As we all know from our constituencies, extremely good local patient and voluntary organisations do a brilliant job, whether they be the local branches of the Alzheimer's Disease Society or the Multiple Sclerosis Society. It is right and proper that we should give such organisations the opportunity better to influence local health services. Therefore, they will be represented, as of right, on the patients forums.
The second group of people who will be represented is simple and straightforward--the patients who have previously used the health service. That is reasonable. We all use local health services, but the people who really count are the patients themselves, so it is right and proper that they should have an opportunity to put themselves forward to the independent appointments commission, which will make a decision and try to achieve the right balance between different interest groups, genders, races and so on to ensure that every primary care trust and NHS trust has an organisation that it can be legitimately said is standing up for and properly representing the needs of patients. (Alan Milburn NHSR&HCP Bill, Jan10, 2001)
There is no doubt that some CHCs (a link to welsh Community Health Councils which still exist) have been very effective in representing patients' views but we must recognise that their contribution has been patchy; indeed, that cannot be denied. I am satisfied that the latest proposals really will put patients absolutely central inside the NHS, strengthening the power of the patient and giving many more the opportunity to be involved. (Baroness Pitkeathley, Lords introduction to the NHSR&HCP Bill, Hansard 31.01.02)
Many CHCs do outstanding work which is of enormously high quality. Some CHCs, however, carry out work which is of rather limited quality, while a handful of CHCs are, frankly, dysfunctional. (Lord Harris of Harringay)
The forums will be wholly independent. Unlike CHCs, which are partly appointed by the Department of Health, members of each new statutory patients forum will be appointed independently by the new independent NHS appointments commission. Furthermore, every patients forum will have the power to appoint a non-executive director to the trust board. For the first time, patients will elect a patient to the governing bodies of local health services as of right. For the first time, too, a patients' organisation, the forum, will be able to monitor, review and inspect all aspects of local health services from the patients' perspective. It will be able to visit and inspect every place in which patients are treated--hospitals, nursing homes, private health care, and, for the first time, all primary care settings.(Lord Hunt of Kings Heath - presenting the Bill)
There will be two points of entry to the patients forums, but only one organisation responsible for the appointments, which will not be me, other Ministers or the Department of Health but the completely independent appointments commission. I hope that that deals with the concerns that are being expressed about independence.
PALS (Patient Advice and Liaison Service) will be placed in every trust to have the knowledge and clout to sort out problems for patients before they escalate into serious complaints. To safeguard against their "capture" by NHS trusts or primary care trusts, the independent patients forum will be able to recommend that a patient advocacy service be taken out of the trust and be run independently from it. (Alan Milburn, NHSR&HCP Bill, Jan 10 2001)
We have ensured that PALS will be based in trusts but have also ensured that each independent patients forum will monitor the local PALS and will have the power to remove a failing PAL from the trust. (Lord Hunt of Kings Heath - presenting the Bill)
The patients forum will also oversee the work of the patient advocacy and liaison services, (‘advocacy’ later changed to ‘advice’) which will provide an entirely new tier of service in the NHS: someone to sort out problems within hospital or community services on the spot, be they poor communication, worries about cleanliness or discharge arrangements.
Helen Jones (Warrington, North): Will my right hon. Friend clarify the role of the independent appointments commission? I am concerned that large parts of constituencies such as mine remain under-represented throughout the health service. Will the commission actively seek applications from unrepresented groups and areas rather than simply appointing from among those who put themselves forward?
Mr. Milburn: That is obviously the right thing to do. Before 1997, women and people from black and ethnic minority backgrounds were under-represented on trust and health authority boards. We changed that precisely because Ministers operated to a clear set of guidelines that increased the ethnic and gender mix on those boards. We can give precisely the same guidance to the independent appointments commission.
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.
Helen Jones: Does my right hon. Friend accept that if we are to strengthen the voice of communities and patients in the health service, we have actively to seek to involve people from communities that are currently under-represented in the NHS's decision-making process? Will he give us an assurance that the commission will actively seek the involvement of people from deprived communities not only on advisory bodies, but in the NHS's decision-making process?
Mr Milburn: Unless we improve the NHS's governance and make it more representative of the local communities that it serves, we shall never reach the position at which local services are responding to the needs of local communities. By giving the commission the tangible function of broadening the scope of representation in former NHS structures, it will be able to perform a very important function in democratising the NHS and the way in which it is run locally. We need to ensure that the patients forums are not only representative of the local community but can express expertise (but see my outline of how the government are now moving in the other direction - making PPI more remote)
To ensure that there is a strong voice for patients nationally as well as locally, we are working with voluntary and patient groups, including the College of Health and the Long Term Medical Conditions Alliance, (as it turned out to be) to explore how best to form a national patients' organisation to act as an independent umbrella body for NHS patients. The feasibility work is being funded by my Department, and I expect that when it is completed in March the Department will in turn provide the funding needed to establish and run the new national patients' organisation. (Alan Milburn).
(As soon as this Scoping Report was produced, it was studiously ignored by the Government, despite having many constructive recommendations which, IMHO, would have avoided the three ring circus that PPI has turned out to be under CPPIH)
“a shambles;”....the Government hadn’t listened to advice.....
serious problems with the appointment of Forum Support Organisations.......none, as yet, are functioning properly......no fully viable replacements for Community Health Councils three months after their demise..........hijacked PPI Forum independence..........appointees with entrenched bureaucratic and paternalistic attitudes........glib disability discrimination by the Commission......serious accountability deficits...........hidden agendas influencing the way CPPIH is working..........not having their appointees Criminal Records Bureau screened
talk of PPI independence and consumer centrality can only be pure spin.......CPPIH ineptitude and/or political expediency..........and pervasive equivocation...” This in my contemporary observations four months after the installation of PPI.
and
“CPPIH’s public misinformation.... equivocality, incompetence, disability discrimination........the issue of CPPIH accountability......whether or not the right people have been managing PPI.........questions around equality of opportunity...........whether or not the right people will manage PPI in the future...........(CPPIH) succesfully scaring PIFFO into censoring their site.......in many places Forums are still not functioning” in my up to date Open Letter to Meredith Vivian.
For the Official version go to the CPPIH website (ext link).
And on a more prophetic note:
I understand the role of the Commission for Patient and Public Involvement in Health and that local networks will support and co-ordinate patients forums, commission independent complaints advocacy and help community groups. We will also have outreach teams working from local premises and standing lay reference panels to guide the local work programme. The local networks will be the glue to bind other elements together. Frankly, if the system was not fractured we would not need glue. I am concerned, as I was about the previous proposals, that we should not have dislocated structures; we should, instead, have united structures.
INSTEAD, WE GOT THIS:
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