Examination of Witnesses (Questions 220-239)
MRS JENNIFER
BEESLEY, MS
PENNY ROBINSON
AND MR
BARRY SILVERMAN
22 FEBRUARY 2007
Q220 Mike Penning: Briefly, you have
kindly cited successes in the excellent work you have done with
in the NHS and pushing everything that has been done, but you
must have had some problems. Can you give an instance of where
you have basically hit a brick wall?
Ms Robinson: One of the few things
we welcome about the LINk arrangement is the extension into social
services. We were doing a survey into delayed discharge and we
discovered that 60% of the delay discharges were due to problems
with social services not being able to find places for elderly
people, but we simply hit a brick wall with social services—partly
because they are so understaffed and they have a lot of part-time
staff and it is very difficult to find anyone to answer our questions,
but basically we have no jurisdiction with social services and
we had to abandon the project because we had satisfied ourselves
that the hospital was doing everything it could do; it was simply
a problem at the other end which we could not do anything about.
Mr Silverman: When we have run
into a brick wall, and may I say an understandable one, if you
are faced with executive directors who have financial imperatives,
and they are in a bit of a blind panic about meeting them, then
it is not surprising that they stonewall like crazy. For example,
last autumn the Southwark Primary Care Trust introduced what it
called a minimum waiting time initiative, which I think happened
in other parts of the country at the time when there was capacity
in the NHS service to carry out operations, they said to Guy's
and St Thomas': "We know you can do this in four months but
you are not to do it sooner than six months". We made inquiries
as to whether that was OK and we were told there was nothing stopping
them doing that within the legislation and they were meeting government
targets, and no matter how we threw ourselves at that particular
problem shall we say ears were not listening—except in one
respect. There was going to be a period over Christmas when there
was going to be almost like a holiday and they realised that,
in fact, on our say-so this was a bad thing and changed it but
the whole principle of this initiative maintained. I think it
is fair to say that at the present time good change in the Health
Service is planned which we want to support, for example, the
increased work in primary care at the expense of acute care, is
likely to be damaged because it is being mixed up with the financial
imperatives, and instead of saying: "This is good for you
for these reasons", we as a forum are saying to the Trust:
"Look, why not put down all the good things that come from
this change so we can help you to convince the public that these
are good things. Separate out the financial matters", but
unfortunately it is going over to the public as: "We are
in debt, we must save money and we are going to do these things",
and it is hardly surprising if the public are going to cock a
deaf ear and not believe that there are real benefits to come
from the changes.
Q221 Mike Penning: Mrs Beesley? Any
disappointments?
Mrs Beesley: Yes. Palliative care.
In Great Yarmouth we had no palliative care facilities. It was
the worst in the Eastern Region. I managed to get a palliative
care bed through a lot of nagging, I am sorry to say, in the local
GP unit. That was my biggest sadness. Because of budget constraints
Great Yarmouth had £3.5 million taken from them last year
and they are now up to £9 million yesterday at the board
meeting, so money is a very big factor and my concern is it will
affect patient care. Palliative care and end of life is something
that I am very passionate about, I believe it is not your quantity
of life but your quality, and people should be able to get that
towards the end of any illness, and not just cancer. There is
motor neurone, MS, Parkinson's—it is very important, and
the restraints that are put on PCT to not being able to put money
into these services is a disaster, I think, when you have people
having to die on acute hospital wards. So that is my only obstacle.
Otherwise the PCT has done everything we have asked them to and
I have been very grateful for that.
Q222 Mr Campbell: Sharon Grant said
last week that most problems with forum support organisations
have been resolved. Would that be right?
Ms Robinson: We do not have a
problem with our forum support organisation. We find them very
helpful.
Q223 Mr Campbell: But have there
been any problems in the past?
Mr Silverman: We did have problems.
We had one organisation which, quite frankly, did not support
us at all and was more concerned, it seemed to us, to use the
forum network to sponsor its one series of seminars and whatever.
