52. Evidence submitted by the London Network
of NHS Patients' Forums
THE PURPOSE
OF PATIENT
AND PUBLIC
INVOLVEMENT
1. The purpose of patient and public involvement
is to give the views of patients and the public to the NHS at
every level from Government down to practices. Whilst every institution
in the NHS can give an individual view unified by its board or
Chief Executive, patients' views are diverse, even on the same
subject. For example, there is no one mode of birth which would
be chosen by all women or even by one woman on all occasions.
Yet there are professional tendencies towards simplicity, cost
efficiencies, experimentation or conservatism which may not be
readily reconciled with the patient's interest.
"PATIENTS"
AND "PUBLIC"
2. It is incidentally the case that we see
no clear distinction between patients and the public. Failed asylum
seekers are not patients in quite the same senses as others though
obviously they may become patients in reality. Private patients
are not public patients but may become so. Parliament named "Patients'
Forums" by Act of Parliament[36]
but it also named the "Commission for Patient & Public
Involvement in Health" in the same Act and that body prefers
to ignore the Act when describing Patients' Forums. It describes
them as "PPI Forums" (without expanding the abbreviation,
so obscuring its meaning to the public at large and even to some
forum members, for whom they have recently included the acronym
in a glossary). In any recommendation the Committee may make,
we trust that they will use the shortest and clearest descriptions.
DESIRABLE FORM
OF INVOLVEMENT
3. We are in no doubt that independent,
unpaid volunteers are the ideal source of patients' views but
this is sometimes difficult to achieve. The whole culture of the
country has changed since the days when all public service on
local councils was unpaid. There are fewer people willing to work
for nothing.
4. Yet we believe that the unpaid volunteer
has more to offer than some who are paid. The former Community
Health Councils (seemingly retained in part of the United Kingdom)
consisted predominantly of unpaid appointees of local councils
and unpaid (though sometimes paid) representatives of voluntary
organisations, very like the proposed LINks. We believe that paid
employees of voluntary organisations have too much vested interest
and should not be allowed to serve on LINks management committees
which they will often wish to address on behalf of their organisation.
There should also, of course, be public declarations of interest,
not merely financial interest. Nothing about this is as yet in
the Local Government and Public Involvement in Health Bill currently
before Parliament.
THE CASE
FOR REFORM
5. The Committee asks why further reform
is necessary only three years after Community Health Councils
were abolished. It is for the Committee, not us, to determine
why Ministers and civil servants decided to abolish Community
Health Councils in England. The absence of any original proposal
to replace them leads us to believe that the Government took the
view that any non-NHS view of the NHS was inconvenient, the view
of bureaucracies throughout the ages. We find the actions of the
Members of Parliament who forced an alternative form of patient
participation on the Government very praiseworthy.
6. Unfortunately, since the Community Health
Councils had been abolished, the Patients' Forums had to be set
up by someone. The Government chose to set up a new quango (quasi-autonomous
national government organisation) to do this. In our view this
was a considerable mistake since the quango, the Commission for
Patient and Public Involvement in Health (CPPIH), was itself bureaucratic
and not particularly competent. In its first year, it set up 10
offices for itself, employed over 100 staff and yet outsourced
its primary duties to various organisations contracted to itself
(not to the Patients' Forums some of them serve) under a contract
written without appropriate professional advice on behalf of the
taxpayers. It spent all its money and had little to spend on advertising
for members of forums or on forums directly by itself. Even then
it failed to present its accounts to the House of Commons in timely
fashion. Your Committee has already noted much of this.
7. The view of Patients' Forums, when they
came to exist, of the CPPIH was not favourable. Members were appointed
in an arbitrary way without consultation with existing forum members.
They simply appeared at meetings without any biography or advance
warning and, most importantly, their contact details could not
be circulated because the CPPIH had not obtained their consent.
CPPIH know the contact details, of course, giving rise to the
suspicion that they kept them secret to retain power in their
own hands.
8. Above all, members can be dropped from
forums in an equally arbitrary way. Even the Vice-Chair of a forum
could suddenly be excluded without the Chair or any other members
being informed by CPPIH. CPPIH habitually informs Forum Support
Organisations (FSOs) but not Forums, both of general and particular
matters. If Forum members (often professionally qualified in appropriate
disciplines) wished to ascertain whether their FSO was performing
under its contract, at least one FSO made allegations against
them to CPPIH which were followed by the dismissal of members
concerned. There is a system of appeal against dismissal (somewhat
revised since CPPIH began) but it has not always been followed.
