108. Evidence submitted by Yorkshire and
Humberside Specialist Forums (PPI 28)
THE CASE FOR THE "SPECIALIST" FORUMS
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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