138. Evidence submitted by Paul Brian
Torey (PPI 47)
Introduction
1. I am giving evidence to the Health Committee
from the realistic and mixed patient & public perspective
of the longer term patient that has always needed a better more
health giving mental health service. I will put forward some views
on LINks by first demonstrating some evolved experience of current
practice and its shortcomings which we will all need to guard
against in the future. I am also someone who has served with the
Birmingham & Solihull Mental Health Patient And Public Involvement
Forum as a Deputy Chair and though I left that PPI in 2005 I have
continued to work with it informally and provide it with information
about the reality of the patient's perspective In Birmingham.
I have also continued to provide Dr Lynne Jones MP with information
demonstrating patterns of poor Section 11 consultation in Birmingham
regarding changes and services being varied in several Mental
Health Day Centres in Birmingham.
2. 1 was more recently liaising effectively
with the late Michael Elvin who died in December 2006. He was
a Mental Health (MH) campaigner and previous Chair of the Birmingham
& Solihull Mental Health Trust (BSMHT) PPI and he had provided
some good evidence in October to November 2006 of evasion of Section
11 consultation with a concerning pattern of alteration, of an
MH Day Centre service by increments over time, effectively driving
away some patients
These combined evidences and patterns have revealed
real layers of flaws in the local practice of "modernising"
policy that is desired by the Government. Dr Lynne Jones M.P.
has more latterly, after meeting constituents, who have re-enforced
claims of poor consultation and patient support, written to the
BSMH Trust and asked them to improve their patient consultation
practice and follow up, and demonstrate that more openly.
The BSMH Trust have been very slow to respond
The Patient & Public Involvement Ethos And Supporting
Patient's Needs More Fully
3. Secretary of State for Health John Reid
issued the words in 2003 that the Health Service should trust
the patient.
"Trust me I am a patient"
4. Yet in both PPI terms and in ordinary
experience terms of being a patient broadly, there has not been
solid supportive cornerstones. It is not possible broadly to have
more genuine democratic patient involvement rights as an MH patient
until Patient Choice of treatments comes into being properly in
the services that are currently overloaded with system Top-down
approaches and more bureaucracies. I would urge the costs of those
bureaucracies should be converted into more genuine therapy and
marketised therapeutic community supports for patients as soon
as possible . In one sense we need eventually less bureaucracy
surrounding "Patient involvement" and more consumer
demand-side democracy via Choice for the immediacy of proper patient
involvement in health to take place.
5. Yet the Government has clearly seen MH
as a way of socially engineering people back to work or "socially
including them" yet the reality of this overapplied (by mistargetting)
approach has in Birmingham, seen patients being uncoupled without
choice from services despite PPI concerns. All along we the patients
have seen a command and control approach both from the Government
and the local Trust and other bureaucracies. On the PPI some of
us were quickly aware that NIMHE bearing in on the services was
hailed as an innovator but was changing into little more than
an attempt to get people back to work before many had even had
a treatment that actually fitted them towards more genuine "Patient
led" recovery.
6. What some of us have seen is patients
being sucked progressively into the "meetings culture"
because both Trusts and NIMHE and other agencies have shaped "patient
involvement" inside the pre-existing vacuous disempowering
context of no "Patient Choice" and therefore into one
of the pre-existing bureaucratic practice models ie meetings meetings
meetings is all the game.
7. Suddenly empowerment was translated as
"patients going to meetings" with planners and teams.
This is frankly and eventually frustrating and quite crazing.
8. First and foremost medium and longer
term patients need REAL Choices of treatments which fit them,
are individualised, and are therapeutically supportive post-crisis
so they can become the best socially creative shape that is possible
without being sucked back into crisis cycles yet again. Secondly
all need development grants for their needs . They don't need
meetings after meetings with planners and agencies.
9. Immediacy of support means Patient's
Choosing their health support packages and doing so locally where
it fits them. That's real involvement.
10. Being an MH patient on the PPI was very
difficult as it was for other patient-colleagues because the Commission
For Patient & Public Involvement In Health would only give
a carer's allowance so that someone could be alongside the patient-member
at meetings I proposed to CPPIH as Deputy Chair, a special support
group in late 2004-05 with the CPPIH region and said it should
have some counsellors on it to help with the stress of being a
PPI "mental health" member which was made additionally
stressful because we were effectively monitoring our own Trust
which in the main did not service the PPI mental health patient
members well either. CPPIH responded to me by saying if the PPI
was too stressing they would not recommend it. LINks I hope will
support mental Health patients needs for those who get involved.
11. Whilst its true some instability is
embedded in being an MH patient its clear this has to be treated
as a disability factor and shored up appropriately with individual
special group supports. A colleague on the PPI remarked that keen
reflective knowledge by patient-members themselves, of what factors
worsen intrinsic instability in the whole service context surrounding
the patient, was a real asset strength of the PPI. Patient-members
thus were seen to be indicators of realities. Yet poor supports
by CPPIH undermined that asset strength and much of it was lost
because of the additional stress on patient-members.
12. All new arrangements must look to the
immediacy of what Patient Involvement has to mean. It has to mean
patient power existing at the very GP and/or clinical gateway
to services that fit them by PATIENT CHOICE. If CHOICE is avoided
then we enter the mystification of tinkering with services (the
meetings culture) and creating health bureaucracies to socially
engineer "results" which are mystifyingly leaving many
of us unsupported therapeutically This is not a reality you can
avoid from a patient perspective. It is where many of us live
inside paradoxical arrangements or services that do not support
our needs and which we are trying to alter in a double paradox
of monitoring them.
