Examination of Witnesses (Questions 1-19)
PROFESSOR CELIA
DAVIES, DR
ED MAYO
AND DR
JONATHAN TRITTER
1 FEBRUARY 2007
Q1 Chairman: Good morning. I welcome
you to the first session of our inquiry into patient and public
involvement in the National Health Service. For the sake of the
record, perhaps you would introduce yourselves and say what positions
you hold.
Dr Tritter: I am Jonathan Tritter,
chief executive of the NHS Centre for Involvement.
Professor Davies: I am Celia Davies
and I am here in my capacity as an academic and social science
researcher on public involvement. I carried out an independent
evaluation of the Citizens Council of NICE and that is the specific
subject on which I have submitted evidence. I have a previous
piece of work that looks at lay members of regulatory bodies that
may be relevant. I am visiting professor at the LSE having formally
retired from the Open University. In some senses I have changed
sides. In an executive capacity I am director of the Research
for Patient Benefit programme which is the regional research-commissioning
part of the NHS's reorganised research and development activities.
I am beginning to experience `doing it' rather than researching
and talking about PPI, but it is at a very early stage.
Dr Mayo: I am Ed Mayo, chief executive
of the National Consumer Council.
Q2 Chairman: Thank you very much
for attending this morning and also for the written evidence.
It is such a large quantity that it will probably take us until
the middle of next week to publish it. This is normally done very
early on, but the amount of material has given us some logistical
problems. Perhaps I may ask an opening question of all of you.
All the evidence to this inquiry has indicated that the benefits
of PPI include: resolving the democratic deficit, improving services,
increasing accountability and ownership, and empowering communities.
But the department's evidence mentions only improved services.
What do you think it is trying to achieve through PPI, and will
it do so through LINks?
Dr Tritter: I think that LINks
are a response to a recognition that PPI forums were not functioning
as effectively as had been hoped. The opportunity that LINks offer
is to bring together existing expertise within a broader community
as they are local authority-based rather than NHS trust-based.
It also provides a different opportunity because it links health
and social care. In that sense it is about improving the transition
and integration of those services potentially from the perspective
of local communities. It also has the potential to bring to bear
much more clearly the expertise of local voluntary and community
organisations on issues around the prioritisation and delivery
of services.
Professor Davies: My answer comes
from a little further out. One of the most important things for
the Committee to consider is how the context of patient and public
involvement has changed. It is almost compulsory for every department,
not just the Department of Health. One of the most useful things
that can be done, and often is not done, is to spell out actual
and potential advantages. In my evidence I tried to suggest to
you that there were perhaps three or four of them. The first is
to broaden the range of options under consideration by bringing
into the arena a wider set of people. Another is to try to generate
really novel solutions to difficult health policy delivery questions.
The third one is to enhance legitimacy. There is always the suspicion
that it is being done as a cosmetic exercise and spin. I believe
there is something very positive there, because it is about listening
to concerns and likely objections and being able to rehearse those
in the rationale for the steps that are being taken. The fourth
matter is the need to facilitate social inclusion, solidarity
and system growth. I believe that if it is done correctly it can
do that. Speaking in an individual capacity, I am not sure whether
the department is taking on board all of those matters. What it
must do is try to improve services. Those are the ways that one
does it, and they need to be spelt out and thought about.
Dr Mayo: One of the privileges
of my job at the National Consumer Council, which is in contact
with people as consumers but also as public service users up and
down the country, is to be able to listen to people's experiences
and concerns. Recently, I recall sitting in on a meeting where
people spoke about their experience of the NHS. Every member of
the group who had been selected had had a life-threatening incident
that had brought them into the hands of the NHS. The passion was
palpable. But it went both ways in that those whose experience
of the NHS had gone well were passionately supportive; where it
had gone wrong they talked about having no dignity or being treated
as second class. There is real concern and passion for the NHS.
I believe that that was reflected in the participative process
of the out-of-hospital care White Paper. In answering your question
I am drawing on some of the comments that people made in those
citizens forums, particularly in Birmingham. I noted that one
person said, "We use and pay for these services and we should
have a say." That struck a chord with a lot of people; but
they also wanted it to be done well. Will people respond? Another
question was whether or not it would make a difference. A third
was that it was inclusive so it should not be the same old faces.
If I tried to address that passion and those answers in responding
to your initial question, I would say that with patient and public
involvement there is a danger of having an overloaded agenda.
