INTRODUCTION

  Whizz-Kidz is the national charity and leading provider of wheelchairs and customised mobility equipment, wheelchair skills training, advice and support for disabled children and young people outside the NHS.

  Whizz-Kidz is focused on addressing the unmet need among disabled children and young people for vital mobility equipment (including powered and lightweight manual wheelchairs) which they are not always able to access through the NHS statutory services[234].

  By providing an effective and timely health intervention, Whizz-Kidz addresses not only a disabled child's clinical and health needs—but also supports their development across the spectrum of outcomes that are envisaged by the "Every Child Matters" agenda[235].

  Providing the right wheelchair, early in life, is essential in order to satisfy basic human rights, and is the first step towards achieving independent living in the future[236]. Independent mobility enables a disabled child to enjoy a full and active childhood. It helps to establish a more level playing field whereby young wheelchair users—who experience paucity of opportunity compared to their non-disabled friends—can actively take part, and develop the confidence and skills to participate fully in society.

  Whizz-Kidz does not receive statutory funding and relies on voluntary funding to deliver its services. We work in partnership with the NHS on a case by case basis wherever possible, and in 2007, launched our first pilot initiative in partnership with Tower Hamlets PCT. Through the pilot we are working under one roof to systematically pool statutory and voluntary sector funding and expertise, to provide children with the right mobility equipment and training that meets their complete needs at school, at home, during play, in adolescence and through the transition to adulthood.

  We actively targeting our resources to support deprived and hard to reach families, who are most at risk of poor health outcomes.

EXECUTIVE SUMMARY

  1.1.1  As a third sector organisation which provides health services directly to disabled children and young people, our submission focuses on the health inequalities that are experienced by this demographic group.

  1.1.2  We believe that the experiences of disabled children provide a particularly illuminating case in point. This is because of the entrenched nature of disadvantage experienced by this group—including poorer educational outcomes, inequality of opportunity, unequal access to health and social services, and an increased risk of poverty[237].

  1.1.3  All of these factors form part of the challenge in tackling health inequality. In the words of Rt Hon Ed Balls "if we can get it right for disabled children we can get it right for all children"[238].

  1.1.4  Despite the complexity, effective and timely health services, provided equitably to all those who require them, can help to reduce health inequality. Moreover early intervention in health can help to initiate an upward trend of more positive and equal outcomes in social and economic life.

  1.1.5  We have drawn on the experiences of young people who have mobility impairments, and their ability to access effective wheelchair services to help illustrate these points and provide tangible examples. In doing so, we hope to identify common themes which are pertinent the broader debate.

HEALTH INEQUALITY: CHILDREN

  1.1.6  The health services provided to children have been described as the "Cinderella Service" of the NHS, in which services have been planned and delivered according to providers' convenience rather than on the basis of a child's need[239].

  1.1.7  This is despite evidence to show that early intervention can prevent health conditions from deteriorating and can improve life outcomes for children.

"the foundations of adult are laid in early childhood and before birth . . . slow growth and poor emotional support raise the lifetime risk of poor physical health and reduce physical, cognitive and emotional functioning in adulthood"[240]

HEALTH INEQUALITY: DISABLED CHILDREN

  1.1.8  Amongst those who are missing out on good health are disabled children. Aside from the existence of a health condition connected to a disability, disabled children have worse than average access to both general and specialist health services which puts them at greater risk of poor health outcomes[241].

  1.1.9  The needs of families with a disabled child, which require input from professionals working across different agencies, are often unmet[242],[243]. Families with disabled children experience a postcode lottery of provision[244]. This is a mounting challenge for the health service as the number of children with complex and significant needs continues to grow[245].

  1.1.10  A recent questionnaire sent to Strategic Health Authorities (SHAs) and Primary Care Trusts (PCTs) on behalf of the Department of Health found a variation from around 3 per cent to around 13 per cent in the proportion of total child health spend on disability services between different SHAs. The same survey found wide variations in the number of health services provided for disabled children (such as wheelchair services, speech therapy, or community equipment).

  1.1.11  The DRC and Mencap have identified significant health inequalities experienced by people with learning difficulties, or mental health problems. Those most in need of health services may find themselves least likely to access the support they need.