Now they were changed in the last round and we are now serviced
by an organisation called the Shaw Trust. Again, and this is very
important, it depends upon who you get as your support officer
because the first support officer we had, quite frankly, did not
deliver what he was supposed to, we complained, there was a change
and we have a brilliant service now within the resources that
are available. Our allowance in time is roughly about 12 hours
a week, and if you want to be a proactive forum engaged on a lot
of fronts, as we are rapidly beginning to be, then it can be overwhelming.
There just is not enough support resource to do the job properly.
Ms Robinson: I would agree with
that.
Mr Silverman: It comes back to
the point I made earlier which is that, if PPI is going to take
place, it does not matter whether it is LINks or whether it is
forums, there has to be adequate financial resource to back it
up to allow it to happen, to make the public aware of it, and
the more the public become aware of it and the more things come
inwards, the more support you need in order to go outwards.
Q224 Mr Campbell: It is like everything
else that is set up, it always takes time—in fact, years
in some cases. It is going to take years before this new government
LINks organisation gets set in cement and works.
Mr Silverman: It is going to be
another period of absolute uncertainty as to what it is all about,
and to some extent at least there is something happening now.
In our evidence we have suggested there should be a return to
what was, I believe, a proposal by the Department of Health in
2004, which is that each new organisation should be tied to a
Primary Care Trust—well, that has been abandoned. Now, if
you have a group of people, virtual or otherwise, thousands or
a small group—whatever it is because we do not know—sitting
around a table raising issues, doing research and then writing
letters to commissioners, three months later when the replies
come back in people have forgotten what the original question
was. There is no substitute for being involved and engaged with
a Primary Care Trust and I know the Department of Health are saying
that they cannot follow the patient journey. Well, what are commissioners
about if you are not following the patient journey? The Primary
Care Trust is going to be commissioning right across the spectrum,
and it is a golden opportunity with commissioning to allow public
and patient involvement to engage with the Primary Care Trust
at the point commissioning takes place, not writing to them arm's
length, at third hand.
Ms Robinson: I do think this business
of change with LINks is going to make it very difficult for the
forum support organisations. They are supposed to become a host
organisation; they have only had a three-year contract. They are
on six-month renewable contracts at the moment; they all fear
for their jobs, and any new organisation is going to start again
from scratch and is wasting so much experience and so much good
practice that I cannot see that there is going to be a smooth
transition, and I think it is very hard on the forum support organisations
who have been doing a good job within, as you say, terrible financial
constraints.
Q225 Mr Campbell: That is what I
wanted to hear. Regarding the host organisations, is there enough
quality in those?
Mrs Beesley: We had the same support
organisation as Barry Silverman, and the reason why I am a past
chair is I could not stand it any longer. The support was not
there. We did our GP survey ourselves. The lack of support that
we had was unacceptable. But in neighbouring Norfolk, when I was
asked to go over there to present our survey to them, the support
just bowled me over. We were a small group but when you asked
for work to be done, weeks later we were still nagging. You asked
for minutes to be done so you could check them; you ask again
and again. Inexperienced staff I found was the problem, the inexperience
of the FSO's assistant—a lovely person but had no knowledge
and had not done anything like this before. When it comes to LINks
I feel very strongly that not all PPI is bad; there is some good
and some wonderful work being done out there but before they dismantle
it and start LINks, whatever is going to happen, someone should
really look at what has been done that is good, and I hope you
people will be able to do this, and put that into LINks. I believe
LINks could be good because you are going wider and you are going
to be looking at different sectors, more of the voluntary sector.
My only worry is it could be too big and not manageable. If you
take a county and bring all of the voluntary sector in, it could
be unmanageable. I hope it is not but that is my biggest concern.
Q226 Mr Campbell: It is a danger?
Mrs Beesley: It is a danger.
Q227 Chairman: Do you have any view
about this issue of hosts, Penny and Barry? About who it could
be? It could be a local charity.