I am not very good at growing tomato plants, but I have just about
worked out that something is needed to hold them up; otherwise,
they can fall one way or the other when the tomatoes reach a certain
size. I hope that you will excuse the analogy. If we have four
goals for involvement the danger is that we achieve none of them.
In particular, accountability is one matter that we have not got
to the bottom of, because, although we try to find out the answer
by research, it is difficult to know what kind of accountability
people want in relation to the NHS. Is it the accountability of
a service provider, like Tesco or someone, that is just responsive
to what people want? Is it accountability that is in some way
mutual and engages them as partners in health, or is it some democratic
process that has parliamentary or local councillor scrutiny? Those
are very different notions of accountability, and I have never
heard very clear answers either from the patients we talk to or
others in this field. In view of that I believe that improving
the quality of services is the most important single goal, because
improved services will engage people where they need to be engaged
and it will give people a say in it. If there is one measure of
whether listening to patients and the public makes sense I think
it is whether or not it improves services. In that case, therefore,
I agree with what the department has said.
Q3 Chairman: In evidence the department
has relied on the findings of the Picker Institute which found
that in some areas individual patients did not feel involved in
their care: they did not feel involved in treatment decisions
and were not given information about their condition and medication.
In those circumstances, it is hard to see how LINks will help
that situation, other than that you all seem to say that the general
improvement of services should help. Do you believe that is a
little non-specific?
Dr Tritter: I believe that that
is precisely because LINks are not designed with that aim; they
are designed to help ensure that local people and community organisations
have scope to input into the evaluation and development of services.
That is a very different kind of involvement from individual involvement
in treatment decision-making. I believe that we need to differentiate
between different forms of patient and public involvement: individual
treatment decision-making, service evaluation, service development,
involvement in research and involvement in teaching or training.
They are different categories of patient and public involvement,
and it seems to me that primarily LINks are about involvement
in relation to service evaluation and development.
Q4 Chairman: The Picker Institute
found that patients wanted involvement which was about their care
and what happened to them in the health service. Is that a feasible
option?
Dr Tritter: I think that increasing
pressure for and attention given to holistic or patient-centred
care has been around for quite a long time. From my understanding,
the perception of the Picker Institute is that increasing the
opportunities for patients to have a greater say about their individual
treatment decisions will in turn lead to greater opportunities
for patients and the public to have a say about service evaluation
and delivery. I believe that in her writing Professor Angela Coulter
suggests that there is a causal relationship that starts on the
basis of individual treatment and decision-making. I do not believe
that that causality exists, although increasing opportunities
in all these arenas is probably a good thing.
Professor Davies: One of the most
important things to consider is the different dimensions of patient
and public involvement. All sorts of things hide under a general
umbrella. For me, one of the fundamental distinctions is between
involving people as citizens in hard choice decisions, maybe in
commissioning, in the policy process of government and, at the
other end, involving them as service users who have had the experience
and can feed something back. Many people think that it is easier
to do the latter. People can input their experience. We have had
upwards of 15 years of initiatives at local general practice level
in involving people; we have had organised service user groups
making inputs into policies around specific diseases. I suspect
that one feature of your enormous volume of evidence is that a
lot of people are trying to create categories of different levels
and different kinds of involvement. There is local and national
involvement; there is involvement as patients and as citizens,
and different things go on in each category. The emotional charge
to which Dr Mayo referred does arise when people have had either
a very painful or very good experience. I believe that in policy
communities at the moment it is quite hard to deal with that level
of emotion. People are rather afraid of it. In some of the arenas
that I am looking at the most instructive contributions come from
people who have had an experience like that. They have fed it
back at the right level and are now asking whether they can intervene
somewhere else, look at the broader policy and bring to bear their
experience up a level of generality and look at how the services
are designed in the first place. I think it is helpful to look
at different levels and not try to push it all into one package.
Dr Mayo: I agree with both of
those contributions. The implication is that one needs involvement
at every stage of servicedesign, delivery and evaluationbut
there is also a point about the relationship between health professionals
and individual patients and members of the public in a very intimate
setting. Probably all of us have a sense of the qualities that
make for a good doctor or nurse: listening skills and the ability
to relate to patient circumstances and needs. Personal care is
a key factor. I think that much of the responsibility for that
needs to start with health professionals who are part and parcel
of delivering a modern service that is critical to people's lives.
