Select Committee on Health Written Evidence

129. Evidence submitted by Robert Jones (PPI 18)

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

  To involve the public in an understanding of the way in which services work in society and to contribute to refining them; to bring public concerns, ambitions and ideas to the attention of those who run the services and to have a realistic chance of influencing them.

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

  Perhaps the best model might be derived from looking at what government has done since 2003, and avoiding the mistakes it made. This is more than a satirical point: the creation of the CPPIH and numerous forums was a bureaucratic nightmare and nonsense. Government had so little confidence in the ability of those it recruited to the Forums that it policed them with one of the most pettifogging and unpopular quangos that I have ever known. It sacked the dedicated, professional staff to which CHCs had enjoyed access, and replaced them with bidders from the voluntary sector—a system which worked well in some areas, disastrously in others, owing to the widespread differences in the quality of voluntary sector staff and the professional standards available there.

  A new system should:

    (i)  have professional staff to work with the new bodies which will be created;

    (ii)  have dedicated office space;

    (iii)  have the ability to follow through projects and, ideally, complaints—or at the very least to receive anonymised data from complaints procedures; and

    (iv)  have statutory powers that are adequate but not excessively bureaucratic.

  As to whether this will mean "good value for money", there is no point in having a system of patient and public involvement if these conditions do not obtain. If the government is serious about it, therefore, the above are the minimum standards to which its new system should adhere.

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

  Because the system brought in under the legislation creating forums and CPPIH was inadequate and misconceived, arising as it did from the decision to scrap CHCs without due thought or, crucially, consultation about what would replace them. The argument put forward by ministers that the system is changing because the NHS has changed cuts no ice with forum members, and lacks all credibility.

4.   How should LINks be designed, etc?

    (i)  Remit and level of independence: If the LINks are introduced, they should aim to maintain the "critical friend" approach towards the NHS that has worked reasonably well. They should be separate from the NHS, and the Local authorities in whose areas they work. They should have a scrutinising role, and they should seek to involve user groups and individuals, as well as marginalised elements in society. There needs to be a sense of realism however about their capacity to achieve the latter: "hard to reach" groups may be hard to reach because they do not want to be reached. It will take more time than volunteers are likely to have to corral the unwilling into participating in health decision-making.

    (ii)  Membership and appointments: There needs to be a core board, if LINks are to be open organisations, or scarcely organisations at all, involving a wide range of bodies and people. Appointments to that board should preferably be made by elected councillors or at least at as local a level as possible.

    (iii)  Funding must be adequate for the purpose; must be ring-fenced; and support should be given by professional, competent managers recruited and trained for the purpose. The voluntary sector does not have sufficient professionally competent people within it to provide the level of service required. Members of Forums are unlikely to tolerate a repeat of the organised chaos that has bedevilled their work over the last three years, and yet the new system requires the expertise they have acquired.

    (iv)  Areas of focus: These will vary locally and regionally, but if the LINks are to be based on local authority areas, ie, principal authority areas, they should relate to and with the NHS, social services and housing services and organisations in their LA area. They should also be encouraged to relate with LINks outside of their areas, to share experiences and concerns.

    (v)  Statutory Powers: At least a group within the LINks should have the statutory powers to visit NHS institutions and premises supplying NHS services. Local authorities, Trust Boards, and Foundation Trusts should be obliged to consult with LINks and to include them on key decision-making bodies.

    (vi)  Relations with local Health Trusts: LINks should expect to be consulted as of right in the work of the local Trusts and to have representation on Trust Boards and main committees. Trusts should be made aware that "consultation" requires more than having a representative on a board, however, to nod through change or add credibility to its decisions.

    (vii)  There should be a national organisation to which LINks affiliate, and this needs to be adequately funded. What it does not need to be is a controlling mechanism for the LINks, or—in short—similar to the CPPIH. It should act as a clearing house for ideas and a forum for discussion, and might be constructed along similar lines to ACHCEW, or the National Housing Federation. It will need to be controlled by its members so that it does not run the risk of following the example of the latter and gradually acquiring more powers and roles for itself.

5.   How should LINks relate to and avoid over lap with

    (i)  LA structures including Overview and Scrutiny Committees: There is no evidence that the Forums have fallen into the overlapping trap, and no reason why the LINks should do so. An informal relationship should be established between LINks and OSCs, so that representation may be locally agreed; but it should be mandatory for the OSC to appoint/accept LINks representatives, and probably vice versa.

    (ii)  Foundation Trust Boards and Members' Councils: A formal relationship should be established at the appropriate local level; this should not be rigidly prescribed, but there must be an understanding that representation is mandatory. Again, overlap is unlikely to be a problem given there is sufficient legislative framework to establish the responsibilities of the LINk.

    (iii)  Inspectorates including the Healthcare Commission: Overlap is hardly likely to be a problem here; as to relationships, the Healthcare Commission has an impressive record of involving Forums in its activities, and most Forum members are very happy to work with it. We will hope that its work and approach continues, and that through negotiation and trial, a relationship will be formed with LINks that will mirror the successful one that has been formed with Forums.

    (iv)  Formal and informal complaints procedures: Since in my experience ICAS and PALS have been wholly ineffective, and are extremely bad at conveying useful information to Forums, it would be my hope that they should be abolished. I realise the government has already indicated that they will continue. I can only say that I regret this, and believe that the CHC role of investigating and seeing complaints through, complementing internal NHS systems and occasionally challenging them, was the right way, and I deplore the retreat from it. I believe that relations between LINks and the complaints systems are going to be extremely poor when members of LINks realise how frail the system of complaints has become and that the government will face further challenges on this front in the course of time.

    (v)  In what circumstances should wider public consultation (including Section 11 of the H&SC Act 2001) be carried out, and what form should this take? If the LINks are to have anything like the scope envisaged for them, they could be the main consultee body. Given that the majority of people will never be interested or able to be involved in them, however, the system which presently exists to enable consultation ought to be maintained, provided that it is extended to cover nationally determined changes in service provision as well as more local decisions.

Roberet Jones [comments are made as as individual]

Vice Chairman, Isle of Wight PPI Forum

3 January 2007

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