115. Evidence submitted by Mike Cox (PPI
21)
Introduction
I am a National Health Service user with a long
standing (30 years) involvement in service user and carer involvement.
Since 1999 that has taken an increased focus on the development
patient and public involvement in health and since December 2003,
specifically on Patient and Public Involvement Forums, the statutory
replacement for Community Health Councils.
Since resigning my PPI forum membership in February
2004, disability discrimination being the last CPPIH straw for
me, I have done my best to function as an independent watchdog
for the constructive development of PPI. In 2005, I set up my
own website to further this function (PPEyes) but this was closed
down in the Autumn of 2005 by the intervention of CPPIH appointed
lawyers who alleged defamation (there is legal precedent that
a public body cannot do this). The details of this and the evidence
of CPPIH incompetence and equivocality is in the accompanying
html dossier. [71]
I have in the past, also, via my constituency
MP, Richard Bacon, and direct reference, been in touch with the
Health Committee about these issues and I did submit a paper Recommendations
on PPI reorganisation to Meredith Vivian in August 2004, some
of which remains relevant to you and which I have also included.
[72]
There seems to have been a surprising absence
of organised service user led research in this sphere, particularly
since service users and carers have battled to get their voices
heard as credible, legitimate and truly independent—free
from attempts at interference and influence by professionals and
free from attempts to manage, control and direct by corporate
interests. That movement should be synonymous with Patient and
Public Involvement in the NHS.
The term `service user' is preferred to `patient'
because the term `patient' has, over the years, gathered role
expectations which include subservience, passiveness, helplessness
and ignorant—someone who has things done to and for them
with no involvement of their own. `Service user' is one who uses
services with a right to choose and provide their own input, in
an equal partnership with the professional/clinician as an expert
on themselves and their own circumstances.
PPI Forums with their statutory identity and
powers established by the National Health Service Reform and Health
Care Professions Act 2002 along with section 11 of the Health
and Social Care Act 2001 should then offer huge benefits for the
development of real service user and carer independence of thought,
voice and action.
What is the purpose of patient and public involvement?
1. "... in recent years, the needs,
views and rights of NHS patients have rapidly ascended the political
agenda, with the Government announcing in 2000 their "vision"
of "a health service designed around the patient". While
measures to improve access, convenience and quality of care for
NHS patients form the mainstay of government policy, there have
also been significant developments in terms of securing direct
patient input into NHS services, and providing enhanced support
to patients negotiating the NHS system ... The role of PPIFs is
to influence the day to day management of health services by the
Trust, and to monitor the effectiveness of the PALS and ICAS in
their area—be the main vehicle for the public to influence
strategic priorities and day-to-day management of health services
in their local area; be an independent critical friend on wider
health matters in their community such as environmental health;
review services from the patient perspective and monitor responses
from local health services to complaints from patients."
(Patient and Public Involvement in Health, Health Committee, 7th
report, Session 2002-03).
2. "It is important to recognise that,
for too long, decision making in the national health service has
been behind closed doors and that all too often it has resembled
a secret society rather than a public service. We have to open
it up to all sections of society because the national health service
does not serve just one part of the community; it serves the whole
community and we must have a means of decision making that properly
reflects all interest groups ... The Bill strengthens the patients'
voice inside the NHS. The CHCs had no role in primary care; patients
forums will have that role. The CHCs were refused the right to
inspect GPs' premises; patients forums will have that right. The
CHCs were partly appointed by the Secretary of State for Health;
patients forums will all be appointed independently of both the
Secretary of State and indeed the NHS. The CHCs had no formal
rights of representation within NHS organisations; patients forums
will elect, as of right, one of their members to sit on every
trust board. This is about not diminishing patients' rights in
the health service, but increasing patients' rights in the health
service" (Alan Milburn, Commons Hansard 2001).
3. In my opinion, the concept of PPI as
outlined above is positive. It has been the execution of the purpose
which has been dysfunctional.
What form of patient and public involvement is
desirable, practical and offers good value or money?
4. It is clear that the structure of PPI
should be democratic, service user led and run and "bottom-up".
It is a fundamental and very expensive mistake to try to impose
top-down governance via corporate management structures.
5. True independence is a basic requirement.
For example, many PALS bodies only function partially because
they are part of the trust organisation itself and are subject
to both formal and insidious pressures to conform to the needs
of the organisation.
6. It is obvious that the use of volunteers
offers good value for money. However, it is essential that volunteers
are afforded full respect and full rights. I would say the resignation
of 2,248 volunteers from PPIFs by October 2005 was a reflection
of the CPPIH's regular mistreatment of its volunteers.
7. Finance should be arranged through a
separate independent financial trust. Funding through local authorities
means PPI having to conform to requirements written into contracts
which could conflict with the objects of PPI—subtle "gagging"
clauses for example. Funding provided to local authorities by
central government for PPI will, unless ring-fenced, proportionately
disappear into other budgets. The same applies to NHS bodies.
