Select Committee on Health Written Evidence

44. Evidence submitted by Hull and East Yorkshire Hospitals Trust PPI Forum (PPI 30)

What is the purpose of patient and public involvement?

  1.  Healthcare is a service of intimacy, at a time of vulnerability. It depends absolutely upon trust. Patients cede to clinical staff the responsibility for their treatment and care, sometimes in life-and-death situations. Any necessary "consents" are informed by that relationship of trust. That the patient is at the heart of the service, first, last and always, and that there are independent, disinterested and expert patient and public representatives empowered to reinforce this ethos is of fundamental importance.

  2.  Patient and public involvement is not a pretty coverlet to sling over an unmade bed. It has to be more than mere window-dressing, a sop to a public whose taxes provide the £92 billion for healthcare.

  The NHS is an iconic institution, synonymous in the public imagination with cradle-to-grave care, as envisaged in the original "welfare state". Accordingly, PPI has to be fit for purpose, of real integrity. Only thus can it be the requisite sounding board for design, planning, service-changes, and systems' development, a real opportunity to get-it-right-first-time and avoid the cost, waste and dislocation of rectification. True PPI is a means to safeguard patient care, and assess clinical engagement, and managerial competence.

  3.  Authentic PPI is the vital means of balancing the power of the professional and the big institution and ensuring openness, transparency and accountability.

What form of patient and public involvement is desirable, practical and offers good value for money?

  4.  PPI should be local in shape and representation. There must be continuity and follow-through of issues rather than reliance on isolated snap-shots in time. Healthcare deals with the most vulnerable of society and society at its most vulnerable. The highest vigilance is required. PPI needs to be familiar with the patch and its characteristics and be free of the limitations of the one-size-fits-all model so often beloved of Whitehall. PPI representation should be as consistent as it is possible to make it, productive so as to retain members ,as it is by experience that laymen become experts in the system they oversee. Fragmented involvement is of little use. Diffuse transience achieves nothing. Scrutiny without knowledge is meaningless.

  5.  In practical terms, public involvement should be manageable in numbers. More is not always better. Many is not best. Problems of communication and of co-ordination then are in danger of reducing PPI to a web of committees and procedures.

  6.  Volunteers offer best value, for credibility in that volunteers are independent, accountable only to the public, and not in thrall to the system for their careers and livelihoods and in financial terms because given proper authority to monitor with meaning, to have involvement with influence, they will give their skills and time without pay, so long as out of any pocket expenses are re-imbursed.

  7.  Localism is all. It has to be said that as a national body, CPPIH represents very poor value for money. It has gobbled up the lion's share of the PPI budget while many Forum-members found that their expenses took a long time to come through and this limited or stalled their work and caused personal hardship.

  8.  CPPIH has been, with few exceptions, very unsatisfactory. There has been much staff turnover, and constant re-assignment and change of roles, leaving no ownership of ongoing issues. The glaring absence of any evident qualification for the job is astonishing. CPPIH shows little recognition of the competence and skills of Forum-members, many of whom are more able and professional than the CPPIH staff.

  9.  Education and training provided by CPPIH has been appalling, with "trainers" bought-in for odd afternoons and days. The level of "training" has often been derisory.

  10.  CPPIH has doggedly ignored the voices of Forum-members, has always been nervous of letting them do the job the legislation empowered them to do. In CPPIH's dual-role ("supporting Forums" and "advising the D of H"), Forums have come a very poor second. That CPPIH was moribund within six months of the start of the current system of PPI has, unsurprisingly, left CPPIH's staff anxious for their own futures and overly compliant to the D of H. CPPIH's representations of the situation with Forums, and the views and wishes of Forum-members, have often been misleading and damaging.

  11.  There is nothing to be gained by gratuitously abusing the Commission: these points are made solely because it should be understood how much Forums have achieved despite CPPIH, rather than because of it. Had the Commission performed as it should, and the money been devolved to the front line, there is no knowing what Forums could have achieved.

Why are existing systems of patient and public involvement being reformed after only three years?

  12.  The department of Health argues "the changing nature of healthcare and plurality of provision". Plurality of provision means nothing to the patient receiving renal dialysis, a hip replacement or emergency treatment in A and E. It should make no difference to PPI. Wherever NHS healthcare is provided, be it by private provider or NHS establishment, current legislation empowers PPI Forums to follow. Where ever a patient is referred for treatment by a PCT, PPI Forums inspect, assess and report. Why change? Why indeed.

