1 Introduction
1. There is a long history of patient and public
involvement in healthcare.
Probably the longest-lasting
patient involvement initiative anywhere in the world concerns
the 'Guinea Pigs'. This was a group of disfigured servicemen,
mainly air-forcemen, formed towards the end of World War II by
Sir Archie McIndoe, the pioneering plastic surgeon. Sir Archie
provided them with support not only during the highly complex
individualised surgery which helped them to heal, but also in
their reintegration into civil society—in this case the
street, shops, and pubs of East Grinstead where McIndoe worked
at the Queen Victoria Hospital. The 'Guinea Pigs' still meet and
celebrate their achievements.[1]
Examples such as this show that involving patients in their treatment
can do a great deal of good. Similarly, the public has been involved
in the decisions made by the NHS for many years and has brought
about many improvements.
2. However, although the potential benefits of involving
the public and patients are considerable, the reality of patient
and public involvement can be more disappointing. In practice
the recent structures, currently Public and Patient Involvement
forums (PPIfs), and before 2003 Community Health Councils (CHCs),
have sometimes been effective, but sadly frequently ineffective.
3. There is much confusion. There is a lack of clarity
about scope and purpose. Should patient and public involvement
be about more accountability, better services or health promotion?
A plethora of organisations are concerned with patient and public
involvement and the number of organisations has been increasing.
In 2003 Community Health Councils were abolished. Their place
was taken by PPIfs, PALs and ICAS. The remit of Local Authority
Overview and Scrutiny Committees, which were set up in 2001, was
subsequently extended to cover health care. Foundation trusts,
which were established in 2004, have Boards of Governors to engage
the public and patients. Inevitably, these organisations, particularly
the forums and the Boards of Governors, are in danger of duplicating
each others work.
4. This Committee has had a long interest in patient
and the public involvement. We last reported on the subject in
2003 when CHCs were abolished. In that inquiry we identified the
problems associated with then reforms—the replacement of
Community Health Councils by PPIfs and the creation of the new
foundation trusts—and called for greater clarification in
order "to avoid further confusion and uncertainty for patients
and NHS staff".[2]
The Committee warned about the problems that would be associated
with the replacement of the old system".[3]
Now, just over three years after they were established, PPIfs
are to be abolished and replaced by Local Involvement Networks
(LINks)
5. A key aspect of public involvement is the duty
which was placed by Section 11 of the Health and Social Care Act
2001 on Primary Care Trusts and NHS Trusts and Strategic Health
Authorities to make arrangements to involve and consult patients
and the public. This is of considerable importance at a time of
deficits and when there is a great deal of pressure for reconfiguration.
The Government plans to make changes to this legislation.
6. Once the Local Government and Public Involvement
in Health Bill which is to enact the Government's proposals was
announced in the Queen's Speech, the Committee decided to hold
an inquiry with the following terms of reference:
- What is the purpose of patient
and public involvement?
- What form of patient and public involvement is
desirable, practical and offers good value for money?
- Why are existing systems for patient and public
involvement being reformed after only 3 years?
- 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
How should LINks relate to and avoid overlap with:
- Local Authority structures
including Overview and Scrutiny Committees
- Foundation trust Boards of Governors
- Inspectorates including the Healthcare Commission
- Formal and informal complaints procedures
In what circumstances should wider public consultation
(including under Section 11 of the Health and Social Care Act
2001) be carried out and what form should this take?
7. Our report is intended to inform the House's consideration
of the report stage of the Bill, but it goes wider than that.
We investigate the system established in 2003/04 and also reflect
on more fundamental problems, including:
- What does patient and public
involvement mean?
- How to ensure that patient and public structures,
such as PPIfs, are representative: for instance, maximum involvement
or a smaller more focused group which may be better at holding
the NHS to account
- How to ensure that the NHS takes patient and
public involvement seriously
- Funding: what can be achieved with the available
budget
- What central co-ordination is necessary.
8. We received over 170 written submissions and held
four oral evidence sessions. We visited Rochester to discuss patient
and public involvement in the Medway area. There we met people
from PPIfs, NHS bodies, local authorities, voluntary bodies and
those involved in the 'early adopter' project for LINks. We would
like to thank all who helped us in this inquiry, including our
advisers, Laura Hilder and Professor Bob Sang, who provided us
with valuable advice and assistance.
9. This report begins by considering the overall
aims of patient and public involvement. It then describes the
recent history of patient and public involvement, examining the
changes already made in the last five years before considering
the arguments for further reform. Next the Government's proposals
for change are examined, in particular the establishment of LINks.
We consider witnesses' concerns about the proposals and make recommendations
to improve the effectiveness of LINks. The report then looks at
major consultations, including the Secretary of State's interventions
in such consultations, and the Government's proposals to amend
Section 11 of the Health and Social Care Act 2001. Finally, we
state our general conclusions, stressing the key importance of
the NHS in ensuring that patient and public involvement is effective.
1 E.R. Mayhew, The Reconstruction of Warriors: Archibald
McIndoe, the Royal Air Force and the Guinea Pig Club, 2005
Back
2
Health Committee, Seventh Report of Session 2002-3, Patient
and Public Involvement in the NHS, para 28 Back
3
Ibid., para 34 Back
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