8. Standards in Public Life should apply
throughout PPI.
9. Public accountability must have clear,
known channels and solid remedies. For example, it has been impossible
to hold CPPIH to account for maladministration: (a) referring
unresolved complaints to the "parent body" (DH and Rosie
Winterton) as advised by both the Office of the Parliamentary
and Health Service Ombudsman and the Office of Standards in Public
Life has just resulted in the complaint being passed back to CPPIH
to deal with; (b) referral to the Parliamentary Ombudsman has
just brought a response that complaints cannot be dealt with because
matters to do with CPPIH volunteers are judged to be "personnel
matters" which, by law, cannot be dealt with by the Ombudsman.
10. There is nothing wrong with the existing
PPI Forums if they are organised in these ways, indeed, the stronger
examples have set some standards which could be built on despite
CPPIH maladministration. Why waste money and throw away this hard
earned fundamental learning?
Recommendations
11. The body or partnership responsible
for the governance of PPIFs should employ, or engage volunteer
service users and carers as experts in their own right to oversee
PPI, at every level, on an equal footing with all employed staff.
12. The body responsible for the oversight
of PPI should be accountable to a Parliamentary Select Committee
with a facility for direct referrals to that Committee by service
users, carers and other members of the public.
13. There should be a change in the law
to enable complaints by volunteers about PPI to be accepted by
the Parliamentary and Health Service Ombudsman and not thrown
out because they are "personnel matters" as is currently
the case.
14. All personnel responsible for the governance
of PPI should be brought under the remit of the Standards Board.
15. Any PPI organisation should have a clear
and accessible whistleblowing policy with readily available links
to whistleblowing bodies such as Public Concern at Work and Freedom
to Care (Freedom to Care's code on accountability should also
be considered).
16. Volunteers should be brought under the
ambit of the Public Interest Disclosure Act 1998.
17. Any internal complaints procedure should
be carefully revised to simplify it and obviate possible misuses
of power. An independent agency (eg the Healthcare Commission)
should monitor second stage complaints.
18. Volunteers should be afforded the same
protections as those in employment law and have the same rights
as employees to have matters heard by an Employment Tribunal.
Why are existing systems for patient and public
involvement being reformed after three years?
19. The concept of PPI as outlined above
and as in "Strengthening Accountability" is good. The
installation and implementation by a top-down civil service management
bureaucracy which ignored the 30 years' plus expertise of service
user organisations and individuals has been disastrous. We must
learn our lessons from this.
Recommendation
20. CPPIH should be immediately removed
from the re-organisation process and this should be conducted
by a federation of service users and carers.
How should LINks be designed, including remit
and level of independence
21. PPI Forums should remain, with
their current remit, at the core with three completely independent
clusters: local voluntary organisations; PALS; and ICAS. LINks
should be flexibly organised and responsible for their own local
bottom-up planning, development and operational functions. Flexibility
is essential to take account of the huge differences between metropolitan,
urban and rural conditions. Rural policies must be "Rural
Proofed".
22. PALS has to be fully independent as
the first line casework body—employment by NHS trusts inevitably
potentially creates divided loyalties with most being resolved
on the side of the body which pays the wages. There must be tight
communication and operational LINks between PALS and Forums.
23. See also 5.
Recommendations
24. Process and meetings should ensure at
least equal access to those living in rural areas. Positive discrimination
in favour of those living in rural areas may be appropriate and
required in some instances. All policies and procedures should
be "Rural Proofed" as a matter of urgency.
25. Where trusts cover large geographical
areas a core and cluster approach should be adopted. There should
be full local exploration of alternative means of attachment,
ie "patient journeys".
26. There should be avoidance of a position
in which one person can dominate the team to pursue their own
agenda.
27. See also 30.
Membership and appointments
Recommendations
28. Recruitment should be managed by a partnership
between a National Federation of Service Users and the PPI Centre
for Excellence.
29. Recruitment of volunteers should comply
with the Investing in Volunteers Standard. Investing in Volunteers
is being managed by the four development agencies of the UK Volunteering
Forum: Volunteering England, Volunteer Development Scotland, Volunteer
Development Agency in Northern Ireland, and Wales Council for
Voluntary Action.
30. In the interests of real PPIF independence
and a minimisation of vested interests and conflicts of interests,
the regulations should be revised to exclude any person with a
continuing NHS or Social Services or other corporate commitment
whether employed or not. There should also be a requirement for
members to be publicly open and transparent.
31. The regulations should link to a freely
and publicly available PPIF Code of Practice. There should be
a review of the current membership with these changes in mind.
that review should include and examination if paragraph (3) (a)
of the Membership and Procedure Regulations 2003 is being observed.