LINks
13. LINKs (Local Involvement Networks) are
proposed for a future when at least some PPI's were getting to
grip with trying to democratise patient health services through
statutory Section 11 Consultations. Apparently the Govt. believed
the "pace of reform" was being slowed down by PPI's
insistence for instance on following Section 11 consultation practices.
A DOH paper indicated that. So where is the implication of patient
democracy in that? Are LINks a woolier way of watering down perceived
opposition?
14. Where MH services are varied and that
will affect health outcomes of those patients already in receipt
of a service eg Mental Health Day Care Centres, then any consultations
should backed by law and that power should be retained. Consultation
should be seen to be done individually at Centres and transparently
so and must be recorded otherwise local health officials will
play games with this in a bid to secure an easier flow of apparent
(rather than real) policy results from their management perspective.
MH patients will suffer. That is what I have already observed
The BSMHT PPI did so too in a 2005 "Impact Study" when
following up patient experiences after service changes. With poor
check and balance local bureaucracy dictates. The Local Trust
also "buried" a PPI report from December 2004 to July
2006 which asked for the patient's own voice of satisfaction to
be recorded. The Trust quite cynically created a staff report
about patients and said that was satisfactory. Therefore there
has to be a robust power to monitor this kind of service-knows-best
phenomena with LINks and it cannot be solely left to OSC's. In
Birmingham the task would be too much. On the other hand without
the power of "Patient Choice" in MH we will not create
effective patient-shaping of mental health but only a trend to
deny the patients own voice of choice more insidiously under layers
of new mechanisms. Consultation and "Patient Involvement"
must go hand in hand more with "Patient Choice" tooall
must increasingly re-inforce the other.
15. Thus LINks must retain an independent
power to view in on what is happening in service areas where patients
are affected by proposed variances of services. They would be
a warning system that should both have the power to view in and
refer matters to the OSC or even beyond to the Health Care Commission
and Secretary of State.
16. The new Foundation Trusts Governor and
Non Exec. member relationship with LINks I do not think can be
anything but a co scrutiny view. But its also broadly a nonsense
for MH patients to pretend "partnership" through proxies
like Governors without the equalising "bottom- up" power
of purchasing choice of health packages in MH, strengthened by
LINks watching over matters and being patient-orientated. Foundation
Trust arrangements with LINk's have to keep looking at "bottom-up"
patient led arrangements and securing their evolving reality.
LINks have to have conjoined function with all involved to secure
more "Patient Choice and led" services.
17. Duplication of functions here are actually
notionally necessary otherwise the large Trusts can escape attentions
on their performances because there is not enough people to do
the scrutinising. It is to be hoped that this "bureaucratisation"
is an transitory evolution towards patients controlling more of
their own health packages and rendering "middle mechanisms
and groups" about what they want more redundant in time.
Complaints Procedures
18. I am not convinced the Local Mental
Health NHS should believe in the efficacy of its own complaint
procedures which can be very conflict model driven still with
MH patients in my experience. In fact there needs to be a beefed
up ICAS which is accountable too to LINk's. There ought to be
recourse too to independent mediation with the State paying. I
would not ideally use either the Trust's complaints procedures
or indeed its PALS services both of which are flawed locally and
inspire no confidence at all in me. LINk's should have the simple
power to have local hearings about patient problems to take evidence
too. They should augment OSC function as well as have freedom
to report and express themselves.
19. ICAS as it shaped for MH in my opinion
in Birmingham, does not inspire confidence locally and is weak.
MH Advocacy itself in Birmingham is cherry picked for easier to
deal with category groups and many, have overclose financial arrangements
with the PCT's or Trusts. Some patients and their problems also
fall through geographic catchment nets of advocacy networks so
ICAS needs to be strengthened. It needs to be retained and made
stronger.
LINks Checks And Balances
20. A LINks body with an MH Sub Committee
arrangement for instance, will almost certainly be made up of
pre-existing relationships and would need some duties in law (to
ensure the patient's perspective) to balance out its inherent
tendency to keep the local status quo Reform momentum in favour
of the patient must create a way to challenge that. The PPI's
were notionally and somewhat Independent. The LINk's may turn
into a new body where local groups with favoured arrangements
will support themselves within LINks without deeper authentic
connection to patients. Some already claim a connection patients
interests that is not completely valid. We have a "User Voice"
in Birmingham (from 2002) where all ex users are Trust staff now
and the local PPI is set to put forward a model for its independence
(after a public & patient petition expressed the need) yet
its clear the Trust wanted to dilute the patient voice into this
"User Voice" mechanism it could handle, and that does
not produce any stats on patient's seen and solutions created.
21. Therein lies a problem of local health
bureaucracy having too much power to arrange others apparent "voices"
and that can feed potentially into a less than independent LINk's
body.
22. I feel the LINk's must have the power
to commission independent research therefore to performance review
themselves in an honest mannerthat must involve patient's
views locally without mediation by Trust professionals or staff.
23. LINks should be able to create their
own visiting teams to go to see patient facilities and services
otherwise we weaken the notion that the services are to be viewed
accountably at a direct experiential and facility level. "Hand's
On" like this approaches are real to patients and will help
confidence building in the process.
24. LINks must have the formal power to
issue reports of concerns to whomsoever. This is a democracy and
the bureaucracy in health is far outweighing the ability of the
ordinary patient and public to create public accountability and
due criticism.
Paul Brian Tovey
Independent Monitor Mental Health Matters
8 January 2007
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