Health and Social Care Bill

Memorandum submitted by Every Disabled Child Matters (HS 28)

1.0 Summary

1.1 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.

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

§ Contact a Family

§ Council for Disabled Children

§ Mencap

§ Special Education Consortium

1.3 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.

1.4 This submission highlights evidence relating to four key issues that are relevant to the health and wellbeing of disabled children. It is informed by the views and experience of disabled young people and their families throughout and also draws on some of the findings of the Kennedy Review into NHS services for children. [1]

1.5 Firstly, there is evidence that commissioning services for disabled children is a particular area where GP Consortia are likely to find fulfilling their duties challenging, This is in part due to GP’s limited experience of supporting disabled children as their health needs are usually met through a paediatrician.

1.6 We would also like to highlight evidence of the importance of health and social care services being coordinated with education so that disabled children can have their needs met with minimal disruption to their schooling. The Bill as published does not directly address this issue.

1.7 In the proposed new structure the commissioning of services for disabled children is likely to be spread across the newly autonomous agencies. We have therefore provided evidence on the challenges that fragmented services can present.

1.8 To inform the Bills aims of delivering more patient involvement, the last section of our submission highlights evidence of the attitudinal barriers that disabled children are often faced with in getting their voices heard in relation to their healthcare.

2.0 GP’s awareness of disabled children’s needs

2.1 Disabled children will mostly be in contact with a paediatrician to assess their needs and coordinate their health services, rather than their GP. GPs themselves therefore have little experience of the needs of disabled children and, as Sir Ian Kennedy found in his report [1] commissioned by Government last year, GPs have little training in paediatrics generally.

"Despite the high number of children coming into their surgeries, many GPs have little or no experience of paediatrics as part of their professional training. This means that, technical competence notwithstanding, many GPs lack the confidence to assess and treat children effectively, something that comes from specialist training and experience."

2.2 Some disabled children and their families face barriers accessing primary care itself. A report [2] by the Disability Rights Commission highlights the following example:

‘One woman who had three sons with autism spoke of how long waits in the waiting room could lead to her children becoming hyperactive and difficult to control. This resulted in her children becoming very distracted and challenging to communicate with once in the consultation room with the doctor. This same mother spoke of how the doctor at this surgery used to call her sons "the little bastards" due to their behaviour at the surgery. Whilst this woman felt hugely insulted by this comment she never felt able to confront the doctor about it.’

2.3 The same report found that many practitioners did not realise or acknowledge that significant barriers existed or that they may have a duty to make reasonable adjustments to mitigate them. For instance, one practice said:

‘As a practice we do not discriminate, any patient is welcome to use the practice services in the normal way.’

2.4 This evidence regarding access to primary care suggests that it may be a challenge for GPs to take on yet more responsibilities for meeting the needs of disabled children.

2.5 It will be important that when seeking expert advice to help them carry out their commissioning functions ( Section 22 of the Bill/proposed section 14O of NHS Act 2006) that GP consortia have regard to the needs of the whole local population. This must include the needs those, such as disabled children, who GPs may have less experience of, or little training in. EDCM would like the committee to explore how this could be ensured.

3.0 Working in partnership with education providers

3.1 Many disabled children require health related services at school including physiotherapy, occupational therapy and speech and language therapy as well as specific medical interventions. There are often problems with providing such services on the school site or it is not properly coordinated with other activities at school.

"I went to a mainstream secondary school. I did not get to see a physio or OT regularly. This is because I didn’t go to a special school for disabled people. I think health, education and social services need to work more closely together."

Adam (disabled young person)

3.2 This lack of coordination of support presents disabled children and young people with barriers to the participation in education that their peers would take for granted. As Sir Ian Kennedy recognised [3] :

If children do not receive appropriate support from the school, at worst those with severe health problems receive a ‘double whammy’ as their ill-health damages their education by disrupting their schooling, either through being forced to stay at home or by long stays in hospital. Children with severe or long-term conditions receive enormous benefit from continuing their education during their treatment. And there are social as well as educational benefits. Continuing in education is a signal, to the child themself, the parents/carers and the peer group, that a child with a severe or complex health condition continues to belong to the ‘community of children’ and does not become defined by their condition.

3.3 These issues are likely to contribute to the relatively poor attainment and outcomes that disabled children and young people experience. In 2009/10 the proportion of pupils with SEN without a statement achieving achieved 5 or more A*-C grades at GCSE or equivalent including English and mathematics GCSEs is 22.6 per cent, compared to 7.3 per cent of pupils with SEN with a statement, and 66.2 per cent of pupils with no identified SEN. 17% of disabled young people are not in education, employment or training, compared to only 7% of non-disabled people. [4] Latest figures [5] from 2009 show that 12.4% of 16-18 year olds with learning difficulties and/or disabilities (LDD) are not in education, employment or training compared to 6.0% of young people with no learning difficulties and/or disabilities.

