Health and Social Care Bill

Memorandum submitted by the Participation Works Partnership (HS26)

1. This submission has been prepared by the Children’s Rights Alliance for England on behalf of Participation Works, a partnership of six national children and young people’s agencies that are working together to ensure that all children and young people are given information, opportunities and appropriate assistance to participate in decision-making that affects them, as individuals and collectively. Our membership includes the British Youth Council, the Children’s Rights Alliance for England, the National Children’s Bureau, the National Council for Voluntary Youth Services, the National Youth Agency and Save the Children. Participation Works has a comprehensive programme of activity and resources on participation which include workshops, training sessions and practitioner networks, designed to support organisations and practitioners who work with children and young people under 25 years old.


2. This submission focuses on ways in which the Health and Social Care Bill could be strengthened to ensure children and young people's involvement in health decision-making.

3. The Bill proposes several new (and replacement) mechanisms by which the public will be informed about, and engaged in, health decision-making. However, as it currently stands, there is no particular provision for children and young people.

4. The Participation Works Partnership strongly welcomed the coalition Government's promise in December 2010 that it would give due consideration to the Convention on the Rights of the Child (CRC) when making new law and policy. Further, this is the first legislative opportunity Parliamentarians have had to respond to the findings of the Kennedy Review, ‘Getting it right for children and young people: Overcoming cultural barriers in the NHS’, published in September 2010.

Convention on the Rights of the Child

5. As a signatory to the CRC, the UK must take all possible steps to fully realise the rights and freedoms in the Convention, including Article 12 which requires that:

States Parties shall assure to the child who is capable of forming his or her own views the right to express those views freely in all matters affecting the child, the views of the child being given due weight in accordance with the age and maturity of the child.

For this purpose, the child shall in particular be provided the opportunity to be heard in any judicial and administrative proceedings affecting the child, either directly, or through a representative or an appropriate body, in a manner consistent with the procedural rules of national law.

6. The international monitoring body for the CRC, the UN Committee on the Rights of the Child, has been clear that Article 12 applies to collective decision-making processes, as well as matters affecting the individual child. In its General Comment on Article 12, the Committee notes:

… wide interpretation of matters affecting the child and children helps to include children in the social processes of their community and society. Thus, States parties should carefully listen to children’s views wherever their perspective can enhance the quality of solutions. [1]

7. In October 2008, the UN Committee issued its concluding observations on the UK and, in relation to Article 12, urged the Government to widely ‘promote, facilitate and implement, in legislation as well as in practice, … the principle of respect for the views of the child [and] support forums for children’s participation [our emphasis]’. [2]

Kennedy Review

8. In 2009/10, Professor Sir Ian Kennedy carried out a review of how the NHS delivers tochildren and young people and recommended a Local Partnership in each local authoritythat would co-ordinate public services in the best interests of children and young people. His ambition was that: ‘the welfare and well-being of children and young people, seen as so important by so many, will be the prevailing cultural approach. Then, once the needs of the children and young people for whom it is responsible are identified, the Local Partnership must ensure that they are provided for in an efficient and effective manner’. Children and young people's views and experiences were to be at the heart of these Local Partnerships:

… By being wholly focused on the concerns of children and young people, the Partnership can ensure that their voices are heard as priorities are determined. Indeed, it would be an advantage to take a further step by seeking to ensure that there is some mechanism to enable the Local Partnership, in its structure, to be broadly representative of the community served ... In particular, the Local Partnership should be required to devise and operate mechanisms through which children and young people’s voices can be heard and appropriately acted upon [our emphasis] . [3]

9. The coalition Government did not support Local Partnerships dedicated to the best interests of children and young people, though it did accept Professor Sir Ian Kennedy's powerful arguments about engaging children and young people in the NHS. The Government's response explained:

In the past, the NHS was not always set up to put the needs of patients and the public first. Too often patients were expected to fit around services rather than services around patients. Nowhere was this more the case than for children, young people and their families … If we are to meet the needs of children, young people, families and carers, it is vital that we listen to them in designing services, gather information on their experiences and priorities, provide them with the accessible information that they need to make choices about their care, and involve them in decision making
[our emphasis]. [4]

Other evidence

10. A recent review of law, policy and practice in relation to children and young people's participation in the NHS and other public services and settings found that:

· In their efforts to support user involvement, health authorities and NHS Trusts have not specifically identified children and young people as service users

· There is no evidence of children and young people being systematically served by Local Involvement Networks (LINks)

· Although 41% of GP practices are reported to have a Patient Participation Group, there is no evidence of children and young people’s active engagement in these forums. [5]

11. Amendments to the following Clauses would make a significant difference to children and young people's status and profile within the NHS. They would help ensure the views and experiences of children and young people are firmly in mind from the very beginning:

· General duties of the NHS Commissioning Board (Clause 19)

· General duties of commissioning consortia (Clause 22)

· Provision of independent mental health advocates (Clause 35)

· Secretary of State's annual report (Clause 44)

· General duties of Monitor (Clause 52)

· Designation of services (Clause 69)

· NHS Foundation Trust membership (Clause 138)

· Panel for advising governors (Clause 147)

· Healthwatch England (Clause 166)

· Local Healthwatch organisations (Clause 167)

· Activities relating to local care services (Clause 168)

· Independent advocacy services (Clause 170)

· Local Healthwatch organisations annual reports (Clause 173)

· Health and Wellbeing Boards (Clause 178)

· General duties of Health and Social Care Information Centre (Clause 237).

12. We hope that Parliamentarians will consider amendments to these Clauses to ensure that the Bill genuinely delivers for children and young people.

February 2010

[1] United Nations Committee on the Rights of the Child (2009). General comment no. 12. The right of the child to be heard. Page 8.

[2] United Nations Committee on the Rights of the Child (October 2008) Concluding observations on the UK . Page 8.

[3] Professor Sir Ian Kennedy (September 2010). Getting it right for children and young people. Overcoming cultural barriers in the NHS so as to meet their needs. Page 57.

[4] Department of Health (September 2010). Achieving equity and excellence for children. How liberating the NHS will help us meet the needs of children and young people. Pages 4 and 6.

[5] Burke, T. (2010). Anyone listening? Evidence of children and young people's participation in England . Participation Works. Pages 39-46.