Select Committee on Health Written Evidence

108. Evidence submitted by Yorkshire and Humberside Specialist Forums (PPI 28)


  The situation of the "specialist" trusts merits particular consideration. While it is true that the 80% direct-funding for healthcare goes to the Primary Care Trusts, it should be understood that half of this is spent on commissioning hospital services.

  Further, the "specialist" trusts (hospital trusts, ambulance trusts, mental health trusts and learning disabilities trusts) operate a highly disciplined scientific service that requires particular knowledge to assess. To subsume this activity within a social and community care setting is a distortion of the realities, and a dangerous one. It skews the emphasis far too strongly in favour of the commissioning PCTs and reduces scrutiny of the specialist sector to a sub-group status at best.

What is the purpose of patient and public involvement?

  1.  PPI Forums are not committees. True PPI connects the user with the service. It engages the skills and insights of the local users in a critical way to improve the services and build the confidence of the users. Most importantly, it must enshrine the independence to act and the power to make a difference.

  2.  This is a deep responsibility but an essential one. For a long time, there has been but a tacit deference to PPI within the healthcare system whose culture often finds it alien, and the increasing pressures imposed by the endless "reforms" from the centre have left PPI still far from the force for good it should be.

  3.  The public fund the health service and entrust themselves to it. They need to have active representation in the system.

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

  4.  PPI Forums have done a good job. Bearing in mind their short tenure, and the severe counter-influence of Commission for Patient and Public Involvement in Health, Forums have achieved an enormous amount and at very little cost. Forums should continue. They already have the outreach and interconnection that it is proposed will be brought through LINks, and they already have the cross-boundary working that enables oversight of seamless care.

  5.  PPI Forums mirror the actualities of the current configurations of the service. Every healthcare trust is a distinct institution, operates as a business in its own right, must achieve financial balance, has its own board etc. The present Forums' model recognises this. The proposed LINks model would have most of the "specialist" trusts dealing with LINks from several local authority areas. Ambulance trusts operate across local authority boundaries and the hospital trusts' services similarly are commissioned from a wide area.

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

  6.  The official Department of Health line is two-fold. First, the Department says that "the nature of health and social care delivery is changing radically". (Should this be so, it is solely attributable to the policies of the Department itself and more importantly, little of it will be apparent to the public at the interface. The Department constantly issues re-assurance that "it's all the same, only better") Second, the Department says that "more people want to become involved." There is little evidence of this. If asked if they are interested in "being more involved", most people will say they are, but few ever advance beyond this.

  7.  CPPIH has been from the start unsatisfactory and confused. The dissolution of arm's length bodies spelled its death-knell and it leaves PPI Forums ostensibly parent-less.

  8.  Forums, despite the inadequacies of CPPIH, have been a constructive influence. They have confounded all expectations, triumphed over the shortcomings of the Commission, and become a force to be reckoned with. The Department of Health has shrunk from the reverberations of this powerful patient-voice.

  9.  Forums' relationship of "critical friend" to their Trusts has refreshed the quality of the system and improved the services. The Department of Health, determined to market healthcare to the highest bidder and fragment it to the private sector, has a vested interest in being able to present trusts as "failing" in order to justify the sell-off. Forums have ably shown that most so-called "failings" are due to interference from the centre, interference often architected by the Minister.

  10.  The proposed LINks have been pushed on the basis that they will enable cross-boundary working and bring in user-groups, community groups and so forth. Such arguments stem from the ignorance in the Department of Health of the current system of Forums' working, for in order to achieve this situation, no changes are necessary. Cross boundary working and involvement of other groups has always been part of the of the modus operandi of PPI Fs. "It ain't broke so don't fix it."

  11.  The intention to site the host-organisation within the local authority is designed to enable the centre to abdicate responsibility for outcomes. (If PPI succeeds, the Department of Health can claim credit for the idea. If PPI fails, the Department will blame local mismanagement.) If the intention were truly to encourage "localism", there would not be the current interference from the Department, the insistence that PPI Fs must go and LINks must replace them. No evidence has ever been produced to suggest that this is what people want.

How should PPI be improved?

  12.  Outreach by PPI Forums to community and user groups and Forums' interaction with others is a collaboration that already exists.

  13.  Forums should remain, at the centre of PPI. They form the natural and established hub for all those individuals and groups with concerns and interests in healthcare. Forums have a public profile, a distinct voice, and are a resource accessed by those with issues to be addressed, by opinion makers, media, etc. Forums have the respect of their Trusts, a developed knowledge of their services and systems, and a statutory mechanism for co-working with a remit of safeguarding standards.

  14.  Forums provide a necessary resource for their Trusts who use them to accredit their services. The independent and informed assessment by Forum-members, whose relationship with the Trust is embedded and on-going, is vastly more meaningful than the isolated snap-shot in time of a rare Healthcare Commission inspection.

  15.  It has been said that "PPI is always the same people" but this is no criticism, rather a recognition of the realities. It is simply not true that there are thousands of people out there panting to be involved in PPI. Only 2% of respondents to "A Stronger Local Voice" were members of the public and the Department of Health, with all its resources, could elicit from the whole of the country only 500 responses to its document "A Stronger Local Voice" (see "Government Response to `A Stronger Local Voice'") yet last year, nearly 20 million people used A and E services alone: the interactions between the public and healthcare run into countless millions. Against this, the 500 responses to "A stronger Local Voice" are statistically insignificant. However, it should be noted that the majority of the responses came from those actually involved, PPI Forum-members.