Ms Robinson: It is not so much
who it could be as how they are going to function. There does
not seem to be any real grip of the governance arrangements. We
asked who they are accountable to and they said: "We are
all accountable to all the members of the PCT". How does
that work in practice? It really is very difficult for anyone
to see, if it is going to involve thousands of people, how it
is going to be organised. It will put a greater burden on the
support organisation than there is at the moment. The wider you
go I think the more disseminated, dissipated, the whole effort
is going to be and there is not going to be the room for the close
focus that is the only thing that produces results. When they
talk about involving thousands of people, when we started as a
forum we contacted all sorts of organisations, but they have their
special interests and a narrow remit. They were not particularly
interested in doing anything with us, and I cannot see how that
is really going to change.
Mr Silverman: In essence that
is the essential argument. If people active now knew what LINks
was intended to be, because there are so many descriptions of
it, then you might be able to form a view as to how it could be
made to work and make positive suggestions, but because that does
not exist it is difficult. Now, we know that local authorities
are to go out and obtain a so-called host organisation which is
going to help to form the new organisation. I mentioned in the
present support arrangements a Shaw Trust who in our area alone
have about 35 different forums to support, so they have the economy
of scale and a senior management team with the quality you would
expect from a volume of work. Now, if each local authority is
going to employ some separate organisation so that there is no
central organisation, it is difficult to imagine, for example,
twenty local authorities getting together saying: "We will,
in fact, do one joint tender", so there are going to be lots
of little local organisations which, by definition, because of
the amount of money that is involved in one organisation, will
be of relatively low quality. So there is great uncertainty out
there and I would say, with respect, that the question has to
be asked—and I hope you, ladies and gentlemen, will ask
it—why? If you look at the evidence put in front of you,
particularly the evidence from the Commission, when you look at
the Bill it does not seem to matter where you look but some part
of the powers that exist at present are being chipped away. Regulations
are promised to put some of these powers back but we do not know
what those are going to be. We do not know for certain whether
the present ability to look at a provider in the private sector
will exist. What about questions of commercial confidentiality
when you ask for information? Indeed, would it be possible for
a foundation trust to refuse to provide information on the grounds
that it was commercially confidential? Whatever the new system
is going to be can it actually deliver the information that should
be delivered and which the legislature described should be delivered?
Is it going to work, because it is so amorphous and vague? It
is all very well saying: "We want this to develop as local
people want it to be" but this kind of thing just does not
happen. There has to be a framework in which local people can
make it work, and there has to be some regional and national engagement
between these organisations so that a message coming out in one
place is joined together with the same message coming out from
other places.
Q228 Charlotte Atkins: You clearly
are concerned about the transition over to LINks. Obviously Barry
has already indicated to some extent what you think would make
LINks more effective. Can I give the others the opportunity to
say what they think the key factors are which would make LINks
effective?
Ms Robinson: I am here representing
other forums as well in Bristol but at a meeting beforehand I
think we agreed that really we cannot see what is wrong with the
present set-up with the extension into social services, or the
idea that perhaps forums would join together. We do not want to
lose our expertise with our hospital; we have tried to engage
wider groups and we do not see how it is going to happen. I do
not think I have any very positive suggestions to offer because
I feel that the present system, if it was encouraged and developed
and better resourced, if it just widened its remit a little, would
be far more successful than dismantling everything and starting
again from scratch.
Q229 Charlotte Atkins: You said earlier
that members of your group were leaving, or wanting to, and you
were persuading them to stay, despite the fact you said you had
a very good relationship with the hospital and the hospital said
they wanted your group to continue, come what may?
Ms Robinson: We are worried about
the question of financial independence. When the hospital said:
"We would be quite happy to fund you to continue" we
threw up our hands in horror and said: "We would not be independent
if you were to fund us", but we are waiting to see what is
happening about LINks before we maybe opt out or maybe do something
separate with the hospital. But the question of funding is crucial
as far as we are concerned.
Q230 Charlotte Atkins: Clearly funding
has been a key issue for you in your evidence. How much money
do you think it would take and how can you ensure value for money?
Ms Robinson: I worry about money
being ring-fenced. I think it should be if it goes via the local
authority. I am not a financial person but I think we certainly
need some kind of budget for advertising because the whole thing
is simply not going to work if people do not know we exist.