  13.  The CPPIH has proved a sad creature. Supposed to support and empower Forums, it has, at best, disappointed and at worst become a by-word for contradiction, ineptitude and frustration. With the dissolution of arm's-length bodies, it had to go and this leaves PPI Fs notionally parentless.

  14.  Meanwhile, as many Forum-members and many MPs recognise, Forums have become ever more effective, exceeding all Ministerial expectations; to the D of H, Forums' voices are too clear and informed for comfort. Members' collaboration with each other, exchange of information, and networking with the wider user-community has made them a force to be reckoned with. The D of H has shrunk from the reverberations of this powerful patient-voice.

  15.  The presence of Forums, one for each Trust, has provided a very real engine for improvement within Trusts. As "critical friend", Forums have not only identified shortcomings and helped have these addressed but, empowered by knowledge of local populations, their needs, and the patch-wide healthcare infrastructure, have championed their Trust and its services. This has clearly improved the services and stands directly in the way of the D of H's moves to "market" healthcare and sell it off to the IS. Even the NHS logo is now for sale! To pull off this prostitution of our health service, the D of H needed to be able to convince the public that their NHS Trusts were "failing". Forums have ably shown that most "failings" are due to meddling from the centre.

  16.  The information on the proposed LINks, though short on detail, reveals a deep level of ignorance both from the Minister and from within the D of H as to the nature and operation of PPI Fs. For example, Forums already have dual-roles, which cross commissioner/provider boundaries and enable oversight of seamless care. Further, Forums interact with community and user groups, themeing the issues these raise and investigating and reporting as appropriate.

  17.  The so-called "reform" is driven by the latest Ministerial mantra, health-outside-hospitals. The whole focus of current thinking at the D of H is community, community, community. Moving the platform of PPI to "the community", the local authorities to whose boundaries the PCTs have been reconfigured, forces this emphasis. However, it subsumes and buries the specialist services. This is, quite literally, highly dangerous.

  18.  Further, pushing the host-role for PPI away from a central Commission and onto the local authority enables to D of H to abdicate responsibility: any failures, both in the authenticity and credibility of PPI and in the standards of services, will be attributed to "local mismanagement".

How should LINks be designed?

  19.  Though the name is unimportant—it is the substance which matters—the talk of LINKs is doing incalculable harm.

20.  Remit and level of independence

  PPI must have powers to inspect, freedom to decide when to initiate an inspection, a strong line to the D of H to report, and input as at present via the Commentary to the Healthcare Commission. PPI must be wholly independent, of Trusts, of commissioners, of healthcare providers, of local authorities, OSCs, SHAs and central government. PPI must be the voice that is free to say, "No." Only thus will it have credibility with the public, be able to attract and retain dedicated members and actually get results.

21.  Membership and appointments

  Membership should be open to all. Those at the hub, actively themeing, researching, and pursuing issues from across the patch should be a core team of ten to twenty. This is as many as will be readily found, able and willing to devote the time on an on-going and long- term basis to making this work. Experience of Community Health Councils and of Patient and Public Involvement Forums proves this to be the case as does "The Response to `A Stronger Local Voice'" which received only 500 responses; significantly, half of these from Forum-members themselves. Against a background of ever-increasing activity in all sectors of healthcare (for example, nearly 20 million A and E attendances alone, in the last year) this is an infinitesimally small sample of so-called "interested individuals". It is simply a myth that "most people want to become involved in PPI". Effective PPI does not need to contain a "specimen" of every human type: this is not Noah's ark. Appointments should have the input of Forum-members, as these are ideally equipped have a realistic understanding of what the work involves.

22.  Funding and support

  Funding must be ring fenced for the purpose. Having itself succumbed to the temptation to plunder "soft-targets" when money gets tight and robbed training budgets etc, the Department of Health cannot pretend that LINks' allocations left within local authority budgets will be immune from similar piracy.

  23.  Further, ring-fencing will provide a demarcation between "PPI" and "local government" that is more than financial. By ensuring the financial independence of PPI, it mitigates against the taint of politicisation. When it is understood how deeply the Janus-like remit of CPPIH wounded the development and progress of PPI Fs, it will be appreciated how important to the success of PPI is untrammelled independence.

