Health and Social Care Bill

Memorandum submitted by The Children’s Trust, Tadworth (HS 62)

1. About The Children’s Trust, Tadworth

1.1. The Children’s Trust, Tadworth is a national charity providing specialist care, education, therapy and rehabilitation to children with multiple disabilities, complex health needs and acquired brain injury.

1.2. Our services include residential rehabilitation for children with acquired brain injury (ABI); community-based services for children and young people with ABI; a residential school for pupils with profound and multiple learning difficulties (PMLD) and complex health needs; residential and community-based short breaks (respite care); transitional care between hospital and home for technology-dependent children; palliative care and continuing residential care. All of these services are wholly or partly funded by Primary Care Trusts.

1.3. Our combination of services gives us a unique perspective on the Health and Social Care Bill’s implications for severely disabled children and their families.

2. Summary

2.1. Children with low-incidence, high-cost needs will pose a significant challenge to the new health system. We are concerned that GP consortia may not have the expertise or purchasing power to commission specialist services for this population.

2.2. The Bill must take account of this vulnerable group of children and ensure they do not miss out on the specialist services they need by giving commissioning responsibility to the NHS Commissioning Board.

2.3. The involvement of education and other local authority providers in Health and Wellbeing Boards should be put on a firm statutory basis.

3. About the children we work with

3.1. The children and young people to whom we provide services are amongst the most severely disabled in the UK. Many of them have profound learning disabilities and need to be supported in every aspect of their daily living. They are mostly unable to walk or talk and many depend on technology to keep them alive, through gastrostomies, tracheostomies or artificial ventilation, requiring round-the-clock nursing care. Some have rare and complex genetic conditions like Rett Syndrome or Batten Disease. Most use a wheelchair and may also need other items of special equipment to help manage their posture and prevent deformity or aid mobility and communication. Others may appear ‘normal’ and be physically able, but have subtle yet highly significant problems with their learning and behaviour as a result of a brain injury.

3.2. Adequately meeting these children’s needs is unavoidably expensive and represents an enormous challenge to health, education and other statutory agencies. At the same time, improved medical interventions mean this population is growing.

4. The role of GPs and GP commissioning

4.1. We have deep concerns that GP consortia will not have the clinical or management expertise to adequately commission the specialist services required by children and young people with severe disabilities and complex health needs. These services are unavoidably expensive and even in the current system we have often faced great resistance by local PCTs to meeting such costs, particularly when decisions about services for a single child can distort the budget held by individual commissioners. We would expect these difficulties to be exacerbated under a system of GP commissioning. GP consortia will have even less commissioning expertise in complex cases than PCTs and will be even less able to cope with spikes in financial demand brought about by the incidence of very complex paediatric needs in their area. We fear this will not only lead to children being denied access to vital services, but also pose a threat to highly specialist, national services such as our ours.

4.2. Many of the children we see at The Children’s Trust have very unusual conditions. Statistically the average GP is unlikely to see a child with one of these particular conditions in an entire career, so to put the commissioning of services for all these children into the hands of GP consortia would present them with quite unfamiliar challenges. Professor Sir Ian Kennedy’s recent report [1] has already criticised the lack of general paediatrics training that GPs receive. This is particularly true for disabled children, where GPs are sometimes not involved in care and treatment at all. A child with a serious disability will be in the hands of a community paediatrician or a paediatric neurologist and other specialists either from birth or from the moment they are discharged from hospital after acquiring a disability through an accident or illness.

4.3. There is a risk that these children will miss out on vital services unless the responsibility for commissioning these services is clearly and decisively put on a national or regional footing. Pooling resources and concentrating commissioning expertise is the most effective way of ensuring that low-incidence, high-cost needs are met. The new NHS Commissioning Board (NHSCB) represents a powerful mechanism by which this can happen. While the Bill already places responsibility for commissioning the specialist services identified in the National Definitions Set on the NHSCB, the Bill must also make explicit provision for the NHSCB’s powers to include specialist services for children with low-incidence, high cost needs (Section 11, subsection 3B).

5. Integrated working

5.1. It is vital that statutory agencies adopt a holistic approach to disabled children and work closely together to meet their needs. The creation of Health and Wellbeing Boards is a welcome development with the potential to deliver better outcomes for children and families and in many cases deliver significant savings to the taxpayer. However the Bill in its current form only requires Health and Wellbeing Boards to "encourage" the involvement of providers of "health-related services" (Section 179, subsection 3). This is not enough. For disabled children in particular, the definition of "health-related" provision encompasses a broad group of agencies.

5.2. For example, children and young people with a ‘hidden’ acquired brain injury are a group with much to gain from better integrated working that involves education. There are many children who appear to make a good physical recovery after suffering a brain injury and are discharged home with little follow-up support. Yet the ongoing, invisible deficits they experience in areas such as communication, behaviour and attention as a result of their brain injury can lead to poor outcomes in education, possibly exclusion and the risk of becoming involved in the justice system. Their needs cannot be easily categorised and can call on funds from many agencies, including education, health, mental health and youth justice. With the right support and a co-ordinated approach from statutory agencies, the difficulties these young people face can be significantly mitigated.

5.3. The need for an integrated approach is also illustrated by the difficulties we often experience in attempting to discharge children home from our residential services. We have frequently come across situations where child and family are ready to move home but are unable to do so because of inflexibility in the rules or other difficulties in arranging financial support for their housing. Arguments between local government departments about funding housing adaptations, which might cost a five figure sum, can cause the PCT’s costs for keeping a child in residential care longer than necessary to mount up to six figures. Meanwhile a specialist bed is blocked until the child is able to move on. These delays, which can cause misery for families and waste public money, are an outrage.

5.4. In order to offer disabled children and young people a truly joined-up approach, the involvement of education, housing and other agencies cannot be left to the discretion of Health and Wellbeing Boards. The Bill should therefore mandate the involvement of these providers through amendments to Section 178, subsection 2 and/or Section 179, subsections 3-6.

February 2011

[1] Getting it right for children and young people : Overcoming cultural barriers in the NHS so as to meet their needs, Professor Sir Ian Kennedy, Crown Copyright 2010