ppimpediment

PPI = Patient and Public Impediment

Community Health Councils in England were abolished on 1st December 2003. The Government promised new arrangements to replace them by that date which would enhance service user and carer involvement and independence of voice. Even at this late date though, those new arrangements are not operating and the Commission for Patient and Public Involvement in Health (CPPIH), a QUANGO set up to establish Patient and Public Involvement Forums for every NHS trust is presiding over a shambles.

People who rely on heathcare services, whether they are called patients, clients or service users and carers are experts in their own right. They have, historically, tended to be looked down upon and depersonalised by clinicians and professionals. Over long years those people 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 is called service user and carer involvement and it should be synonymous with Patient and Public Involvement.

Patient and Public Involvement Forums are statutory bodies at the core of a pack of innovative arrangements replacing Community Health Councils in England - a real cultural change in heathcare; on paper, putting the service user and carer at the centre of service provision and development. “Our vision is to move away from an outdated system of patients being on the outside, towards a new model where the voices of patients, their carers and the public are heard through every level of the service, acting as a powerful lever for change and improvement.” ¹; “.....we will involve and consult patients and the public in how health services are planned and developed. Patients’ views, positive and negative, about their experiences of the National Health Service should be welcomed, taken seriously and used to bring about change.” ²

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.

But there are early concerns that this new concept may be going the same way as other Government new initiatives where the ideas and principles are good but the application is chaotic: the tax credits three ring circus, for example. In the Guardian newspaper as early as last October, Hugh Muir pointed out: “Critics claim abolition of Community Health Councils in favour of new system will lead to chaos” and he listed a number of serious problems that had arisen already, quoting the then director of the Association of Community Health Councils: “...this embeds the most uneven, chaotic system imaginable.”³

From another angle, the question arises: is there is an element here to do with general mistrust in Government led initiatives? The opportunities presented on paper for real service user and carer involvement are attractive and far reaching. One would expect enthusiastic collaborative and partnership working by service users and carers. Yet, fourteen months into the actual launch of the changes (the CPPIH was installed on 1st January 2003.), a comprehensive search of websites dealing with all kinds of disability and service user and carer involvement reveals an almost complete absence of awareness or involvement. In addition, I have directly canvassed thirty seven of these organisations. I had just two responses and one of those merely expressed disinterest.

The general picture throughout the country probably varies, although the consistent lack of interest from the very organisations which should have been engaged as a priority suggests widespread failure. The one response I had from my canvassing, a spokesperson for a London based HIV?AIDS organisation said the Government hadn’t listened to advice and there were serious problems with the appointment of Forum Support Organisations.⁴

Here are four actual examples of the kinds of things that are going wrong (for which I have evidence). In isolation CPPIH could claim them to be passing glitches but if they are multiplied throughout England, they could have very long term negative consequences:

PPI Forums were supposed to have been operational from 1st December 2003 to replace Community Health Councils which, in England, were done away with on that date. In the face of CPPIH claims to the contrary, at the time of writing, many of the Forums have only just attained their initial operational number (7 members) and none, as yet, are functioning properly - this means, in spite of Parliamentary assurances, there are no fully viable replacements for Community Health Councils three months after their demise;

One Forum Support Organisation known to me immediately hijacked PPI Forum independence by assuming control, direction and management with the encouragement of the regional CPPIH. It has entitled its facilitators “PPI Managers” clearly signalling its intentions. This of course is an effective deterrent to any experienced service users and carers who might be interested in getting involved. It means too, and crucially, that the decisions being made are not those of service users, carers and the public; but those of another corporate body. And there are more serious moves to tightly control and manage patient involvement (see below);

In its clamour to recruit 4600 volunteers for the PPI forums by 01.12.03. the Commission appears to have appointed anyone who applied. As a result, they have installed many of the usual self-styled great and good citizen professional volunteers who do this kind of work out of self glorification and self advancement; appointees with entrenched bureaucratic and paternalistic attitudes. Their kinds of values are death to service user and carer involvement;

the Commission makes great play of championing anti-discriminatory practice. Their Values Statement includes: “Use an inclusive, anti-discriminatory approach within all our procedures and practices and fully adhere to all equal opportunities.”⁵ Yet I have first hand evidence of glib disability discrimination by the Commission around cobbled arrangements for training. There are serious accountability deficits - volunteers are not covered by the Disability Discrimination Act and CPPIH appear to have carte blanche in this respect. Requests for CPPIH to explain their lines of accountability have met with silence - so much for the public openness and transparency which not only their Statement of Values refers to, but is required by the ‘Nolan’ rules on Standards in public life. So much for one of the DoH’s rhetorical mainstays of PPI: “Strengthening Accountability”.