9. In a well-known case, a member with qualifications
and experience which could not be successfully impugned by the
FSO was threatened with an action for defamation by an FSO which
was "legally" advised by a person who was not a qualified
lawyer. It should not be possible for a subordinate organisation
to legally threaten the volunteers it supposedly serves in this
way.
10. One of our members has kept a list of
persons dismissed from forums for doubtful reasons. She has noted
that when members are "acquitted" on a dismissal charge
the records of the false allegations against them are retained
by CPPIHin their records of the members concerned. This is for
a substantial period, said to be five years, ie longer than CPPIH
has been in existence.
11. We give the above history, not merely
because it was requested by the Committee in its terms of reference,
but as a guide for the future as to what to avoid. We fully support
the Government's decision to abolish CPPIH. It is worth noting
that, in all its unhappy history, CPPIH has never got around to
organising information so that every patient leaving an NHS or
publicly commissioned private facility is given a Patients' Forum
leaflet stating what such Forums are and what they do (if CPPIH
did do this, of course, it would be called a PPI Forum leaflet
to obscure the matter). Yet the Commission—which has power
to give "advice" to forums—never quite does this.
It prefers to give "guidance" and the impression that
the forums must follow its will. They must "have regard"
to CPPIH advice but that has been known to conflict with other
legal requirements when it clearly cannot be regarded as guidance
to be followed.
INDEPENDENCE OF
LINKS
12. We therefore believe that LINks (Local
Involvement Networks), to which we have no objection in principle,
must not be organised at the top, at national level, by another
appointed quango. There should be a national LINk partly elected
by regional LINks and partly representing voluntary organisations.
We find it incomprehensible that the Baroness Morgan should be
consulting voluntary organisations alone and not consulting Patients'
Forums as well. It should also be a requirement of the legislation
that Patients' Forums and all their members should participate
in the discussions on setting up LINks and have their membership
carried over into the LINk for their PCT area.
NATIONAL CONSULTATION
13. In general, a weakness of present Department
of Health consultation is that there is no consultation of Patients'
Forums. The Department has consulted CPPIH but this does not seep
through to forums. Other occasional consultees, such as the Patients'
Association, existed before Patients' Forums but Patients Forums
were neveradded to the consultation list when they were created
and have, as yet, no national organisation because CPPIH originally
saw such a creation as a rival.
14. Had there been national consultation
of Patients' Forums, it is possible that it might have been pointed
out to the Department that doctors' hours of work in a contract
should not necessarily be the same as a practice's hours of opening.
As it is, the first sign of the new doctor's contract to the public
was the shortening of practice opening hours.
REGIONAL LINKS
15. The Department seemingly agrees that
there should be regional LINks. London's Patients' Forum Network
already exists with meetings of all Forum members in the region
and a committee representing different types of trust forum and
different areas of London. Other regional forums should be brought
into existence as soon as possible, to combine with representatives
of voluntary organisations to form regional LINks.
16. Their prime responsibility would, of
course, be to relate to Strategic Health Authorities (SHAs) now
that the latter nearly conform to standard regions. Though we
do not understand why there are 10 SHAs covering the 9 standard
regions of England. We support the principle of SHAs conforming
to English standard regions.
FINANCE
17. The Government's proposals to pay local
authorities to contract with a host organisation to service a
LINk, seem to us to be cumbersome. Since local authority finance
should not be broken up into ring-fenced portions, we presume
that a minimum standard of service to the LINk will be specified
by central government. This needs to be more precise than specifications
given to CPPIH. We are fed up with having to sign annually accounts
(required by law) which contain no monetary figures whatsoever
because CPPIH does not give forums any money (giving them money
is not it seems required by law). The Government should specify
that each LINk should have an office in or near the principal
offices of the relevant local authority and at least one dedicated
staff person.
HOST ORGANISATION
18. The host organisation's nature is not,
as yet, specified. It needs to be disinterested. A host organisation
which is itself a voluntary organisation in the health field would
beregarded as biased by others. We could produce at least one
example of such a bias actually existing.
19. It should be required that in any dispute
between a host organisation and a forum it serves or a member
of that forum, there should be independent adjudication, in fairness
to both of them. "Independent" in this context should
mean independent of the forum, the host organisation or local
authority contracted to the host organisation.
20. We are not clear how host organisations
are to be chosen. If by each local authority separately, there
will be no economies of scale. This is what the Bill seems to
cover. Cooperation between authorities to employ the same host
cannot be guaranteed and may not always be desirable.