We have to see patient and public involvement not as the way of
delivering it, because responsibility needs to rest primarily
on providers, but a way of giving them information and feedback
to enable them to do that at certain points of the cycle.
Q5 Mr Amess: Dr Mayo, I very much
agree with your earlier remarks about tomato plants and Tesco.
We are only too well aware from what we are being told that trusts
are supposed to be much more accountable to local people, but
there appear to be enormous pressures to meet national targets.
How do the witnesses believe that these apparent conflicts will
somehow come together and work their way through?
Dr Mayo: I am never clear where
with the NHS rights stop and responsibilities start as citizens.
We have an idea of the NHS which I believe is a fantastic founding
myth, namely that it is free at the point of need. It is not always
so. If we get knocked over in the street it will pick us up. That
is a fundamental benefit to our wellbeing. But what the NHS will
or will not cover varies from area to area. We find it difficult
to deal with that. We do not know whether it is a national or
local service. One of the reasons it is difficult to deal with
is because these discussions are not really held in the open.
Commissioning decisions and the nonsense, if I may say so, of
the current prescription charging system, which neither delivers
on financial gain nor on any intelligent health approach, are
symptomatic of the fact that decisions are being taken behind
closed doors. Whether those are national or local closed doors
I do not know, but I believe that as part of the move forward
in an age where there will be increasing demands on the NHS for
new drugswe will not always have the kind of fiscal settlement
that we have had over recent yearsit is all the more important
to open up these decisions. I have probably answered only a quarter
of your question, but whether it is local or national it is about
opening up these decisions so there is clarity about who has responsibility
for what.
Professor Davies: I think that
it opens up so much that it is hard to know where to start. The
biggest issue related to your question is about how our sense
of democracy is now changing. Over the past decade we have made
amazing transitions. Stakeholders were part of the policy process
in setting the NHS plan, for example. Many of the organised consumer
and patient groups were involved in that process. We have engaged
with varying results over the past few years in exercises, for
example a citizens' jury on this and a people's panel on that.
Somehow we are expanding notions of participation and democracy
and there is an open question about the joins between that and
old-fashioned electoral democracy, if I may call it that. Some
people take the line that when one has these participatory initiatives
the results should be compelling and binding. I do not take that
view. I believe that they should be part of a debate, and there
are people who are elected and accountablethose sitting
in this roomwho have to take a final decision. One of the
interesting matters from the citizens' council that we studied
in such depth was exactly that view. We found that people were
really keen to understand what the issues were and the hard choices
that the NHS faced. They wanted to be assured that they had been
heard; they wanted to see their arguments in the final document.
They did not want to take the final decision; they wanted it to
be taken elsewhere. I believe that there is an important issue
about expanding our idea of accountability and giving good accounts
of how decisions have been reached and the different components
that come into it. Patient and public involvement is one component.
We need to draw a picture of how these things fit together. I
do not think we have that picture at the moment.
Dr Tritter: I agree with many
of the things that have been said by the previous speakers. It
is worth suggesting that often national targets do not define
processes but outcomes, and we want to ensure that the processes
to achieve those targets are shaped in relation to the priorities
and experiences of patients and the public. That is a key driver.
For example, commissioning decisions made at local level have
to take into account national targets, local priorities, existing
epidemiological evidence and also different communities of interest.
It is the balancing of those different tensions which makes those
decisions so difficult. Greater transparency will help to justify
and provide an account of how those decisions are reached.
Q6 Mr Amess: Another point related
to this is A&E units. When I was Member of Parliament for
Basildon the health manager suddenly and without any warning recommended
that the A&E unit be closed. I will not bore the Committee
with the story of what then happened, but people power happened
big time. It is very interesting to see what is going on now.
To cut a very long story short, with one day to go I stopped the
closure of that A&E unit. There were mass demonstrations.
It was an extraordinary story. I heard Professor Davies' earlier
remark about the role of elected representatives. I genuinely
do not believe that nowadays it is quite so easy for Members of
Parliament to achieve that outcome, but a lot of this is happening
at the moment. We are told that these closures will not just save
money but make the service better. Given that nothing will change
in terms of people protesting about itat Prime Minister's
Questions yesterday there were three questions which centred on
these issueshow do you see this working now? Do you believe
that the people should be listened to?