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;

  1.1.12  We support the point that health inequality is a multifaceted issue. Disabled children are more likely to have poorer outcomes across a range of indicators compared to their non-disabled peers, such as poorer access education and employment, increased risk of poverty, and lower access to health services resulting in poorer health outcomes[246].

  1.1.13  Because these factors are interconnected, it is important to provide health services that take into account the clinical, social and development needs of disabled children. This requires a multi-agency approach to planning, commissioning and assessment.

An example to illustrate this point

  Over 70,000 children need a wheelchair to meet a clinical need, to satisfy their basic human rights, and to enable them to enjoy an active, independent childhood, just like their peers. Yet many thousands of families face waits of over a year to receive an appropriate wheelchair, or are simply unable to access the equipment they need through their local NHS Wheelchair Service[247].

  Providing inappropriate mobility equipment can result in postural damage, the need for costly spinal surgery, and medication to relieve pain. Aside from the obvious detriment to a child's health, the failure to provide the correct mobility equipment, early in life (an example of an effective, health intervention) limits a disabled child's ability to take part in social and educational activities because they remain dependent on others. Boosting a child's life chances through provision of the right equipment can help mitigate the socio-economic factors which are part of the bigger picture of health inequality.

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

  1.1.14  General health services could do more to support disabled children achieve better health outcomes by embracing the work underway (primarily through the "Aiming High for Disabled Children" agenda) to address the lack of data about the needs of disabled children. This could be achieved through the Quality and Outcomes Framework (a register of complex or specialist needs), or using existing mechanisms such as the Common Assessment Framework and Contact Point database.

  1.1.15  In addition we would support data collection of unmet need, where families are unable to access the services they need through the statutory sector (for example because they have not met eligibility criteria) and have approached the third sector for support. This would underpin improved planning and commissioning of services in the future according to a genuine picture of local need, (rather than on the basis of what the state has historically been in a position to provide).

The effectiveness of public health services at reducing inequalities by targeting key causes such as smoking and obesity, including whether some public health interventions may lead to increases in health inequalities; and which interventions are most cost effective;

  1.1.16  Research has demonstrated that disabled people are more at risk of obesity than non-disabled people. Providing the right opportunities for disabled children to be active and to take part in play activities has been identified as a key policy challenge[248]. Additional steps must be taken to ensure that disabled children have the right equipment, support, and can access an environment in which they can play safely, and be active[249].

Whether specific interventions designed to tackle health inequalities, such as Sure Start and Health Action Zones, have proved effective and cost effective;

  1.1.17  Sure Start children's centres are valued by most of the families who use them[250]. However, more needs to be done to reach out and provide information and support (including accurate signposting and advocacy) to all those at greatest risk of poor health outcomes, including disabled children.

  1.1.18  Research has shown that only five in 27 centres, demonstrated a close working relationship with their local primary care trust[251]. This must change if Sure Start can begin to provide support to families and respond effectively to local need.

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 done to ensure these organisations improve care;

  1.1.19  Despite the focus on multi-agency working contained within the National Service Framework for Children, Young People and Maternity Services, LEAs, PCTs and Children's Trust need to work together more closely to provide services which meet the complete needs of disabled children. This must happen as the user level (multi-agency assessments of need) and at the service planning and commissioning level (to understand and address local need and make use of pooled budgets arrangements under the 1999 Health Act).

  1.1.20  A practical example: providing a child with a powered wheelchair fitted with a riser, may be considered to satisfy an educational need. This is because it enables a child to attend a mainstream school, and take part in lessons and recreational activity with greater autonomy. It is rare for educational authorities to allocate funding to meet this need. At the same time, NHS wheelchair services may find that this kind of provision falls beyond the scope of their eligibility criteria because it is over and above a strictly "clinical" need. If a wheelchair is provided for use in school—it may be restricted and unavailable for use in other settings, even when this may be the preference of the child or parent.

  1.1.21  It is hoped that the PSA target on Child Health and Wellbeing, and the 2008 NHS Operating Framework will help to mobilise local agencies to work together to improve services, and prioritise children's health services to a greater extent. The PSA includes an indicator which measures the experiences of families with disabled children across a range of services delivered by different providers. We hope this may prove effective in driving forward greater partnership working.

