Select Committee on Health Written Evidence

111. Evidence submitted by Judy Birch (PPI 101)

  I am submitting the following comments in my role as a patient and patient representative who has been involved in working in an independent, voluntary capacity for several years at local, national and international levels.I have attended and spoken at many medical conferences both in the UK and abroad and also in the UK and European Parliament. I have been a member of the local PCT PPI forum since forums were established in 2003 and have recently established a charity for an area of medicine where there has been little patient representation.

1.  Remit and Level of Independence

  It is essential that patient involvement is independent of the NHS and that the power of entry to inspect NHS premises is retained by a number of forum/Links members who have undergone CRB checks.

  Health Scrutiny Committeees comprised of councillors are not independent. Representation on OSC's of one forum/Links member will have no effect/benefit.

  If there is to be closer working between forums/LINKs and OSC's, there needs to be a greater balance in the number of lay/independent representatives from Links.

2.  Membership and Appointments

  It would be beneficial for the forum support organization to explain the role and functions of the forum/Links to prospective members. This should then be followed by an opportunity to meet and discuss how they would best fit into the forum with the existing members.

  Currently FSO's are meeting with NHS staff and discussing forum business without the knowledge or input of the forum. This is not the purpose or the idea of patient involvement. Again it is others taking over and acting on behalf of patients and the public which is not true representation.

3.  Funding and Support

  Funding needs to be sufficient to support the activities of the forum. The support should be independent (not sure that this is the case at present) Links should have the funding and resources to carry out wider consultation/research.

4.  Areas of Focus

  Less common conditions need greater attention with a focus on quality of life issues rather than disease specific. There is a great deal of inequality in this respect with some diseases gaining unprecedented attention at the expense of other equally deserving but less glamourous conditions.

5.  Statutory Powers

  It is important that forums/Links have the powers to obtain information in the public domain. There have been cases where this information is public but PCT/Trusts have not wanted to disclose it. It is also important that they can monitor and inspect premises. See paragraph 1.

6.  Relations with Local Health Trusts

  There have been many instances of good relations developed with local trusts and much greater communication than prior to the existence of forums. This should be encouraged and maintained.

7.  National Coordination

  This has currently been coordinated by the CPPIH. There have been examples where forums were not aware of CPPIH involvement such as the latters support for the APPG on Patient and Public Involvement. Any system must be transparent and welcome PPI input and involvement in a meaningful way.

8.  How Should Links Relate To and Avoid Overlap With:

OSC's—please see paragraph 1

  Foundation trust boards—these are also not independent, there should however be communication between them and Links.

Healthcare Commission—Links should have input into the work of the HC commission

  Fomal and informal complaints procedures. Links do not deal with individual complaints but PALS is not independent and patients frequently report difficulties with the non-independent nature of the latter.

General matters relating to PPI

  Currently patient representation at national medical conferences organized by the Royal Colleges, hospitals and organizations such as NICE, the NHS Alliance is severely restricted either by the non-existence of a cateogy of attendance for patient representatives or by prohibitively expensive rates amounting to several hundred pounds for one or two days attendance. This is hardly encouraging participation and involvement from those who have an interest and a duty to represent patients on a voluntary basis. There should be a requirement to provide a concessionary category of attendance for relevant patient representatives at such events that is affordable and substantially lower than the attendance fees for PCT Chief execs and others who have their costs covered by their employers. In many European countries the latter is the norm and such events are open to patients as well as patient representatives at a very nominal, affordable fee. Such involvement would generate a greater interest in independent health research and involvement by patients and the public.

Judy Birch

January 2007

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