Professor Davies: I believe that
the issue is a broader one and concerns the reconfiguration of
services and all the present press coverage. That leads me to
think about what the vision of a better process may be in future.
I come back to my Citizens Council experience. The deal behind
that experiment was the question of whether one could create an
informed public around a particular topic with the privilege in
a sense of hearing all points of view from a diverse set of people
who were then able to debate it and understand the various positions.
That is a lovely deliberative ideal, but it is hard to reach and
costs a lot of resources to try to keep it going. If it can work
one will not have the press and media winding up an issue but
the viewpoints of all the stakeholders, professional providers,
management and the local community, can be balanced in debate.
If one can create forums like that one will have a much better
quality of debate about what should happen rather than a knee-jerk
defence of an existing facility. That is where we have reached
under the arrangements for consultation. Can we broaden and develop
them? It seems to me that one of the matters we need to develop
is the notion of public management. It has always defeated me
that there is not a stronger notion that a key part of the business
of a manager in the public sector is to understand his or her
public. The first knee-jerk reaction should be to go out and do
that and bring into the room different viewpoints. I do not believe
we do that at the moment and we could do a lot better, but it
is a long way from where we are. Maybe I am the sole person at
this table who can say that very often on paper there is a lot
of apparent support for public involvement but behind it there
are a good many worried and threatened people who say, "How
can we possibly do this? We have these targets and timetables.
We are not convinced." People are not really informed about
this. We have to break through that and bring it out into the
open and ask how an informed public can be created so that those
viewpoints are brought into the room. There are examples of how
it can be done.
Dr Mayo: I would give a somewhat
blunt answer. First, we accept that there are areas of very good
practice locally, but broadly there is has been an inadequate,
ineffective job done in terms of involving the public over the
previous period. If that had been done better and right it would
have been easier to get the public on side with some of the reconfigurations
that we see going on. I am quite critical of what we have seen.
Second, in many areas, such as accident and emergency, I hear
two discussions, although I am certainly no expert on acute services.
One is the professional view that it is a nuisance to crack down
on accident and emergency because there are all kinds of difficulties.
But the public quite like it. I do not have any research evidence
from our own contact with patients to back this, but accident
and emergency is warm; there are toys for the children and you
know that you will be seen. There is a mismatch between the professional
and public view. I think that there has been a mismatch in the
past around issues like cleanliness and the continuation of hospitals
themselves. By and large, I would say that the public has got
it right. The public has often been ahead of professionals on
these issues. I am sure that that is a somewhat "tabloid"
remark to make, but there is value in listening to the public
early and doing it right and sharing the trade-offs with them
because I think you get sense out of them.
Dr Tritter: The issue of reconfiguration
and the requirement to consult is one that sits in the Health
and Social Care Act 2001. How it has been implemented has varied
hugely, and certainly in some places there has been a sense that
there was consultation after decisions had been taken. I do not
believe that that is necessarily how it has to be. If consultation
is done properly it should be about identifying those key sensitivities
from the local community around different kinds of plans or scenarios
for changing provision. One of the ways to make it better is to
develop an integrated approach to systemic patient and public
involvement within NHS organisations. This means that if on an
ongoing basis NHS organisations engage with people on strategic
decision-making, reconfiguration does not come as a huge surprise
but is part of what has been on the table in the discussions from
the beginning. I believe that it is the surprise which creates
much of the difficulty. That takes me in a sense to some of the
points made by Professor Davies. Involving patients and the public
is hugely scary and threatening for many members of the NHS, in
part because the constraint or space within which those decisions
are made is rarely made explicit. I refer to the constraints on
decision-making, the definition of the roles of participants and
the opportunities for outcomes and changes. If those are made
explicit from the beginning one creates a safe place for those
kinds of deliberations and the outcome becomes much more acceptable
to all of the parties.
Q7 Charlotte Atkins: The Government
Bill very much focuses on PPI in local decision-making, but is
there enough of such involvement in regional and Department of
Health decisions?
Professor Davies: I think that
there are a lot of fragmented efforts. There are initiatives about
which people become enormously enthusiastic. What we do not have
is a strategy. At one stage, maybe back in 1999-2000, local government
was doing a great deal in terms of consulting the public with
all sorts of different initiatives. Professor John Stewart came
to a meeting of the Public Accounts Committee and was asked about
it. He said that that was all very fine but he did not understand
what was happening at central government level: there did not
seem to be a strategy. I think that there still is not a clear
strategy or map. We talked earlier about involvement at all levels.
