Select Committee on Health Written Evidence

134. Evidence submitted by Jean Nunn-Price (PPI 139)

  I joined the SW Oxfordshire PPI PCT Forum in December 2003 and subsequently was elected Chair of the Forum prior to its being subsumed in Oxfordshire PCT PPI Forum in October 2006. My experience includes working voluntarily both with PPI Forum colleagues and with the PCT Board, and conducting surveys of public, patients and voluntary organisations locally to draw out their concerns and represent them to the PCT.

  I attended the SHA Conference on Tuesday 9 January and I broadly agree with their evidence to the Committee. The evidence that follows draws upon the SHA evidence to which I and colleagues contributed. I would be happy to give oral evidence if required.

What is the purpose of patient and public involvement?

  Health Services that involve patients and the public in planning future provision and that welcome and respond to feedback on current provision, are more likely to get it right. I believe democratic accountability is important, and so is real empowerment of the community in challenging the organisation providing health services, whether government owned, a voluntary organisation, or a co-operative and mutual enterprise. The commissioner and provider of health services need to know that they will be challenged effectively by the public who are on the receiving end. It is now accepted that people need to be positively and actively involved with their own health and this means there should be opportunities for both collective and individual involvement.

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

  Much more effective publicity needs to be given to the PPI role, so that everyone, including disadvantaged sections of the community, can participate. PPI volunteers must be properly resourced to relate to people with sensory or language difficulties, people with dementia and those confined to their home or to an institution. I welcome the proposal that the new LINks will work with voluntary organisations, as they are more likely to have developed the right contacts and techniques for two-way communications with the hard-to-reach sections of the community. But no one voluntary organisation should be given the power to manage a LINk, as they have their own vested interests and cannot be seen as independent.

  It would be helpful if the Government could clearly define what it wants the system of PPI to deliver. Without this there is no means to judge if the system has succeeded or failed. Once established, if there could be a planned independent review of the new system in five years time against pre-agreed outputs, it should have had an opportunity to prove itself.

  Where PPI Forums have worked well, it makes sense to build the new LINks on them, including their means of administrative support. When Forums were first set up after CHCs were abolished, there was a steep learning curve for PPI members. By building on the strong Forums some of the problems of the early days of PPI could be avoided. A measure of organisational stability is important where there are so many volunteers involved. It takes a great deal of time and effort by lay individuals to begin to understand the NHS. It is particularly important for the PPI organisations to have a collective memory given the transient nature of many health organisations and this is largely provided by the employment of professional support staff.

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

  I agree with the SHA who say it's because Ministers like to give the impression they are doing something, and because it is now clear that the abolition of English Community Health Councils was an expensive mistake.

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.

  The remit of LINks should extend beyond health to its wider determinants, as well as health and social care. It should be able to drill down to where the decisions are made, including being involved with the Practice-based Commissioning process.

  If LINks are not perceived to be independent they will have no credibility. Under the present proposals the most obvious threat to their independence is their relationship with the sponsoring local authority, which will be responsible for managing the contract under which the support staff are to be employed. It is therefore important that the process of managing the contract is protected from political interference by establishing a transparent process and a fixed timetable—eg contracts should normally last for five years with perhaps a mid-term review, and any change should be agreed by the LINk, and not just by the local authority. As an additional safeguard, the contract should not be awarded to any existing group which enjoys major funding from the local authority concerned.

  The concept of membership of a LINk needs to be defined, given that there are to be both individuals and organisations in membership. I hope that all lay people who have any sort of representative role in the arrangement of health or social care services in their area would automatically be a member of their local LINk. The Department of Health envisages a LINk as a network. It might be necessary to define a core membership in order to permit democratic decision making. I agree that there should be a requirement that every person who participates in the work of a LINk to be normally resident in the area of that LINk (although of course the work of a LINk may lead to investigation of services provided for their residents by organisations many miles away). I should also like to see a one-member-one-vote system for a LINk, whether the member is an individual or an organisation.

  I think that membership should be entirely voluntary and self selecting as with Forums. This would mean that the collective voice of a LINk would have more weight than the voices of the individual members if it could demonstrate wider involvement, particularly of disadvantaged groups. The response of a LINk to consultation will be based on the experience and knowledge of its members. However, there will never be sufficient resources to involve the wider public and the most disadvantaged people in every consultation. When LINks make official responses they should be required to state what processes informed the production of that response.

