Select Committee on Health Written Evidence

60. Evidence submitted by the Moore Adamson Craig Partnership (PPI 39)


  Our evidence concentrates on the form a LINks should take and stresses the importance in PPI work of building organisations around the volunteers and not trying to fit the people into structures. The memorandum argues for and outlines the principal provisions of a new form of contract between the LINks and the individuals who come forward to serve on the body.


  The M-A-C Partners Valerie Moore, Colin Adamson and Andrew Craig have worked with patient and user representatives for the past five years and were pioneers in training for this role in partnership with the National Consumer Council. We have also evaluated the success of aspects of PPI programmes and been involved in other health-related initiatives such as Governors in Foundation Trusts. Our approach also draws our experience with other consumer representative organisations in the water and rail industries.

M.A.C aims and approach

  To enable user representatives and those who manage and support them in their efforts to develop a coherent and effective approach to their work. We help them:

    —    Define "representation"/"representative".

    —    Identify issues and concerns of those represented.

    —    Identify strengths and weaknesses of their organisations or as individuals.

    —    Formulate goals and objectives.

    —    To evaluate their efforts and to recognise success.


  We believe it is very important to make the new PPI systems and processes work well this time round. In the past few years we have seen growing cynicism and in some cases real anger amongst those individuals who have given time and energy to Community Health Councils (CHCs) and Patient and Public Involvement Forums (PPIFs). In many cases this is matched by a weariness amongst even the most forward-looking service providers and commissioners who feel their organisations and their patients and the public have gained little from the shift from CHCs to Patient Forums. Some complain that their work with the public has been hampered and weakened, partly by repeated structural changes but more importantly by the alienation and subsequent disappearance of individuals and organisations with whom they previously had positive working relationships.


  The risks of getting it wrong this time are therefore very high. It is not only a question of making good use of public funds. It is also a question of resuscitating good will and developing positive new relationships. Our work over the past five years in the patient and public involvement field has shown us that the public in general and patients in particular are passionately committed to the idea of a publicly provided health service. They are strongly supportive of their local healthcare institutions at every level and the people who work within them. They want to be involved, but only in things which they see as being relevant to them. Where they have something to say they want to be listened to. They know they are really being listened to when they can see that their feedback has had an impact on the things that matter to them.


  It is essential that the new LINks bodies are and are seen to be independent of providers and commissioners of services. But they will also need to help their members (whether individuals or organisations) to have the capacity, knowledge and skills to secure real influence. Many of the failures of Public and Patient Involvement Forums were related to inadequate support both in terms of administration and in terms of expert guidance. We would hope that LINks might end up looking not dissimilar to the very best of the old CHCs with an expert and professional staff supporting the membership.


  We feel there is an opportunity for a radical new approach in this contractual area that starts not with the definition of the appropriate institutional relationships but with creating the space and the environment that will nurture and sustain the individual relationships.

  As our initial remarks make clear, the people that suffered from the uncertainties and failures of the past were principally the volunteers, those members of the public, patients and carers who took part and responded to invitations to join in. (This is not to ignore the untimely job losses of CHC staff but their status as employed people ensured that they were not left wholly stranded.)


  We therefore see the first priority to create the right conditions or contract to re-inspire, attract and retain the new corps of patient and public participants to resuscitate that goodwill and develop those new relationships.

  This person-centred LINks contract would address the following issues:

    —    A right of audience and to be heard and involved.

    —    Financial and other barriers to involvement.

    —    The availability of incentives including payment.

    —    The amount of training to be given to fulfil the role and to use all modern means of communication and association to do so.

    —    Full technical support in modern communication channels especially low cost communications.

    —    The availability of professional support at the times it is needed—eg weekend and evenings as well as daytime—a 0900 to 2100h day.

    —    Support to include access to research studies and the funds and training to commission their own work.

    —    The ethical and moral basis for the work and a code of expected conduct to be observed by all parties to the contract.

    —    The basis for appraisal—how often and by whom and to what end?

    —    The degree of protection from legal action eg libel.

    —    Accurate statement of the minimum/maximum time to be devoted to this work and the length of any engagement.

    —    A means whereby volunteers can negotiate different terms of engagement and of reference to suit their (changed).

    —    To have the power either to dismiss other contractors and service providers or vary their contracts if they not delivering the service demanded.

    —    The power to move the closure of the LINks if they are not performing and to allow others to bring such a motion so a fresh start can be made. We are not creating institutions that will last for ever - we are creating means to ends which if they do not deliver, we can close down and try something else.

  If a organisation tendering to set up a LINks shows that it can devise a contract along these lines that can be incorporated into the `main' host organisation contract and budget, then it is a serious contender to run a LINk regardless of whether it is a for-profit or not-for-profit organisation.

Valerie Moore, Colin Adamson, Andrew Craig

The Moore Adamson Craig Partnership

5 January 2007

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