To build a picture of it that the public understands so it can
make choices about where it may become involved is quite important.
We do not have it at the moment. There is perhaps over-enthusiasm
and under-thinking, as it were, about where to go and develop
it.
Q8 Charlotte Atkins: For instance,
if we take the example of the reconfiguration of Primary Care
Trusts, on which this Committee did some work, it is clear that
in some areas there were huge campaigns and public involvement
in wanting to keep PCTs relatively local. In my area of Staffordshire
the Strategic Health Authority completely ignored the local response.
It went through a charade where it appeared to consider the overwhelming
public response about keeping the local PCT and then ruled against
it and went for its original thoughts. That involved the present
chief executive of the NHS. Subsequently, ministers overturned
that decision. It seems to be a bizarre situation where if one
has consultation and loads of people respond at regional level
the Strategic Health Authority completely ignores it and says
that it does not really matter and it knows best.
Professor Davies: That gives consultation
a really bad name, and people then start to say it is all cosmetic
anyway and it does not work. There is a potential negative spiral
on both sides here in situations like that. Those within the service
who feel that they absolutely must run the consultation are very
doubtful about what they can do with it. As Dr Tritter said, they
cannot see the space where they can act and so they close it down
fast. It seems to me that we have to make a real step change from
old-fashioned cosmetic kinds of consultation to something much
more robust and engaging where people can take ownership of it.
To do that the things that you are talking about are in a sense
too late. Where is the pattern of involvement as a result of bringing
in a set of people in a community who understand the array of
available health services and can see the choices so that it does
not become a question of whether or not to close the A&E department
but it is now known that what people want is access at particular
points? One is NHS Direct; one is walk-in centres; and one is
A&E. Here is the map for the local area showing where all
these services are. One then has a discussion about what should
be where and how the resources can be used. It is a much more
proactive way to deal with it and sometimes it involves a sea
change on the part of the NHS. It is also about local authorities
and the health service which are very different cultures. One
has elected representatives and is working through all the time
how matters will play in the constituencies. The NHS is a very
different animal; it is organised top down with strong professional
input. NHS people have to make a bigger change when thinking of
real accountability and involvement than local authorities, and
we also see some of that in the present debate.
Dr Tritter: There are significant
examples of consultation by central government. One can think
about the Department of Health consultation document Stronger
Local Voices which generated a huge number of responses. It
seems to me that how they were acted upon is a good example of
how consultation can occur. I believe that the reconfigured Strategic
Health Authorities have a significant challenge. Perhaps many
of them have not fully recognised that they have legal responsibilities
under the legislation for involvement and engagement. That has
not yet been fully worked out. One of the things that the NHS
Centre has to do is help Strategic Health Authorities to think
about their responsibilities and support and develop their capacity
to do that kind of work.
Dr Mayo: In relation to the first
question about the national level, I think there are two sides
to it in terms of patient or focus. The first is patient insight.
Does one understand people in all their diversity? Does one use
basic tools like segmentation and the like in order to be able
to build their experiences into service design? The second is
involvement. We are now beginning to see action on the first at
national level. For example, it has been very clear with public
health challenges like obesity that the NHS has a stack of data
on service use and epidemiology and disease databases, but it
does not know what is going on inside people's heads. It does
not know what it feels like to have an overweight or obese child.
I think that to move into that field has been a really positive
area where we have seen some emerging good practice through the
social marketing of public health. Therefore, insight at national
level is beginning to be acted upon. As to involvement, as a generalist
consumer body sometimes one hears that there is a play-off of
different interest groups. One will have patient groups on particular
diseases and some concerns about professionals and whether or
not their voices, not somebody else's voices, are being heard.
By and large, I think that the voluntary sector has real life
and energy when it comes to engaging in national policy-making
and yet the door is sometimes closed because of its ability to
do that. A fantastic organisation like the Long-Term Medical Conditions
Alliance operates out of a large shoebox. The organisation will
not be happy that I put that on record. The present proposal to
create a coalition of voluntary organisation to give a national
voice in order to engage in national policy-making could help.
Sometimes one needs engagement and out-and-out campaigning, and
the independence, life and ability of the voluntary sector to
say, for example, that cancer patients are not being treated with
dignity, whether it is the provision of wigs or something like
that, and this is a key part of giving life and energy to the
formula for involvement.