  24.  Funding should recognise the level of expense incurred by the members. This varies considerably from a few pounds a month to a couple of hundred, depending on the activity, the amount of travel (both by car and by rail), and the attendance at meetings across the area and outside it. Stays away from home are not uncommon and hotel bills result. Retrospective reimbursement of expenses often causes problems. Members do not always have disposable income and should not have their role and participation curtailed by this limitation. There needs to be a support organisation that is responsive enough to accommodate members' incurring expense at short notice.

  25.  Support should be local, and with a public/High Street presence. The profile of PPI and its credibility is hugely enhanced if it is seen to have the importance that is claimed for it. Office skills, to a high standard, are essential for the host organisation. PPI Forums which have been supported by competent FSOs (Forum Support Organisations) have benefited enormously. Those subject to poor and indifferent support have struggled, redeemed by such members as fortuitously have had good IT skills and the time and money to deploy these. PPI should no longer be dependent on luck.

  26.  It makes sound sense to include as the host-organisations those FSOs which have effectively served their Forums. Forums know which these are and these FSOs are a tried and tested resource. Some very efficient and loyal FSOs have been lost due to CPPIH's "economising" on contracts and retaining only FSOs which could/would support six or more Forums. This must not happen again.

  27.  Areas of focus. A local authority area can be very large and contain a great diversity of healthcare provision. Healthcare professionals are governed for practice by the benchmark of competency and rightly so. Those monitoring healthcare also require competence. Put bluntly, you need to know what you are doing and understand what you are looking at. No-one would suggest that having a central heating boiler equips you to understand and inspect a nuclear power station! It is similarly ridiculous to say that everyone can assess ambulance services, mental health services or the services of a big acute hospital. The average individual would not know a DNA from a DOA or PACS from PBR. The old world of bedpans and bandages has been superseded by a multi-million pound industry governed by science and supplied by consortia. PPi has to specialise.

  28.  It is unrealistic to suggest that one LINk "covers everything". A dentist does not do gastro-intestinal surgery and a chiropodist does not do anaesthesia. A GP, even a GPwSI, does not undertake major procedures. There are horses-for-courses, and regardless of job-enrichment and role extension etc the professional boundaries, of necessity, remain. This is not job-protection but the protection of the patient.

  29.  Ambulance trusts operate across many local authority boundaries and most hospital trusts' services are commissioned by PCTs from several different local authorities. It is inevitable that PPI must revert to functioning in a way which recognises the particular case of the "specialist" trusts rather than have these prey to interactions with a raft of different LINks.

  30.  Having since the beginning of PPI Forums been a dual-role Forum-member (chairing a hospital trust Forum and being link-member to a main commissioning PCT Forum), I am well qualified to highlight the difference between the nature of services in the primary care sector and those in the secondary sector and the resultant different emphases of the Forums. The primary sector is essentially domestic in character, taking place in the familiar neighbourhood. The PCT PPI Forums deal with opening hours, distribution of pharmacies, dentists' lists, the physical accessibility and configuration of GPs' premises, patient information leaflets and so forth. The "specialist" Forums of secondary care, however, work with highly scientific and disciplined systems of great complexity, systems characterised by specific facilities and services found nowhere else, and having no parallels which provide useful insights through vicarious experience. PCTs may directly receive 80% of the money to fund healthcare but half of that is spend by them on hospital services. Put simply, these are different worlds. PPi must acknowledge and accommodate this difference.

31.  Statutory powers

  As already stated, these are essential. The increased plurality of provision makes it ever more vital that the right of access to all premises where healthcare is carried out is mandatory. The independent sector has been given from the public purse a privileged framework of PBR enhancement and guaranteed-activity payments yet has been quick to invoke the shield of commercial confidentiality. It wants both the toffee and the halfpenny. This mentality signals little hope of access by invitation. Without the right for PPI to visit, inspect and report, the independent sector will be a sphere with no transparency and no accountability. Public money pays for NHS activity in these establishments and the same scrutiny must apply here. Safeguards and scrutiny must be the same across all provision.

  32.  Statutory powers of access to and inspection of all providers of healthcare are the minimum required to give PPI any integrity and to attract and retain members. Without these, PPI is a talking shop, a gab-fest. Powers as currently enjoyed by PPI Forums need to be at the heart of the new legislation but with a strengthened right of access, preferably without notice.

