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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