  16.  It has also been said that PPI Forum members are predominantly "white, middle-aged and middle-class". So are members of Parliament. Putting up for Parliament, like putting up for PPI, is optional and dependent on the motivation of the individual. Some are minded to serve. Many are not. This is no grounds to criticise and abuse those who do. Rather, they should be applauded. Ppi is never going enlist "everyone", nor would it be workable if it did: it operates by eclectic representation. It is a means for voices to be audible and influential, not a Noah's ark to house every specimen of humanity.

  17.  Funding must be ring-fenced and devolved to the local level. The CPPIH has used up the lion's share of the PPI budget under the current system. The 134 members of CPPIH staff have taken more in expenses in the last year than all the 4,000 plus Forum-members put together. The money has been used to poor effect by the Commission. Had the money been available locally to scope the work of Forum-members, managed locally as required by the Act, the achievements of the Forums would have been even more remarkable.

  18.  The independence of PPI is of paramount importance. Forums currently have that independence but the new proposals, advocating that host-organisations should be selected and contracted with by local authorities, and that the new membership be appointed by this host-organisation, risk jeopardising PPI with the taint of politicisation. Further, many local authorities have little interest in devoting time and energy to setting up these "hosts".

  19.  Many of the Forum Support Organisations currently supporting PPI Fs are excellent. Forums know which these are. It makes sense to retain these as they have proved their worth. Support must be local. The CPPIH practice of dispensing with those FSOs which could not or would not support large clusters of Forums is a mistake. CPPIH defended this on the grounds of rationalising to economise, an irony not lost on Forums.

  20.  The funding should be used on the front line. Pro-active PPI uses money which historically has been reimbursed retrospectively. This has mitigated against those Forum-members with little or no disposable income and has hampered, even stalled their work. There needs to be a support system to accommodate ready access to funds.

  21.  The CPPIH has proved very poor value for money. Communication and support from the Commission has been lamentable and the so-called training-provision derisory. The benefit from the Commission to Forums and their work has been nil. The Commission has misrepresented Forums' views and wishes and has often actively abetted initiatives to restrict and hamper them. Ultimately, CPPIH has been the prime architect of the current proposals to dismantle PPI Forums. This is a disgrace.

  CPPIH has got things badly wrong. It is to go and that is the only positive point in the current scenario. At the risk of alienating goodwill by excoriating CPPIH, the depth of the Commission's inadequacies and failings, and the frustration, damage and limitations these have inflicted upon Forums and their work must be plainly spelled out. Forums have succeeded despite CPPIH, not because of it.

  22.  The current powers of PPI Forums must be retained and it must be made clear that the right to enter, inspect and report ("visits") applies to the independent-sector where NHS activity is undertaken, as well as to NHS premises.

  23.  The relationship of PPI Forums with local health trusts is well established as "critical friend". It would be both stupid and dangerous to destabilise or dismantle this. These dedicated relationships have taken time to build up and are bearing real fruit. Both parties wish the status quo to remain. (For example, Bradford District Care Trust freely chose to involve and use the PPI F as its only vehicle for PPI and exchanges with patients and public. This choice by BDCT represents an important change and improvement in an evidence-and choice-based NHS. ) Trusts are already under too much and too relentless pressure to contemplate change here. To meet the Core and Developmental Domains of the HCC's assessments, Trusts are reliant upon their Forums.

  24.  National co-ordination for PPI is in hand through the pending elections for the long overdue National Association of Forums. This will at last circumvent the quasi-professional "talking heads", from CPPIH and elsewhere, who with no justification have claimed to speak for Forums. The National Association should also obviate the soaking-up-of-funds at the centre.

How should PPI relate to and avoid overlap with OSCs?

  25.  OSCs are first and foremost political, elected representatives. They have no claim to be knowledgeable on health matters. They meet according to a local government timetable, and receive presentations from health-professionals. Many OSCs have allocated places to PPI F members and thus enriched their understanding. It is recommended that this become the norm. Forums can be called upon by the OSC, at short notice, to follow up concerns, enter and inspect. The relationship should be symbiotic: Forums can refer matters of concern to the OSCs, the OSCs should elicit the help of the Forums to scrutinise and report.

  26.  Foundation Trust status alters the governance and financial remit of a trust. It does not confer infallibility in clinical care. The Trust still provides services to the people of the patch and there remains the need for totally independent PPI.

Why should the "specialist" trusts be an extra ordinary case?

  27.  The Department of Health is fixated on community, health-outside-hospitals. The PCTs, now aligned with the local authorities, hold the purse-strings. The enormous, far-reaching and rapid changes unleashed upon the healthcare scene from Whitehall continue remorselessly and Trusts are already reeling.

  28.  The "specialist" trusts' situation is different from that of the PCTs. The "specialist" trusts have very large fixed costs, high overheads, and carry responsibility for unplanned and emergency care 24/7. They are reliant on high-tech and expensive hardware, equipment and communications systems. They are a vital part of civil contingency response to threats ranging from terrorist attack to avian influenza. They play the key role in training and research and clinical innovation. Their planning has very long lead times, involving immense investment before any income from activity. The D of H's current insistence on in-year financial balance is wholly unforgiving of all this. Its constant shifting of goal posts is irresponsible, unnecessary and particularly punishing to the "specialist" trusts. The "specialist" trusts' abilities to accommodate to all this, even if it were clinically desirable that they should, is very limited. Much of this is ill understood in PCT-land, even amongst the commissioners themselves. The "specialist" trusts need their dedicated PPI Fs as their advocate, champion and ambassador as much as they need them as their critic, scrutineer and clinical-conscience. The Department of Health and the government will also obviously benefit from the continued expert input of PPI Forums.

Ruth Marsden

on behalf of the "Specialist" Forums of Yorkshire and Humberside

6 January 2007

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