25. Evidence submitted by the Disability
Rights Commission (PPI 137)
1. INTRODUCTION
AND OVERVIEW
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.
— Relations with local health Trusts.
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
14 http://www.drc.org.uk/employers_and_service_provider/disability_equality_duty/meeting_the_duty/involving_disabled_people.aspx Back
| 
