Select Committee on Health Written Evidence

80. Evidence submitted by the Patients Forum (PPI 92)


  1.1  The Patients Forum is an independent network that exists to promote the sharing of ideas, experiences, and information to enable our members to better inform and influence policy developments. We work to improve communication and consultation by engaging with policy developments in a timely way, and by supporting connections between our members and other key stakeholders.

  1.2  Our current membership comprises 46 voluntary, citizen and consumer health organisations (full members) and 12 statutory, professional, and academic organisations (associate members).

  1.3  We hold six scheduled meetings each year to provide members with the opportunity to come together, exchange information, and to debate new policy developments. In addition, we hold a number of seminars each year on specific issues that our members feel warrant more detailed discussion. We produce a newsletter six times a year to help to facilitate the sharing of information among members, and to identify and highlight key policy developments from a patient, carer and citizen perspective. Patients Forum conferences have been well attended in recent years, with delegates drawn from a wide range of patient, carer and consumer health groups, and statutory and professional bodies.

  1.4  In the past, The Patients Forum has also conducted more detailed work on specific areas of interest to our members, for example in commissioning research to examine patient involvement in the development of National Service Frameworks, and work in collaboration with the College of Health and the Long-Term Medical Conditions Alliance on behalf of the Department of Health on the development of a national patient body which contributed to the development of the Government's patient and public involvement strategy. Patient and public involvement in the NHS has been an issue of ongoing interest to our members.


  2.1  The Patients Forum is not a campaigning organisation. We support, rather than represent, our member organisations and provide a neutral and constructive forum for learning, exchange and debate. This memorandum therefore does not represent the consensus view of our members, but rather is presented as what we hope will be a helpful contribution to the debate.

  2.2  Below, we provide some brief thoughts and reflections in response to the questions that the Committee has posed.

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

  3.1  The goal of patient and public involvement in health should be to give service users, carers and citizens a greater stake in the NHS and in the broader components of health that extend beyond the confines of the NHS. It should seek to provide a mechanism for "non professional" perspectives to be expressed, and should increase the accountability of health care to the local community, and to citizens as a whole. In addition, patient and public involvement can also be seen to have a significant role in improving the quality of health care services and support.

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

  4.1  To be effective, patient and public involvement in health must be able to reach (a) excluded groups, and (b) those who are not currently in direct contact with health care services. Both groups represent a significant challenge for patient and public involvement.

  4.2  People who are described as "hard to reach" often fail to get involved in the current structures for patient and public involvement. Creating new structures and mechanisms for involvement that, for instance, requires attendance at meetings or participation on a committee, seems to do little to reach out to these excluded groups.

  4.3  Excluded groups frequently require more support and assistance to have their voices heard. For example, one of our member organisations, Sign, the national society for mental health and deafness, has been running a project, funded by the Department of Health, to help deaf and hard of hearing people to get appointed to PPI Forums As part of this project Sign provided training to enable potential deaf PPI Forum members to feel that they could make a contribution and indeed should become a PPI forum member. Once appointed the project supports them to become effective. They believe that more support is needed to enable these deaf PPI members to continue to make a contribution and to assist in disseminating the lessons from their experiences. Frequently deaf PPIF members encountered no budgets for interpreters and limited understanding in the Forum Support Organisations of what was required, such as booking communication support for meetings. Ongoing project evaluation has shown that the presence of deaf, hard of hearing and other disabled members on PPIFs has helped to raise the issue of deaf/disability awareness in these structures and highlighted the need for reasonable adjustments to be made so to open up the forums to everybody.

  4.4  The second group of people—those not currently in direct contact with health care services—also pose a challenge for patient and public involvement. These people may not feel that they have anything to contribute to health care in their community, or may not even see health care as an issue of concern to them at all. It is therefore important for whatever mechanisms are put in place to take steps to reach out to the wider community and to proactively seek to engage people.

  4.5  There is also a question over whether it is better to organise patient and public involvement around localities, or around organisations. Some of our members are concerned that the arrangements for the election of governors for Foundation Trusts, for instance, fail to provide a system that is representative of the local community, while purporting to be a more accountable and democratic system than elsewhere in the NHS. Membership of Foundation Trusts is low, resulting in a small, unrepresentative "electorate" which lacks proper accountability to the wider community. Community based mechanisms for patient and public involvement in health therefore appear to be a more attractive option.