STATUTORY POWERS
OF LINKS
21. The statutory powers of LINks should
cover approximately those of Patients' Forums and the former Community
Health Councils. Confusion was caused by the initial proposed
omission of powers of "entry and inspection". Anyone
who has entered a busy London teaching hospital or even a busy
general practice during opening hours, realises that entry is
open and free. It is only in certain areas, eg a children's hospital
or ward of particularly vulnerable people inside a larger hospital,
that restrictions on entry are necessary.
These lead to Criminal Record Bureau checks
which delay appointments but there seems no reason why all Forum
or LINks' members need such checks, as a Government Minister,
Rosie Winterton, recently pointed out.
ENTRY AND
"INSPECTION"
22. The power of inspection caused even
more unnecessary fuss, seemingly because national organisations
with inspecting powers objected to others apparently having the
same powers. In fact, there is no real similarity between a group
of lay patients visiting a ward or other unit and, say, the Healthcare
Commission's professionals inspecting a whole trust. The Healthcare
Commission might, however, consider incorporating lay persons
in its inspection teams, as OFSTED and Primary Care Trusts do.
That Commission should always ensure, whenever it inspects a trust,
that the relevant Patients' Forum or LINk is consulted.
RELATIONS WITH
TRUSTS
23. Relations with local health trusts vary,
as is inevitable. With a few trusts it would be helpful to prescribe
that a LINk may appoint an observer at trust public board meetings,
who might speak at the chair's discretion. With good trusts this
is what happens already. In fact they invite their Patients' Forum
to send a representative to private meetings of sub- committees
and steering groups.
24. The relationship with Foundation Trusts
is subject to an odd technicality. If the trust deed specifies
the Patients' Forum related to the trust (which exists by law
anyway) should have a representative on the Members' Council,
it does. If the deed does not mention it, the Forum, as such,
is unrepresented. In either case there are directly elected patients'
representatives but no necessary relationship between them and
the Patients' Forum. This technicality should not be perpetuated
in the new LINks. The patients' representatives should continue
to be directly elected but one should be a LINk representative.
RELATIONSHIP WITH
HOST ORGANISATION
25. As we have pointed out in paragraphs
7-10 above, relations with FSOs, though usually good, have in
exceptional cases been poor. To avoid this in future it is necessary
that the relationship and communications between local authority
and host should be published as far as their LINk is concerned.
As stated in paragraph 19 above, there should be provision for
independent adjudication of disputes between LINk and host or
LINk and local authority.
RELATIONSHIPS WITH
OVERVIEW AND
SCRUTINY COMMITTEE
26. In general, Patients' Forums are dubious
about Overview and Scrutiny Committees (which in this context
are sometimes Health and Social Care Sub-Committees). There are
several reasons for this. The great majority of patients and the
public do not belong to any political party and are suspicious
of bodies which consist wholly of members of such parties. We
could cite examples where control of a local authority has changed
resulting in a change of attitudes to health scrutiny. At present
there is still a distinction between health (finally taken away
from local authorities over 30 years ago) and social care (still
a local authority function).
Finally, it would seem that some documents,
issued by the Government, confused the duties of local authorities
through an elected Mayor or a Cabinet, with those of a Scrutiny
Committee or Sub-Committee. The Scrutiny Committee should be required
to exercise the authority's existing power to coopt non-voting
members (from in this case the relevant LINKs)
RELATIONSHIP WITH
HEALTHCARE COMMISSION
27. The signatory of this evidence chairs
the Healthcare Commission's national forum reference group and
there are good relations between the two bodes. The reference
group contains two representatives of each of 9 English
regions' patients' forum members, appointed by CPPIH but in London
chosen by the regional network of forums, a practice which ought
to be required of all regional LINks, when they exist. One cannot
legislate for good relations, so relationships are best left to
such bodies, though we note that—at the time of writing—relationships
in social care are between local authorities and the relevant
inspectorate.
28. Unfortunately, other reference groups
either do not exist or are not as effective. For example, the
one with the General Medical Council began, had one or two meetings
and no more; it has never been formally ended but the GMC has
apparently ceased to consult it. The GMC will, of course, have
lay members but they are not necessarily connected to any Patients'
Forum or LINk.
29. We trust this answers the questions
in the Committee's terms of reference for its enquiry but, of
course, we will readily clarify any point as required.
Michael English
Chair, London Network of NHS Patients' Forums
8 January 2007
36 s 15 of the NHS and Healthcare Professions Act,
2002, repeated in s 237 of the NHS Act, 2006. Back
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