Q9 Charlotte Atkins: But are there
decisions which should be taken nationally and other issues that
should be decided locally, and what happens when there is a clash
between the two? Clearly, there are issues which in the end must
be decided nationally. How does one arrive at a reasonable compromise?
Dr Tritter: I believe it is called
politics. We are talking about a cash-limited system and decisions
about forms of rationing in response to different inequalities
of need and access. It is the responsibility of ministers to make
decisions about relative allocations on the basis of the evidence
before them. I emphasise that responsiveness at local level about
process can make a huge difference to the experience of meeting
those targets that may need to be set nationally. We should not
focus solely on the tensions between national and local targets
and miss the chance to say that local responsiveness around process
can be valued.
Q10 Charlotte Atkins: Basically,
however much we consult the buck stops with the secretary of state?
Dr Tritter: I believe that Parliament
has a fair role to play as well. Certainly, the method by which
Parliament engages with the department is a way of identifying
those tensions around particular decisions that are made about
which people have different opinions.
Professor Davies: I think that
we are in a moment of transition. Your question is really about
the whole organisation of the NHS and the move from a command
and control system to something that is somehow more responsive.
I do not see that as yet any of the political parties has a coherent
and developed way forward on this matter, and some of the pressure
that comes from patient and public involvement locally will perhaps
push towards this new settlement between what is decided locally
and centrally. I believe that at the moment it is up in the air.
Dr Mayo: Within the wider Bill
and subtle changes going on at local government level one sees
opportunities for connecting health and social care and reconnecting
public health with some of these other areas which I believe are
genuinely exciting. We have a whole set of local area agreements
and frameworks to be able to deal with that, but in principle
I believe that at local level it looks very encouraging. What
we do pick up sometimes in our contacts and research is a degree
of public scepticism about overturning some of these things too
often, so if there is a dynamic flux between national and localI
do not know whether it is fair to characterise the late 1990s
as a centralising period and the period since as an attempt to
localiseit is quite difficult for the public to gauge these
constant reconfigurations. The costs of those changes are also
difficult to gauge. To some extent I believe there is an interest
in reaching a stable settlement around the national and local
debate rather than a change of view from time to time.
Q11 Dr Stoate: Dr Tritter, there
is a real paradox in relation to patient choice. If one looks
at things like Choose and Book and Payments by Results, clearly
they are designed around the concept of patient choice but patient
choice has several aspects. First, it applies only to some people
and in some situations, because effectively in some parts of the
country there is no choice, particularly for groups of patients
who are less mobile. Some groups of patients will exercise less
choice than others. Conversely, the theoretical answer is that
if a lot of people exercise choice it is quite possible that some
units may run down and even close altogether because people choose
other units. The paradox is that those people who have less choice
are the ones who sometimes suffer because those with the greatest
choice have moved away and effectively made a unit unviable. What
can LINks do to try to reduce the possibility that choice may
paradoxically impact very badly on certain groups of patients?
Dr Tritter: I am not sure. As
I understand it, LINks are intended to input into commissioning
decisions and to bring local patients' and people's experience
of services to bear on what services should be commissioned. That
has an impact at a collective level on what should be provided
for the community as a whole, which is different from what individuals
may choose to do for themselves. LINks may in a sense serve as
a counterbalance to some of the individual choices being made.
LINks also have a remit to try to be as representative of diversity
as possible and bring together those who have least voice and
who may have least access to services or greatest health inequalities
so their views can be brought to bear on decisions about commissioning.
It may also serve as a counterbalance to the choices made by the
most activated individuals.
Q12 Dr Stoate: Will they have any
power to change things? If a good number of middle-class patients,
for example, vote with their feet and we are left in a situation
where those least advantaged effectively must have what is left,
are LINks able to make a meaningful difference in terms of changing
decisions, or will it be a talking shop?
Dr Tritter: The legislation sits
in Parliament, so it depends on what LINks end up being.
Q13 Dr Stoate: What would you like
LINks to be?
Dr Tritter: That is a much harder
question.
Q14 Dr Stoate: That is what you are
here for.
Dr Tritter: In view of some of
the things that have been said, LINks have the potential to bring
together that expertise, which is distinct from individuals' decisions.
Because they are framed around different kinds of collectives
within the community they bring to bear a collective view which
is different from the aggregation of individual views. I believe
that that is a huge opportunity. Apart from democratic mechanisms,
we have not had other mechanisms to gauge collective views or
understandings, particularly when such views are specific interests.