One rather strange decision by CPPIH is that of not having their appointees Criminal Records Bureau screened - now usual practice applied to employees and volunteers (and required by law) where people come into close contact with children and vulnerable adults in the course of their functions and activities. These appointed volunteers will all have ready and legitimated access to children and vulnerable adults . Each member “...will also have identity cards carrying the logo to enable easy recognition and facilitate access to hospitals, surgeries, clinics and pharmacies they may inspect.”⁶
To date, CRB screening for volunteers has been free of charge so cost is irrelevant to that decision. We can though speculate on a couple of not unlikely reasons:

CRB problems are well known - the volume of requests for screening have far exceeded expectations and there is still a substantial backlog. Was this decision made at Government level in the name of political and administrative pragmatism?

Doing away with CHCs was highly controversial with a sizeable Labour Parliamentary revolt around it. It was a political imperative that Parliament could be assured there would be an immediate viable replacement for CHCs when they disappeared from England last year (and there were several Parliamentary assurances throughout 2003 that PPI Forums would be in place). Under political pressure to appoint the required number of volunteers by 1st December 2003, did CPPIH decide that CRB screening would cause too much of a delay?

There are undoubtedly hidden agendas influencing the way CPPIH is working. Questions at CPPIH training sessions reveal a tacit policy of repressing PPI Forum activity and subjecting it to close professional supervision. Is this because of issues around protection? Whatever, it does mean all their talk of PPI independence and consumer centrality can only be pure spin. In a formal press statement to me CPPIH carefully said: The Commission and the Department are currently working together to draw up arrangements which..... provide appropriate safeguards for patients. In the meantime, we have issued guidance to Forum members that when they conduct visits they should normally be agreed in advance with hospitals, should not be conducted by a member on his or her own, and identity cards should be prominently worn.” But Dr Jane Martin, Executive Director of the Centre for Public Scrutiny, also in a statement to me, added: “ To the best of my knowledge there has never been any cause for concern here because their access will always be supervised by professional staff in attendance. Such a safeguard could become common practice with Patient Forums.” The sad old interference and influence by professionals and management, and control and direction by corporate interests rear their foetid rumps again. Sad because, as well as protection for children and vulnerable adults, this control freakery could easily have been minimised by CRB screening.
It is a disastrous shame that a potentially beneficial innovation like PPI involvement is being wrecked by CPPIH ineptitude and/or political expediency. The recent Commission for Health Improvement report on Patient and Public Involvement identifies the old tokenism as a thread running through most of the efforts made by NHS trusts: “There are also numerous examples of PPI going on in what may be termed ‘safe’ areas, such as having reader panels for patient information leaflets...But often these project groups sit at the periphery of of corporate decision making and the people involved may be marginalised and unsupported.”⁷ CHI should look at CPPIH too, and urgently. They would find the same tokenism - and pervasive equivocation as well. Instead of a QUANGO, perhaps a Commission elected from disability and service user and carer groups could rebuild this wreckage before it is condemned as uninhabitable.

Mike Stallard.
© 29th February, 2004.
¹ “Involving Patients and the Public in Healthcare: a Discussion Document”, DoH, Sept. 2000.
² (David Lammy, Parliamentary Under Secretary of State for Health, in his foreword to “Strengthening Accountability”, DoH, February 2003.).
³ “Preparation for patients’ forums in crisis” The Guardian 27.10.03.
⁴The bodies, usually large not-for-profit organisations such as the Shaw Trust, commissioned by CPPIH specifically to provide administrative support and facilities for PPI Forums enabling them to carry out their independent work.
5 CPPIH Statement of Values on their website: www.cppih.org
6 CPPIH press release 11.02.04.
7 “Patient and Public Involvement in the NHS”, Commission for Health Improvement, 04.02.04.

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