32. The parameters and regulations related
to welfare benefits should be reviewed to minimise deterrents
for service users' and carers' full involvement in PPI.
33. Recruitment and appointment procedures
should record an assessment of prior experience and an assessment
of prior learning for each member.
34. Recruitment and appointment processes
should involve service users and carers.
35. The new governing body should, from
the earliest date, individually engage existing forum members
in an appraisal of present skills, knowledge, abilities and experience
towards an assessment of immediate training needs.
36. The above appraisal process should be
part of the recruitment and appointment of new members and should
be conducted by the PPI Centre for Excellence.
37. Essential training needs should be met
at the point of the appointment of forum members and there should
be a secondary rolling programme of training which is regularly
reviewed in partnership with the above organisations.
38. Education and training should be competent
and rigourous continuous processes and not something tacked on
as internal amateur activities by management and administrative
staff.
39. All training and education processes
should involve service users and carers.
Funding and support
Recommendations
40. In their 2001 document "Making
it Work Together"; the Scottish Executive in the Section
headed "Ideas on how to ensure independence"; said:
"Keep funding at arms length by considering setting up an
advocacy trust for your area—by pooling funding from different
sources so no one agency holds the significant funding responsibility..."
That concept should be adapted to LINks.
41. Support should be provided by the Centre
for PPI Excellence (knowledge, guidance, advice) and an integral
part of LINks providing administrative facilitation on the lines
of the proven FSOs. Those FSOs which have proved to be dysfunctional
(eg those who have imposed management decisions on Forums) should
be excluded.
42. New organisations or groups used for
PPIF facilitation should, wherever possible, be service user and
carer run. They should take account of the special needs of rural
areas.
43. See also 7.
Areas of focus
44. Foci and priorities will differ according
to the local needs, circumstances and social structures. They
should be determined bottom-up by the LINks themselves.
45. A special concern is that recent NHS
re-organisation has created vast PCTs covering thousands of square
miles (ie Norfolk PCT). Particular attention should be paid to
the problems of how the "local" element in LINks can
relate to these new leviathan like bodies, especially the planning
and delivery of mental health and learning difficulties provision
in primary care.
Recommendations
46. The building of LINks should start from
local community/neighbourhood level, and the term "local"
should be defined as such.
47. Consideration should be given to developing
small "portfolio" groups (eg mental health, HIV/aids,
learning difficulties, drugs and alcohol) as PPI clusters in areas
where one PCT covers a large geographical area.
Statutory powers
48. No change.
Relations with local health trusts
Recommendation
There should be two PPIF service user places
on each NHS trust board.
National coordination
Recommendation
50. A National Federation of Service Users
should be established to oversee PPI and advocate for volunteer
rights. This should include existing Service user run organisations
such as Shaping Our Lives, Together and MIND.
How should LINks relate to and avoid overlap with:
Local Authority structures including Overview
and Scrutiny Committees
51. PPIF relations with OSCs are already
good in some places. That should be enhanced by measures to ensure
closer working between LAs and NHS being introduced elsewhere.
The formation of LINks should further strengthen relations.
52. The questions being asked are around
how effective examination by OSCs is proving—where does
it go from there in terms of addressing serious issues. As shown
in the Health Committee interview with Rosie Winterton last year,
referrals to her department appear to get lost in the in-tray.
Recommendation
53. The legal powers of OSCs should be strengthened
and shortened.
Foundation Trusts boards and Members Councils
54. As in 49.
Inspectorates including the Healthcare Commission
55. See 17.
Formal and informal complaints procedures
6. 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?
Recommendations
56. One model for consideration should be
local high street shop front premises for each PPIF with administrative
and secretarial support on hand. This will maximise truly local
involvement.
57. Activities should focus on processes
rather than events. Reaching out to consult service users, carers
and members of the public, especially those who are disaffected
and those who have communication difficulties, should be a priority.
Making decisions and taking actions based on forum members' opinions,
however well informed, should be discouraged. There should be
a focus on "evidence based" processes.
58. There should be a positive "reach-out"
policy as the primary activity of PPIFs and some elements of LINks.
Other agencies (ie drugs and alcohol services, Learning and Skills
Department projects) have developed good practices here and PPI
can learn from these. For example, small two person "surgeries"
in libraries, gp premises, hospitals, village halls, local pubs
etc.
59. PPIFs should be encouraged NOT to organise
themselves as formal business committees. A "team" approach
operating on more "organic" lines would seem more appropriate
with team members taking on overlapping roles: ie liaison, local
contact, advocacy, public speaker, etc.
60. Norfolk County Council has published
excellent disability guidelines for making public consultation
possible "Accessibility Matters": PPI should use these.
Mike Cox
PPEyes
2 January 2007
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