The needs of particular ethnic minority groups or categories of
people with special needs can be reflected in LINks in ways that
may not be clear or obvious in democratic mechanisms or in individual
patient choices.
Q15 Mr Campbell: Is there such a
thing as over-consultation? We see volunteers and public time
being used when sometimes they should be reserved for special
decisions rather than for going the whole hog. Should only special
decisions be made because there is over-consultation? Is it a
possibility, or is it happening?
Dr Mayo: It is a possibility.
From the feedback we get about the service user perception of
public services there is a good deal of sympathy for the idea
that doctors, nurses and also policemen and teachers are somehow
paper-worked to death, whether it be the setting of national targets
or something like that. That is the generic sense of sympathy
for the burdens upon people, and I am sure that inappropriate
consultation is part of that. There are also many examples of
consultation that is not really meant; it becomes a tick-box and
add-on. If one asks about the costs and burden of listening to
people one also thinks about the costs of not listening to them
and not designing services around people's needs. The professional
commissioning and delivery of health services must also be core;
one does it on an informed basis of people's needs. You are absolutely
right that the quality of it can vary extraordinarily. If you
took Dr Tritter out for a drink afterwards he could give you lots
of examples of well-meant involvement but not an effective way
to do it. In some senses that is why the outfit that Dr Tritter
represents has been established. It is an attempt to say that
there are lots of different ways to do involvement. Diversity
is good, but the most important aspect is that one will do different
things that one has learned from it. One learns what is good and
what is not. What I hope to see over time is a greater sense of
what is and what is not appropriate consultation.
Q16 Mr Campbell: The majority of
PPIs are seen to be good, but doing them badly would certainly
cost money and make people very angry if they got their decisions
wrong. Would it cost money in the end to do them badly?
Dr Mayo: I think that it does
cost money. There are some excellent examples of involvement in
social care, but it is quite variable. The NHS should and could
do a lot in the social care field involving people with disabilities.
If you look at the past three to four years in my view a very
significant amount of money has been put to very little use. There
are some excellent examples of PPI forums around the country.
Some are very small and are the first to talk about some of the
problems they face. If one adds up the numbers, something like
£28 million is spent on this per year. There are about 5,000
members of PPI forums, so that is approximately £5,000 plus
for each member to keep going every year. That is a lot of money.
Could we use that money more effectively? I think that that is
the promise of LINks. Involvement does take resources and we need
them. The existing health forums could probably have done a greater
job if they had had more sources, and they would be the first
to say that.
Q17 Mr Campbell: Is the bottom line
that they do more harm than good?
Dr Mayo: They are your words,
not mine, but I believe that the money spent in previous years
has been poor value for money for the involvement. If a redirection
of that money through a more diverse approach to involvement can
bring in many more people that will be money well spent. It is
like taking out insurance to make sure that the service one has
is what is actually needed. The costs of getting that wrong are
far greater. It is worth investing this money.
Q18 Mr Campbell: A lot of people
become angry when decisions have already been made. They are stuck
because the decision has already been made and they have not been
consulted. If that happens regularly the PPI dies a death.
Professor Davies: You referred
to over-consultation. It seems to me that the biggest danger is
disillusionment and scepticism and people write off the whole
exercise. It does not mean anything and therefore people return
to a situation in which they have no belief in the process. NICE's
national advertisement for its Citizens Council asked whether
people wanted to improve the NHS. NICE received initially 35,000
expressions of interest which to me is absolutely stunning. Four
thousand people followed it through by filling out application
forms and so on. It also did other things to get to hard-to-reach
groups. In our research project we talked to 30 people out of
that number who then became the Citizens Council. I was very taken
by the answers they gave. People felt that they wanted to give
something back; they had a sense of public duty. One person said,
"I know that the NHS has enormous challenges in the future.
Is there some way we can help it face those challenges?"
Others said that they wanted to test themselves, grow and stretch;
they wanted to be involved in something.
Q19 Mr Campbell: Is it not the case
that there are some decisions that can be made and others that
cannot be made? Do all the decisions have to be put in the melting
pot?
Professor Davies: The crucial
thing is that whoever hosts this exercise in consultation must
be honest and straight with people about those things that can
be changed and those that cannot be changed and about timetables
and difficulties.
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