce resources.—PCT occupational therapy team.

Workforce

  41.  A major issue in accessibility of universal services—including health services—is staff training in disability awareness.

  42.  There is a lack of understanding in universal services about disabled children . . . there is still a belief held by some health professionals that disabled children are not eligible for the universal offer.—Professional.

  43.  In particular, there are a lack of specialist health visitors able to identify problems early and provide appropriate support and advice to families.

Transition to adulthood

  44.  There is much evidence that adult health services are unable to meet the needs of disabled young people.

  45.  Evidence to the Parliamentary Hearings showed that transition in health services was felt to be particularly abrupt, with young people suddenly losing access to key specialists who may have worked with them throughout their childhood.

  46.  Since turning 18, I have been horrified at the health services which my son recently received when he was hospitalised.—Parent.

  47.  Families often report receiving excellent care from specialists such as the community paediatrician and child health team; they are shocked when this model of care stops at transition to adulthood.—Foundation for People with Learning Disabilities.

  48.  Families who may have had consistent contact with specialist health services while their disabled child was younger have to access primary care services to try to get similar specialist support from adult services.

  49.  Having just gone through transition period found health services totally lacking and unhelpful. For example had to have referral from my own GP who has not seen son for years to be referred to go and have specialist foot wear. There was no co-ordination when he left school for this to happen.—Parent.

  50.  There can be huge problems with transition when there is no designated consultant to hand over to and therapies essentially stop.—Health professional.

EDCM RECOMMENDATIONS

Full implementation of Children's NSF Standard 8

  51.  Standard 8 of the Children's NSF sets out standards for health and social care services for disabled children and those with complex health needs.

  52.  It's vision is 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, which promote social inclusion and, where possible, which enable them and their families to live ordinary lives."

  53.  Full implementation of Standard 8 will go a long way to addressing the health inequalities experienced by disabled children.

Improving transition to adult health services

  54.  Health agencies must actively contribute to the multi-agency transition planning process. Particular attention should be paid to ensuring that the needs of disabled young people in transition to adulthood are met through the development of care pathways in health services.

Early identification and intervention

  55.  Multi-agency assessment of need is essential as the catalyst for early intervention. Health and local authority partners also need to plan together to identify and meet the needs of children with low incidence and rare conditions.

  56.  Health agencies should ensure that diagnostic services are available at a local and/or regional level to deliver prompt and accurate diagnoses for every disabled child. The Early Support[206] model should be used and extended to ensure that all parents receiving a diagnosis should receive appropriate information related to their child's condition, including contact details for support organisations.

Access to universal primary care services

  57.  Appointments are arranged to meet the individual needs of child and family. For example: Hospital departments and clinics synchronise their appointment systems as far as possible, to minimise the number of visits; children are offered appointments at school or outside school hours, to ensure a minimum absence from school, and systems are in place to support children who find it hard to wait.

Provision of equipment and wheelchairs

  58.  Provision is timely and disabled children are able to use/access the equipment and assistive technology they need in all places they typically spend time (eg school, home, short-term care settings). Equipment and assistive technology is tailored to the individual needs of the child and their future development.

Commissioning services

  59.  Services for disabled children should be jointly commissioned, using the children's trust model as a basis for developing joint working. To spread risk, commissioning could be done at a regional level, with accountability jointly to Strategic Health Authorities and regional Government Offices.

January 2008

198   Department of Health and Department for Education and Skills (2004). Back

199   Family Resources Survey 2002-2003. Back

200   Equal Treatment: Closing the Gap A formal investigation into physical health inequalities experienced by people with learning disabilities and/or mental health problems. Back

201   Aiming high for disabled children: better support for families (May 2007), HM Treasury & Department for Education and Skills. Back

202   The Children's Plan: Building brighter futures (December 2007) Department for Children, Schools and Families. Back

203   Ministerial letter of 19/12/2007 to local authority and primary care trust chief executives setting out the full Comprehensive Spending Review settlement in relation to priorities for disabled children's services. Back

204   The NHS in England: The operating framework for 2008-9 (December 2007) Department of Health. Back

205   Don't push me around! Disabled children's experiences of wheelchair services in the UK, Neera Sharma with Jan Morrison. Back

206   Early Support is the Government's recommended approach to co-ordinating services across England for young disabled children and their families-see www.earlysupport.org.uk Back