  Many voluntary organisations will have financial interests in the provision of services in their area and it is important that these interests are declared and that these interests do not contaminate the voices of voluntary organisations representing their communities. Under previous legislation NHS employees and contractors were not allowed to be members of CHCs or Patient Forums. If such a prohibition is to continue then it should probably extend to any person with a financial interest in the provision of health or social care services in the area of the LINk. If the prohibition is abandoned (and even if it's not) there will need to be a mechanism to register the declaration of interests. It will be very important that LINks adhere to the Seven Principles of Public Life established by the Nolan Committee and it will be necessary to ensure that there is some mechanism for dealing with complaints about this. There may be lessons to be learnt from the experience of the Standards Board for England.

  LINks will need support from professional staff with experience in community development and of how the NHS and social care work. The staff will also need good IT skills. LINks need to be able to call upon skills training for its volunteer members to help them perform their PPI roles. It might be helpful for one organisation to support several LINks, perhaps calling on specialist organisations to deal with particular aspects of the work over a wide area. There needs to be organisational stability and a career structure if highly skilled staff are to move into this work. The staff should be accountable to the LINks whose members should be involved in any appointments.

  I agree that funding should be directly related to population and not weighted for deprivation, rurality or any other factor. If there is a national budget of say £25 million for the population of England that works out as approximately 50 pence per head per year. Such a simple formula would make it easy to see whether the money is reaching its intended destination. If specific funding provision is made for particular sorts of deprivation or activity then this should be provided separately. Providers or commissioners should be allowed to pay LINks to conduct specific consultations or other projects on their behalf just as they often pay freelance consultants now, although the independence of the LINK should not be compromised. As an example, in our SW Oxfordshire Forum, we co-operated with the PCT in conducting "patient experience" and "food quality" surveys of patients in intermediate care after they had done their own survey, as an independent check (without payment).

  LINks should have some statutory powers over and above the powers available to the public in general. In particular each LINk should have access to the detailed terms of any contract for the provision of health and care services to people in its area. Commercial confidentiality can be safeguarded by a provision making commercially sensitive information subject to confidentiality for a limited period. Nominated LINk representatives should have rights of access to health providers premises just as Forums do now.

  If a national and regional organisation structure is set up to support LINks, then they must be answerable to the local LINks, and not the other way around. Members of LINks need to be enabled and encouraged to communicate with each other across the country so that specific wider issues can be addressed.

How should LINks relate to and avoid overlap with:

Local Authority structures including Overview and Scrutiny Committees

  Overview and Scrutiny Committees' effectiveness in relation to health varies very widely according to local political and geographical circumstances. I agree that there is potential for LINks and Scrutiny Committees to work together constructively, as we do in Oxfordshire. However in some local authorities the Scrutiny Committee is incapable of providing an effective challenge to service provision of indifferent quality. In such cases the LINks will need extra support.

Foundation Trust boards and Members Councils

  As yet the impact of the democratic arrangements for Foundation Hospitals is difficult to assess. There is clearly potential for using those mechanisms to improve consultation and involvement of patients with hospitals and this may be useful for the relatively small number of people whose care is delivered primarily by a hospital. I hope that Members Councils would relate to their local LINk. However, I agree that the central political problem in health is the excessive political power and visibility of hospitals, particularly acute hospitals, as opposed to the invisibility of primary and community services.

Inspectorates including the Healthcare Commission

  The efforts the Healthcare Commission and CSCI have made to date to involve patients in inspection arrangements are very encouraging and merit further development. The Commission could be a powerful ally in the development of involvement and it would be good if this role were strengthened. LINks should be recognised as working alongside the professionals in providing lay members for formal visits and inspections.

Formal and informal complaints procedures

  The separation of complaints work from the work of Patient Forums has been a source of weakness as compared to the regime of the best CHCs where complaints contributed to a detailed picture of the performance of local health services. I understand that there are concerns about the confidentiality of complaints procedures but some mechanism must be devised to ensure that local LINks (or possibly some designated committee of a LINk operating on a confidential basis) have access to information about complaints which is sufficiently detailed to enable LINks to know which specific services give rise to complaints. There may also be a role for LINks to protect patients who complain as there are still widespread allegations of victimisation.

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?

  The proposed amendments to what is now section 242 of the National Health Service Act 2006 appear to envisage much more general consultation than has previously been required, and that is welcomed. I agree that decisions about the arrangements for consultation under section 242 should be made locally in conjunction with the local LINk which could take into account a wide range of factors, including the capacity of local communities to respond and the relative significance of various proposals. Consultation, to be effective, needs to take place much earlier—while the consideration of possible options is taking place. Those involved in their local LINk should not be surprised by the announcement of any proposal for substantial changes of service in their local area because they will have been involved at an early stage.

Jean Nunn-Price

January 2007

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