33.  Relations with local health trusts

  Inevitably, the local health trusts are the organisations with the highest visibility in the public consciousness and are the providers easiest to identify. Notwithstanding the enlargement of services in the community, with nurse prescribers, pharmacy prescribers, enhanced care practitioners, GpwSIs etc, the shape of the healthcare scene in terms of institutions and premises will not change overnight, and the bulk of them will remain ostensibly the same. There will be dentists/GPs/health centres/clinics/walk-in centres for everyday use and there will be hospitals for elective procedures and times of crisis. Ambulance services will continue to bring the public from the scene of the accident, whether home or roadside, to the door of the acute hospital, and to the mental health hospital when breakdown is severe.

  34.  Each of these trusts has its own board, its own management, its own professionals. It is regarded, not least in financial terms, as a business in its own right. It will need to be dealt with as a separate entity. To say that LINks should not focus on "institutions" is to be divorced from reality. To say that the raison d'etre is "to follow the patient-journey" is to reduce LINks to a complaints' bureau and a conglomerate of personal agendas. This is not meaningful PPI.

35.  National co-ordination

  Belatedly, very belatedly, CPPIH is currently formalising the "associations" that Forums have built between themselves. There have been nominations for a National Association of Forums and elections are soon to take place. Such a National Association will provide a profoundly more authentic voice than has been heard through the assumed proxy of CPPIH.

  36.  One of the abiding frustration for Forum-members has been the refusal of CPPIH to take up suggestions and requests, CPPIH's claim to "speak for Forums" when what it propounded was wholly at odds with what Forums were saying. Forums have had to "work round" CPPIH and it has taken a huge amount of determination, persistence and effort finally to impact on decision-makers, having got through the walls that CPPIH put up. National co-ordination must be effected by PPI members, not by external agencies which are surrogates of Whitehall. If for no other reason, this is essential to avoid the taint of politicisation, both for the public and for those enlisted to LINks.

How should LINks relate to and avoid overlap with OSCs?

  37.  Overview and Scrutiny Committees for Health are locally elected political nominees. They are not initiates of healthcare and have neither the time nor the inclination to be so. Currently, most simply receive formal presentations from the professionals, sometimes as infrequently as six times a year. There is no way that this provides even the most token oversight of healthcare. OSCs need to be informed by troops on the ground and alerted to any issues of concern. LINks, like PPI Forums, will not overlap with OSCs.

  38.  Many OSCs have allocated, on a permanent basis, places at their meetings to PPIF members and benefited from this. OSCs have been better informed, provided with independent and evidenced data and thus enabled to exercise their powers in an informed way. It is desirable that this should continue and that places for LINks members should become part of the constituence of OSCs.

  39.  Foundation Trust Boards and Members Councils. By definition, the boards of Foundation Trusts are part of the trust. They belong to the system. The status of "Foundation Trust" makes no difference to the case for independent and impartial and disinterested scrutiny. It is apparent that even non-executive directors of some years service with NHS trusts can be very limited in their understanding of the context in which trusts work. Independence and the objectivity it brings is vital.

  40.  Formal and informal complaints procedures do not belong within PPI. PALS and ICAS exist to deal with concerns and complaints and the Healthcare Commission acts as the final arbiter when issues cannot be resolved. PPi should assess the services and the system, not fight individual battles.

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?

  41.  It has been suggested that public petition should be the trigger for examination of an issue. This is inappropriate as it comes in to play when the "concern" has already become entrenched. A petition is evidence of a lack of consultation, not a mechanism for it.

  42.  There are circumstances where it is obvious that consultation is required, the proposed closure of a hospital, or transfer of a service (eg dialysis, audiology) to the private sector, or relocation any distance of a GP's surgery. But if there is embedded, credible PPI, much of the consultation and opinion gathering will be an intrinsic and automatic part of the process, not an add-on, emergency contingent. The evidence from the patch will be to hand, the affected client-base will be known and their insights included. The greatest threat to ethos of Section 11 comes from the centre, when policy is changed at short notice and steamrollered through. Such imperatives make a mockery of PPI, consultation, and local decision-making.

Ruth Marsden,

Chair, PPI Forum for Hull and East Yorkshire Hospitals Trust

7 January 2007

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