  1.1.22  Establishing benchmark standards of care and measuring performance, sharing and rewarding examples of best practice, or innovative local solutions should also be used as drivers for change.

The effectiveness of the Department of Health in co-ordinating policy with other government departments, in order to meets it's Public Service Agreements targets for reducing health inequalities;

Whether the government is likely to meet it's Public Service Agreement targets in respect of health inequalities;

  1.1.23  The cross-cutting nature of children's health inequality is reflected in cross-government PSA targets (also the child health and wellbeing PSA), and in the implementation of the Aiming High for Disabled Children programme which demarcates responsibility across the DoH and DCSF. It is important for the Department of Health to work even more closely with DCSF in order to progress the five Every Child Matters outcomes in full.

  1.1.24  We welcome the fact that children's health services are a priority area for improvement in the 2008 NHS Operating Framework.

  1.1.25  We support the introduction of a robust "core offer" which will outline the entitlement of families with a disabled child to a range of health, social and education services and will set their expectations with regard to transparency, participation, assessment and feedback. This has the potential to help reduce health inequalities among disabled children, in particular the requirement on local authorities to publish eligibility criteria, and drive up the quality of services.

  1.1.26  Health inequalities can only be tackled by identifying and targeting resources towards those groups who are hardest to reach but at the same time most in need of support.

  1.1.27  It is important to remain mindful of the fact that local decision making, although in principle more attuned to local need, can also entrench inequity as postcode practices persist. The onus will be on local agencies and third sector organisations working closely together to understand their population and to design services that reach target groups and enable them to lead healthier lives. At the same times vulnerable groups must be better supported to articulate their needs through better provision of information, and strong mechanisms for participation and feedback.

January 2008

235   Be healthy; Stay safe; Enjoy and achieve; Make a positive contribution; Achieve economic well-being. Every Child Matters; Change for Children, 2005 Back

236   "The right mobility equipment goes a long way towards realising the optimum growth and development of a disabled child, setting them on the right course in life." Professor Sir David Hall (President, Royal College Paediatrics 2000-2003) Back

237   Policy review of children and young people-A discussion paper, HMT and DfES, January 2007, p57 Back

238   Rt Hon Ed Balls MP, speech on childcare and child poverty, June 2007,http://www.hm-treasury.gov.uk/newsroom_and_speeches/speeches/econsecspeeches/speech_est_130607.cfm Back

239   Report of the public inquiry into children's heart surgery at the Bristol Royal Infirmary 1984-1995: learning from Bristol. London: Stationery Office, 2001. Back

240   The solid facts (second edition), Ed Wilkinson and Marmot, World Health Organization Europe, 2003 Back

241   HM Treasury, Aiming High for Disabled Children; better support for families, May 2007, pg 11 Back

242   Sloper and Bereford. Families with disabled children. BMJ, 2006. Back

243   Policy review of children and young people-A discussion paper, HMT and DfES, January 2007, p63 Back

244   Prime Minister's Strategy Unit, Improving the Life Chances of Disabled People (Strategy Unit, 2004, pg114). Back

245   Prime Minister's Strategy Unit, Improving the Life Chances of Disabled People (Strategy Unit, 2004, p35) Back

246   HM Treasury, Aiming High for Disabled Children; better support for families, May 2007, pg 11. Back

247   McColl 1986; Audit Commission, 2000, 2002, Prime Minister's Strategy Unit, 2005, HMT and DfES 2007, Don't Push Me Around! Disabled Children's Experiences of wheelchair services in the UK, Whizz-Kidz and Barnardo's, 2006,http://www.whizz-kidz.org.uk/uploads/dont_push_me_around.pdf Back

248   DEMOS and Play England, Seen and Heard: Reclaiming the public realm with children and young people, November, 2007. Back

249   Key components-lightweight/sports mobility equipment, skills training, accessible play areas and recreational facilities, youth and sports clubs with trained staff. Back

250   National Audit Office, "Sure Start Children's Centres", 2006. http://www.nao.org.uk/publications/nao_reports/06-07/0607104.pdf Back

251   National Audit Office, "Sure Start Children's Centres", 2006. http://www.nao.org.uk/publications/nao_reports/06-07/0607104.pdf Back