Health and Social Care Bill

Memorandum submitted by The National Children’s Bureau (NSB) (HSR 15)


NCB and the Every Disabled Child Matters campaign (EDCM) welcome the government’s efforts to improve its proposals for health service reform, particularly in relation to wider clinician engagement in commissioning and the integration of health, social care and health-related services. However, our concern that children and young people, including those with complex needs, are not at the heart of these reforms still remains. We urge members of the Public Bill Committee to secure assurances from government that it will:

· ensure that every commissioning consortium’s governing body includes a clinician with experience in providing care to children, including those with complex health needs

· ensure that all children and young people have a voice in the healthcare system, through both Healthwatch and commissioning consortia

· strengthen the Bill so that Health and Wellbeing Boards ‘must’ – rather than ‘may’ – encourage integration across health, social care and health-related services, which include education, early childhood and youth services.

Every commissioning consortia’s governing body must include a clinician with experience in providing care to children with complex health needs

Government is seeking to amend clause 21 of the Bill (inserting section 14JC) to provide for regulations which can prescribe the types of healthcare professionals that must be represented on the governing body of a commissioning consortium. Government has committed to ensuring that the governing body includes at least one nurse and one doctor who is a secondary care specialist.

NCB and its partners across the children’s sector have been calling for changes to the health reforms to ensure that health commissioners have a thorough understanding of children and young people’s needs. We were concerned that GPs do not always have the depth of experience and understanding of children’s healthcare needs, particularly for those with complex needs – such as disabled children and children in care. Our concerns reflect Sir Ian Kennedy’s review of children’s NHS services, which highlighted gaps in GPs’ paediatric training and experience.

"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" [1]

Children with more complex needs, including disabled children, will mostly be in contact with a paediatrician to assess their needs and coordinate their health care, rather than their GP. This often includes consultation on common ailments which are not related to their long-term conditions, meaning many GPs will have limited experience of the needs of such children.

The government’s proposed amendment is therefore welcome as it recognises the need to engage a range of clinicians in commissioning. However, we want to see this strengthened to guarantee that experts in child health are represented in every commissioning consortia’s governing body.

Can the Minister provide assurances that regulations will prescribe that the governing body of each commissioning consortia must include a clinician with experience in providing healthcare for children with complex needs?

Children and young people’s voices must be heard in the healthcare system

The NHS Futures Forum report made the case for measures enabling patient involvement and public accountability to explicitly include children: "there needs to be a voice for the 11.78 million children and young people who have no vote and cannot influence the democratic process" [2] .

In their response to the Futures Forum, government committed to amending the Bill to:

"add an explicit requirement that local HealthWatch membership is representative of different users, including carers"

Government has tabled a number of welcome amendments regarding patient involvement. However, membership of Healthwatch, and the representation of children’s views in particular, does not appear to have been addressed in the government’s initial amendments.

Currently, the level and quality of children’s engagement in the health sector varies considerably across the country. In particular, local involvement networks (LINks), which the Bill will transform into local Healthwatch, are not always clear that children and young people are part of their remit, and they struggle to develop the skills and access the tools needed to work with confidence with younger members of the public.

We therefore welcome government’s efforts to strengthen the Bill in relation to patient and public involvement. However, we believe a more explicit direction is needed to ensure that children and young people are not an afterthought in the development of Healthwatch and other mechanisms to promote service user engagement. The NHS Futures Forum report made the case for measures enabling patient involvement and public accountability to explicitly include children. We want this to be reflected in the Bill.

Can the minister clarify the government’s approach to ensuring that Healthwatch will be representative of different service users, and to making sure the voices of children and young people are heard?

Can the Minister provide assurances that statutory guidance on commissioning consortia’s duty to promote patient involvement will provide specific advice on involving children and young people, including groups that struggle to be heard (such as disabled children, children in care and children in the youth justice system).

Health and Wellbeing Boards must have a stronger role in integrating health, social care and health-related services for children and young people

Integrated planning and service delivery is particularly important for children and young people’s health. The most effective health promoting interventions for this age group are often those delivered through non-health settings, such as schools and colleges, Children’s Centres and youth services.

The NHS Futures Forum has made clear that there should be greater integration of services for children and young people – beyond just health and social care – especially for those with complex needs.

"We believe integration should cover… integration across health, public health, education, and social care…[T]here is a real opportunity to improve care by bringing together all the funding…for disabled children or those with child protection needs. This principle of ensuring care is joined up across health and social care and education reflects the vision of the Government’s Green Paper on children with special educational needs and disability currently out for consultation" [3] [own emphasis added]

Government has tabled a number of amendments [4] to give NHS commissioners a duty to exercise their functions with a view to securing integration across health, social care, and health-related services.

NCB and EDCM welcome these amendments. However, we are surprised that the provisions covering the role of Health and Wellbeing Boards in promoting integration have not been given equal strength. Currently, clause 192 (paragraphs 3 and 4) states that Health Wellbeing Boards ‘may’ – rather than ‘must’ – encourage integration across health, social care and health-related services. If Health and Wellbeing Boards are to work effectively in partnership with NHS commissioners and hold commissioners to account, their duties regarding integration must be aligned and consistent.

Will the minister clarify how the role of Health and Wellbeing Boards will support the government’s proposed integration duties for NHS commissioners, and how it can be ensured that integration covers the full range of health-related services for children, including education, early childhood and youth services?

About NCB

NCB’s mission is to advance the well-being of all children and young people across every aspect of their lives. As the leading national charity which supports children, young people and families, and those who work with them, across England and Northern Ireland, we focus on identifying and communicating high impact, community and family-centred solutions. We work with organisations from across the voluntary, statutory and private sectors through our membership scheme, and through the sector-led specialist networks and partnership programmes that operate under our charitable status.

NCB has a history of working to promote health improvement among children and young people and to enable them to influence the quality and choice of the health services they receive. As a Departm ent of Health strategic partner , NCB runs the Voluntary Sector Support (VSS) Programme for voluntary organisations providing health services to children and young people.

About Every Disabled Child Matters

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.

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

§ Contact a Family

§ Council for Disabled Children

§ Mencap

§ Special Education Consortium

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.

June 2011

[1] Sir Ian Kennedy ( 2010) Getting it right for children and young people: overcoming cultural barriers in the NHS so as to meet their needs. Pp45-46

[2] NHS Futures Forum (2011) Choice and Competition: Delivering Real Choice . p 34

[3] Ibid. p16

[4] Amendments to clauses 19 (inserting section 13J) and 22 (inserting section 14OC)

Prepared 11th July 2011