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Patient and public involvement describes a wide range of activities and has a variety of purposes. Patient involvement and public involvement are distinct and are achieved in different ways. The conflation of these distinct terms and the confusion about the purpose of involvement has led to muddled initiatives and uncertainty about what should be done to achieve effective patient and public involvement. Nevertheless, patient and public involvement has the potential to play a key role in both NHS and Social Care services by bringing about service improvement and improving public confidence. Given the lack of local accountability in the NHS, often referred to as the 'democratic deficit', there remains a role for independent patient and public involvement structures.
The first formal structures to represent the public's interest in the NHS were Community Health Councils (CHCs), which were in created in 1974. CHCs were in place for almost 30 years, but in recent years there has been a flurry of changes. CHCs were abolished at the end of 2003. Their role was taken over by a number of organisations, including Overview and Scrutiny Committees (OSCs—the remit of which was extended to cover healthcare), Patient Advice and Liaison Service (PALS), Independent Complaints Advocacy Service (ICAS) and Patient and Public Involvement Forums (PPIfs). PPIfs were supported by the Commission for Patient and Public Involvement in Health (CPPIH). Our predecessor Committee warned at the time of the consequences of these changes. In July 2004, less than six months after PPIfs had begun operating, the Department announced the abolition of CPPIH. At the time it said that PPIfs would remain, but. in July 2006 the abolition of PPIfs was also announced. They are to be replaced by Local Involvement Networks (LINks). No precise date has yet been set for the abolition of PPIfs or CPPIH.
The Department argued that LINks would provide better value for money and be better able to take into account the changing nature of the NHS, such as the increasing role of the private sector. The other reasons given for the abolition of PPIfs are the same as those given when CHCs were abolished: there is a wide variation in performance and they are not representative of the community, failing to attract young people and ethnic minorities. We are not convinced that PPIfs should be abolished. We do not see why PPIfs could not have been allowed to evolve. The abolition of PPIfs seems to have been driven by the need to abolish CPPIH rather than a real need to start again. Merging the existing PPIfs to form LINks would have been much less disruptive for volunteers and would have reduced the risk of significant numbers of them leaving. As most Forum Support Organisations already support several forums they could have been allowed to evolve into Hosts, keeping their experienced staff. Once again the Department has embarked on structural reform with inadequate consideration of the disruption it causes.
The Local Government and Public Involvement in Health Bill establishes LINks. It sets out the main remit, rights and duties of the organisation, but provides very little detail. Most of this is to be set out in regulations once the Bill has received Royal Assent, although the Department did send the Committee a number of draft consultation documents. Worryingly, a number of projects known as 'early adopters', which seek explore how LINks would operate, were established in December 2006, after the Bill was introduced, implying that the establishment of LINks was not an evidence-based decision.
The Department's concept of LINks seems to have changed. It looks as if the model was originally for a network which would act as little more than a conduit to enable health service organisations to contact a wide range of communities. Subsequently, the Department's concept for LINks has taken the form of a 'PPIf plus model', which would involve volunteers undertaking a similar range of activities to those done by PPIfs.
There was widespread concern about the proposals to set up LINKs. It is unclear how far they are to be similar to PPIfs, how far a more nebulous network. Witnesses feared that the Department could end up with the worst elements of both models. There is a real danger that LINks will end up trying to do too much, that there will be confusion about what they should do and that volunteers will be lost as a result.
In addition, a number of outstanding issues are unresolved. At present, LINKs are not accountable; for example, it is unclear who would call a dysfunctional LINk to account. The organisations which will provide LINks with support are to be known as Hosts. The Government intends to permit a large number of organisations to undertake the role of a Host, including voluntary sector organisations which provide social care; this could create a conflict of interest since the organisations would be providing as well as scrutinising social care services.
While we do not believe that it was necessary to abolish PPIfs and establish LINKs and while we have concerns about the Department's proposals, we consider that LINks could be effective. We make a number of recommendations to improve their effectiveness. The Department should:
- Clarify what LINks should do and ensure they prioritise. LINKs will have neither the funds nor the number of volunteers to do all that the Minister suggested they might like to do. The Department is keen not to be prescriptive; it is right not to specify how LINks should work, but must issue guidance about what they should do. This guidance should be tailored to what is achievable within their budget and should encourage LINks not to duplicate work, including research, done by other organisations
- Ensure that the 'early adopter' projects operate with 1) a Host organisation to see how this works in practice and 2) the same budget that a LINk will have to see what can be achieved with these funds
- Clarify how LINKs will be made accountable
- Clarify how conflicts of interest arising from social care providers acting as Hosts are to be resolved
- Take steps to ensure that existing volunteers are not lost in the transition from PPIfs to LINks since there are a limited number of people prepared to make a substantial commitment to patient and public involvement and many of those are members of PPIfs.
Section 11 of the Health and Social Care Act 2001 provides for extensive public consultation and involvement in the case of changes to services. Its accompanying guidance, entitled Strengthening Accountability gives good advice on how NHS bodies should go about consulting and involving the public. In theory an excellent system is in place. However, in practice there is much disquiet: people feel that they are consulted after decisions have been made. There has also been criticism of NHS organisations' refusal to consult about major changes and of the Department of Health vigorous support of these decisions. The Bill proposes changes to Section 11 consultation.
We fear that the Bill will weaken Section 11. The change of definition it proposes may lead to confusion and could lead to more court cases when the Act is tested. We are not convinced that this change is needed. We conclude that there is no need to change the law or the guidance, which is sufficient. The problem lies with the NHS organisations, often under pressure from deficits.
The Department should encourage NHS bodies to undertake consultation in accordance with Section 11 and the associated guidance. When undertaking consultations all NHS bodies must follow the best practice that already exists in parts of the NHS; in particular, they must be clear about what can and cannot be changed, ensure that they consult early enough in the process that plans can be changed and recognise that even the best designed and run consultation will not result in public agreement. Consultations in which a large proportion of the public reject plans which go ahead anyway must not continue to happen.
A major problem with large consultations has been the readiness of the Secretary of State to intervene, often after a full consultation has been undertaken. This is threatening to undermine public confidence in the consultation process. We recommend that she refer all cases to the Independent Reconfiguration Panel before intervening.
Throughout the inquiry we heard that what matters is not patient and public involvement structures but effective involvement of patients and the public. Structures and procedures, whether LINks, CHCs, PPIfs or Section 11, will have little effect if the heath service is not prepared to listen and make changes as a result of what they learn. Indeed the existence of separate structures for patient and public involvement has tended to reinforce the NHS' tokenistic approach. Effective patient and public involvement is about changing outcomes, about the NHS and social care providers putting patients and the public at the heart of what they do.
Many NHS and social care organisations have done patient and public involvement well. The existence of good practice shows that there is no reason why the NHS and social care providers cannot all effectively involve patients and the public.
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