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 unimportantit
is the substance which mattersthe 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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