Q231 Charlotte Atkins: Advertising
to encourage people to come forward?
Ms Robinson: Yes—well, national
press. Whatever. Nobody knows what forums are and if they do not
what forums are after three years how are they going to know what
LINks are when they are first set up?
Q232 Charlotte Atkins: So what would
the purpose of the advertising be? Just to get yourself recognition?
Ms Robinson: I think so, yes.
Also, we have some difficulty with our local press who tend to
only like bad stories about the Health Service and a forum doing
a little bit of good work is not news in the same way as a postponed
operation or some kind of hospital scandal is.
Q233 Charlotte Atkins: You have noticed!
Ms Robinson: Yes. We have noticed!
Mrs Beesley: I believe if the
CPPIH was cut down to a minimum, at least they are theoretically
supposed to be independent, and I say that with tongue in cheek,
and if the PPIF had a broader remit to involve social services
and especially to get more people in, that is the 64,000-dollar
question in that you can lead a horse to water but you cannot
make it drink, and you really have to make them want to do this,
and the support is very important. If the PPIF stays as it is
or is with LINks, the key is the support not only to the PPIF
forum but the next body up. If you have LINks and it is going
to be County Council led, and many years ago I was a County Councillor
so I know they top slice, they will top slice if their budget
is a bit short, I am positive of it, hand on heart. You cannot
take something to Overview and Scrutiny when all they do is send
it to a working party, I watched Norfolk Overview and Scrutiny
in the last three years and it goes to working parties and it
never comes back. It is only the last year since we have had a
new chairman that the PPI or any member of the public can actually
speak. Before you used to sit there for three hours and nobody
was allowed to speak, so there are lots things that have really
to be put right—whether it is LINks or a continuation of
the PPIF. I can only speak for my own area but I would like to
see LINks but with a bit of the PPIF. I am sitting on the fence,
to be quite honest, because I would like to see a much broader
canvas of consultation with the public, but it has so many pitfalls.
I do not envy the person who has to sit and make the final decision.
Mr Silverman: It does not matter
what the organisation is called, whether it is a forum or LINks.
As I stressed, and as the Department of Health once thought too,
that organisation needs to be tied to the commissioners which
is going to be the Primary Care Trust. Just addressing the question
of social services, I am a trustee of a local charity and 80%
of our funding comes from public sector commissioning. Quite frankly,
as a member of a LINks, if I was involved I would be extremely
hesitant about challenging the commissioners, and I think there
is going to be some real conflict of interest in a situation with
local charities. I am sure all of you have seen a report published
about what has happened to local charities, particularly smaller
ones, and how trustees have lost control and have to do what their
funders want, and I promise you, if you are sitting on a LINks,
you are not going to be upsetting your commissioner.
Q234 Dr Naysmith: I wanted to ask
questions on the role of commissioning because it is quite clear
that the Government thinks that should be an important part of
the LINks agenda, and you sound as if you have some reservations
about it, Barry. In a way it could be a way for the public and
patients to influence more than anything else, if you are actually
involved in the process of commissioning, buying the service and
looking at the quality right at the start, so why is it you feel
your reservations?
Mr Silverman: I only have reservations
about local charities being involved with LINks if they are, in
fact, themselves providers and, if they are small charities, highly
dependent on the commissioners. But I take your point absolutely,
and this is what Southwark Patients Forum said in its evidence,
that there is no substitute for working directly with the commissioners.
As I said, one of my members sits with the GPs on the practice-based
commissioning committee, so he is there right at the very beginning
to engage in the controversies, and they are engaged at the present
time in Southwark, as I am sure in other places, in demand management.
There is an attempt from what I have seen of the evidence, quite
rightly, to weed out a certain amount of consultant referrals,
where people have been going to hospital year after year after
year to be told: "Yes, your operation of 10 years ago is
OK", so many things can be done and that is being rooted
out. To the extent any of it is going to impact badly on a patient
we have a forum member sitting alongside the doctor who can raise
it at that moment and not when it becomes a published fact.
Q235 Dr Naysmith: So you have positive
good experiences of being involved in commissioning?
