Select Committee on Health Written Evidence

52. Evidence submitted by the London Network of NHS Patients' Forums


  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.


  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.


  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.


  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.


  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.


  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.


  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.


  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.


  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.


  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.


  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.


  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.


  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.


  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)


  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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