Select Committee on Health Written Evidence

25. Evidence submitted by the Disability Rights Commission (PPI 137)


  1.1  The DRC submits the memorandum following the Committee's publication of the terms of reference for its inquiry into patient and public involvement in health services.

  1.2  There are 10 million disabled people in Great Britain with rights under the Disability Discrimination Act including people with physical and sensory impairments, mental health problems, learning disabilities and long-term health conditions such as cancer and HIV/AIDS. But the Department of Health white paper "Our Health, Our Care, Our Say" reported in 2006 that not all disabled people have their needs met well by health services. We used our powers under the DRC Act to undertake a formal investigation into primary health services for people with learning disabilities and/or mental health problems which reported in September 2006 ("Equal Treatment: Closing the Gap") that health services were not meeting the requirements of the DDA with regards to these two groups of disabled people in particular.

  1.3  We believe that through the better inclusion of disabled people in patient and public involvement schemes, health services could better plan for and meet the needs of disabled citizens. "Nothing about us without us" is a mantra which may be familiar and explains itself, but without adequate inclusion of "experts by experience" services will not understand or meet the needs of all users.

  1.4  We submit this memo as an expression of interest in providing fuller information if required by the Committee. As such, we have not answered all questions or gone into comprehensive detail on each question the terms of reference proposed.

2.   What is the purpose of patient and public involvement?

  2.1  The DRC believes that patient and public involvement should focus on service improvement. We have provided guidance on the inclusion of disabled people in the delivery of Disability Equality Schemes that many public authorities (including NHS Trusts) were expected to produce by December 2006.[14] Evidence shows that health services do not currently meet disabled people's needs. This must improve and Disability Equality Schemes are one means to achieve this requiring disabled people's continued involvement. This could benefit patient and public involvement schemes and health services more generally.

3.   What form of patient and public involvement is desirable, practical and offers good value for money?

  3.1  The DRC supports effective involvement—ie that which has clear structure and purpose for involvement and can deliver improvements to health services for all citizens.

  3.2  There are various schemes to involve disabled people and other citizens in local service improvements; the Department of Health in England has a commitment in "Improving the Life Chances of Disabled People" (2005) to provide a local Centre for Independent Living in every local authority by 2010 for example. A coherent joining-up of such schemes could offer better value for money.

4.   Why are existing systems for patient and public involvement being reformed after only 3 years?

  4.1  The DRC supports better systems for delivering real improvements for service users and their families.

  4.2  Existing systems have not provided the improvement in services disabled citizens require. We hope that new systems will better facilitate disabled people's involvement. This is particularly important as our discussions with the Department of Health have revealed that disabled people form one in five of the working age population but one in three health service users. Over-representation as service users is not reflected in involvement schemes which have not secured improvements to services that disabled people require.

5.   How should LINks be designed, including:

    —  Remit and level of independence.

    —  Membership and appointments.

    —  Funding and support.

    —  Areas of focus.

    —  Statutory powers.

    —  Relations with local health Trusts.

    —  National coordination.

  5.1  The DRC believes independent LINks with representatives of local disabled people and their organisations with adequate funding and stipulated areas of work are desirable to drive service improvements and assist services in meeting legal requirements of the Disability Discrimination Act (DDA) 1995 as amended in 2005.

6.   How should LINks relate to and avoid overlap with:

    —  Local Authority structures including Overview and Scrutiny Committees.

    —  Foundation Trust boards and Members Councils.

    —  Inspectorates including the Healthcare Commission.

    —  Formal and informal complaints procedures.

  6.1  The DRC believes that appropriate networking between LINks and local authorities will deliver better results. This will be especially appropriate following plans to introduce the joint commissioning of health and social services as outlined in the "Our Health, Our Care, Our Say" white paper last year.

  6.2  We also think co-ordination between national inspectorates, complaints procedures and LINks could ensure that involvement is not tokenistic but designed to deliver real improvements with "expert" citizens and service users understanding the full range of health service responsibilities and functions.

Neil Coyle

Disabiliy Rights Commission

January 2007

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