3.4 When Schools and health services do not collaborate to meet the needs of children and young people it also has a significant impact on their families. A study [6] by Diabetes UK found, for example, that Half (46 per cent) of primary school pupils with Type 1 diabetes, and a third (29 per cent) of their secondary school counterparts, report their parents have had to reduce hours or give up work to help them administer life-saving insulin injections. It is clear that when children need such support during school hours, local services should work together to ensure that it is available and that disabled children’s health needs do represent a barrier to inclusion.

3.5 EDCM is concerned that the Bill in its current form does not require schools or Academies to participate in Health and Wellbeing Boards. Meanwhile, the Education Bill, currently on it’s passage through parliament, will remove the requirement for schools to cooperate in Children’s Trusts arrangements and the requirement for local authorities to produce Children and Young People’s plans has recently been removed through regulations.

3.6 The coordination of education with health and social care is vital for the welfare and development of disabled children so it will be important that this round of reform of public services strengthens the infrastructure for joint working with education providers rather than weakening it.

3.7 EDCM would like the committee to explore how the legislation could ensure that education providers work closely with health and social care commissioners. This could be through membership of Health and Wellbeing Boards (Section 178, subsection 2) or provisions regarding working closely with those that arrange for the provision of health related services (Section 179, subsections 3-6)

4.0 Accessing specialist and universal services

4.1 Most disabled young people have a range of needs that will be met by professionals from different specialisms, paediatricians, therapists and GPs. This contributes to challenges in coordinating care.

‘My ten year old son has a rare and life-limiting disability and requires ongoing specialist healthcare. In six years I have never met anyone from the PCT, even at review meetings to discuss his care.’

Belinda (parent of a disabled child)

4.2 The proposed reforms will give the NHS Commissioning Board responsibility for commissioning some specialist services with other services nominally being commissioned by GP consortia. The White Paper Liberating the NHS defines specialist health services are 52 services listed in regulations [7] and relating to specific conditions for example the ‘severe intestinal failure service’ or the ‘Vein of Galen malformation service’. None of these services are intended to deliver holistic care but will provide a national system of commissioning particular low volume procedures and services. All disabled children would therefore require services commissioned by local GP consortia and many will also rely on nationally commissioned specialist services.

4.3 It will be important to be clear who will be ultimately responsible for ensuring that disabled children get the full range health services they need to meet their needs. For example for a child requiring ventilation support, it will need to be clear who within in the new system will have responsibility for ensuring a holistic care package is delivered for them. EDCM would like the committee to explore this.

5.0 Participation of disabled children and their families

5.1 Disabled children and young people often find it difficult to make their voice heard when it comes to decisions about their healthcare.

"Doctors don’t listen the first time we say something is wrong, then they listen when it’s too late. They use really long technical words and they don’t always explain what those words mean which is confusing. They get really impatient with us - that’s not nice!"

Lavinia (disabled young person)

"One time I said to the doctor, ‘Excuse me, it’s not about my mum, it’s about me!’"

Kirsty (disabled young person)

5.2 The Bill proposes changes to the way in which service users are involved in the planning and commission of local services. Existing local involvement networks would be replaced with Local HealthWatch organisations (Sections 167-170 of the Bill), which would be represented on Health and Wellbeing Boards and forward major concerns to the Care Quality Commission for investigation, as well as being involved in the provision of independent advocacy services. This may be an opportunity for disabled children, young people and their families to make themselves better heard.

5.3 Parent Carer Forums have been established in nearly all local authority areas in England. These Forums work strategically with local authorities and PCTs to design local services for disabled children. Forums are co-ordinated nationally by the National Parent Carer Forum Network. These Forums are well placed to work with local HealthWatch and HealthWatch England.

5.4 As the HealthWatch organisations are being set up to represent the views of service users it will be important that they have regard to the needs of those that are most impacted by the quality of services and those that have historically struggled to get their voices heard, of which such as disabled children, young people and their families

5.5 EDCM would like the committee to explore how it can be ensured that local HealthWatch organisations have regard to the needs of disabled children, young people and their families. This could be with reference to targeting advocacy services or providing them in a particular way (section 170) or general priorities for HealthWatch organisations (Schedule 13)

February 2011

Annex 1 Key facts and Prevalence data

· There are around 770,000 disabled children in the UK, with 570,000 of those children in England. [8]

· It is estimated there are around100,000 children in England with complex care needs, who need support from a wide range of services. [9]

· Over the last 30 years there has been an increase in the number of people reporting an impairment. Since 1975, the fastest growth in numbers has been for children -- from 476,000 disabled children under the age of 16 in 1975, to 772,000 in 2002. [10]

· Reviews by both the Healthcare Commission (2008) and Sir Ian Kennedy (2010) found major problems in the provision of services for disabled children.

"children with disabilities or those in situations that make them vulnerable, do not always get the attention and care from healthcare services that they need"

Healthcare Commission 2008 [11]

"Finding that their child is entitled to services does not mean that such services are available in their local area. Parents/carers report that services are overloaded, or that they have to travel long distances to receive them."

Sir Ian Kennedy 2010 [12]