Mr Silverman: Yes. Wherever a
commission is involved we can have a member. For example, we have
a member on the Public Health Delivery Committee to make the public
health objectives work. Wherever there is a committee working
and making it happen, if we wanted a member on that committee
there would be no obstacle under our new arrangement with the
trust having that.
Q236 Dr Naysmith: So really the reservations
you have are just about if there were people involved in the LINk
who had a conflict of interest, basically?
Mr Silverman: Yes. Again, as we
said in our evidence, it is important first to have a group of
people who are interested and prepared to do study and subject
themselves to training, that is very important. Secondly, you
have to give them freedom to act, and the proposal I put to our
forum which was adopted was that each member takes responsibility
for a certain number of briefs and studies them, and is accountable
to the rest of the forum for what he does in that area. That allows
us to go across the breadth of the PCT and deep down into it because
all of us cannot go, for example, to all the meetings of the Nursing
Improvement Committee or the Urgent Care Committee, or whatever.
I go to the Governance Committee which brings together a whole
range of other committees and their reports so I can not only
read those reports but I can join in the discussion at the Governance
Committee to the extent it impacts on patients. Actually, I am
not restricted at all but I try to make my points from the patient's
point of view. So it is involvement with a particular trust that
is important at all levels of its operation, not a group of people
sitting in the middle writing letters and asking questions and
doing research.
Q237 Dr Naysmith: Could I just welcome
Penny to the Committee? She represents the various PPIs that I
get involved with now and again and I know everything she said
is absolutely accurate and they do some very good things, and
I agree with her when she says that it is a great pity that more
people are not involved and that the public do not know a bit
more about what we are doing, but that is only by way of a beginning
and you can say something in answer to my real question, which
is what do you think about getting involved in commissioning,
and have you got any experience of it?
Ms Robinson: Because my experience
lies with the hospital trust it is a little bit different. We
can influence things but there is this theme that we just need
a wider involvement. Obviously it would make sense to start at
the lowest level and work up, I mean from the patient at the PCT
level, and I realise that things are changing. The problem with
volunteers is that only certain sections of the public have the
time and the energy to devote to this kind of work, and it does
end up with people who are retired, and I hope this does not give
us a narrow view. We tend to focus on older people but then so
do hospitals, so we represent quite a large amount of the population.
But I do think with these new LINks the assumption that they are
going to be thousands of people pining to join in is optimistic,
because in my experience people only want to work with health
if they have had very good or bad experiences. If you are an ordinary
member of the public you do not want to know about it because
if you have been in hospital, unless it was a tremendous or a
horrendous experience, you want to forget about it and get on
with your life.
Q238 Dr Naysmith: But the point about
this and LINks is that you will collect the patient's experiences
and feed them into the commissioning process.
Ms Robinson: As we do at the moment,
I think; this is what patients' forums do. How much of it we can
do depends on the funding and the numbers involved, I think.
Mrs Beesley: We were a PCT/PPI
forum and we had people on practice-based commissioning, and it
was a great help because we could put the patient's perspective
forward. We also did lots of other committees linked into the
hospital, like coronary heart disease, strokes, the older people
network—a lot of other committees that were linked into
the PCT, and we encouraged people from the Disability Forum and
people from the MS Society to join our forum. Also Social Services
had a youth group in Great Yarmouth at the Great Yarmouth College,
and we just persuaded two members to join us but it did not get
off the ground because of the reconfiguration, and it took us
over a year of coaxing and cajoling because, as Penny said, we
are older than we look. I am retired and working harder now than
I did before, but it is important to try to encourage the PPI
or a lay member of the public to go on to these commissioning
boards.
Q239 Dr Naysmith: So you are suggesting
you are a little bit in front of the game? You are doing what
LINks is supposed to be doing?
Mrs Beesley: Yes.
Ms Robinson: Yes.
Mrs Beesley: It is like re-inventing
a wheel with more spokes, if you can understand what I mean. LINks,
if you really look holistically over the PPIfs, it is there but
it needs just a little bit more added to it.
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