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

  5.1  Patients Forum members have been monitoring the development of the Government's patient and public involvement policy over several years. Some believe that the system put in to place under the 2001 legislation failed because of the lack of effective support mechanisms provided to individuals at a local level, and the wide variation in the effectiveness of individual PPI Forums. The lack of adequate investment in patient and public involvement meant that the existing systems were always going to struggle to provide what was expected of them.

  5.2  Furthermore, the lack of an effective national voice for patients meant that issues and concerns at a local level had no easy way of being passed up for escalation if needed. This is an essential component of effective patient and public involvement.

  5.3  In recent months, The Patients Forum has been working closely with other stakeholders in the voluntary and community sector to explore what sort of "national voice" for patients, service users, carers and the public is needed. This work has been driven by a desire to increase the effectiveness of the patient and citizen voice in the policy making process. Baroness Morgan of Drefelin has been chairing a working group made up of voluntary and community sector organisations to explore how there could be a more systematic approach to involving patients, service users and the public in policy development. That group has been working to agree the principles that should underpin the development of an independent national voice for service users, patients and carers to influence policy across health and social care, and to investigate options to establish a mechanism that represents that independent national voice. In the past few months, the group has been testing a proposition with the wider voluntary and community sector to refine the proposal that it has been developing.

  5.4  Although the work of this group is being driven by the voluntary sector itself, and is entirely independent of government, we hope that the Department of Health will be supportive of the proposal as it develops, particularly as the proposal will be based on what organisations working with or representing patients, carers, service users and citizens recognise is needed at a national level.

6.   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.

  6.1  Some of our members are concerned about the prospect of local variability in the new system. Where there are few community development organisations in a locality, there is only a limited prospect for a meaningful LINks to emerge. While it is vital for LINks to retain their independence, it is also vital for the voluntary sector locally to be properly funded and supported in order to support the development of LINks. The Government will also need to address the potential conflict of interest brought about by the likelihood that some voluntary sector organisations that are providing services under contract to the NHS or local councils would also be eligible for membership of LINks.

  6.2  In terms of national coordination, it is essential for individual LINks to have a mechanism by which issues can be coordinated regionally and, if necessary, escalated to a national level. It is also important for there to be a mechanism that allows the priorities and concerns of local LINks to be examined nationally to provide policy and decision makers at a national level with the insight of local service delivery from a patient, service user and citizen perspective. There will also be a need to consider what sort of national standards for LINks will be necessary to maintain an adequate quality of participation in all areas.

  6.3  As mentioned above, the Patients Forum has also been working with other stakeholders to explore what sort of "national voice" is needed to more effectively reflect the patient perspective in to national policy making. This is an issue that we feel is in need of much greater exploration, and we would encourage the Committee to explore this issue in greater detail.

7.   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.

  7.1  Some of our members have expressed a view that the Government's map of patient and public involvement mechanisms is becoming increasingly complex and difficult to understand. It is obviously important that LINks are able to work effectively with the other components of the Government's patient and public involvement system. However, it is important for the Government to be clear about the roles and responsibilities of each component, and particularly the expectations that they will have of local citizens in those processes. Thought will also need to be given how specialist commissioning arrangements can be opened up to patient and public involvement and made more transparent.

8.   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?

  8.1  Consultation needs to take place at the earliest opportunity, and before any decisions have been taken locally. It is still too often the case that communities are presented with a fait accompli, and the NHS simply uses inadequate consultation mechanisms to effectively rubber-stamp a decision that has effectively already been taken.

  8.2  In undertaking wider public consultation, it is important to ensure that the formal mechanisms for participation (such as LINKs, or Foundation Trust membership) are not seen as substitutes for real and effective engagement. Formal mechanisms provide an important conduit to the wider community, but are themselves not sufficient. In undertaking wider public consultation, these mechanisms should be harnessed to reach out to the wider community. Real engagement costs money and time, and the NHS must be prepared to invest in consultation to ensure that the widest possible range of stakeholders are reached.

Unnati Rennie

The Patients Forum

January 2007

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