Examination of Witnesses (Questions 20-39)
PROFESSOR CELIA
DAVIES, DR
ED MAYO
AND DR
JONATHAN TRITTER
1 FEBRUARY 2007
Q20 Mr Campbell: Are there any examples?
Professor Davies: One of the most
fascinating things to happen is that the public can come and help
the burdened manager who says, "I do not have any room for
manoeuvre here." Sometimes people suggest that perhaps there
is room because they will provide support in fighting a particular
target. In that event it is a win-win all round. But the crucial
factor is brutal honesty as to what it is about, why it is being
done and what the outcomes can be and, at the end, to show people
that it has or has not had an impact. Either way they would be
happy. They would have been heard and respected; they would have
had their two penneth.
Q21 Dr Taylor: A lot of witnesses
have expressed the concern you have expressed that the NHS collects
views but is not very good at changing its mind or acting on them.
You have also said very clearly that the NHS pays lip service
to patient and public involvement but behind the scenes people
are threatened. How can one ever alter that threat under the surface
so that people on PCTs and trusts are no longer frightened about
involving the public?
Dr Tritter: I think the threat
is reduced partly through the procedures that Professor Davies
has already outlined: one must be very clear and transparent about
the purposes of the engagement, the scope for making a change,
the feedback mechanisms that allows one to inform all of the stakeholders
involved, not just members of the public or patients, and the
provision of space in which everyone can share their perspective.
One then creates an arena in which one can have a decision that
is relatively acceptable to all and takes it out of an arena where
these matters are seen as threatening.
Q22 Dr Taylor: Is it fair that it
has been easier for the NICE Citizens Council because it has a
limited range of questions to consider?
Professor Davies: I would not
say that. There was enormous commitment within the organisation
to make the NICE Citizens Council work. In some ways it did not
work that well, but it supported and respected the members of
the council all the way through and put quite a lot of resource
into it. To return to what you said at the beginning of your question
about how to avoid threat, if we think about the medical profession
there is some training to do; there is a change in identity. It
seems to me that the modern notion of what it is to be a professional
is that it is someone who does not necessarily have all the answers
and expertise but who is prepared to work with patients. It is
a shift. There are very different people in the medical world
at the moment. There is another generation coming through which
I believe can work well here. I hope that in terms of the education
of all the professions, which are now bringing in lay people as
part of the curriculum in the medical schools and nursing courses
and across all the allied health professions—this ensures
that the patient's voice is introduced early on in the training
of health professionals. They see that they will not have all
the answers; they need to consult, and the public come back to
talk about communication as the most important thing.
Q23 Dr Taylor: Therefore, it was
the resources and support from NICE itself that made it work?
Professor Davies: I believe it
is absolutely crucial that a lot of resources are put into it.
When the outcomes came through there was still a lot of scepticism
about whether or not it was worth spending all that money. One
has to take a pretty hard line and keep going to make some of
these things work.
Q24 Dr Taylor: You made a very interesting
point. You said that although the council had come up with pretty
clear views it agreed that they should not be binding and did
not want to make the final decision. How did that come about?
Professor Davies: I give you a
brief example. The debate was about what is called the Fair Innings
argument; in a sense, whether one should ration resource, for
example and not give resources for older people who had had long
lives. The Citizens Council had a debate about that with the proponents
on both sides. One councillor commented, "If the council
made a decision of this sort I really would not like to face my
father." I believe there was a general feeling that it was
somebody else who made the hard decision. They wanted their say
but did not want to be the final arbiters of what should happen,
and I believe that was absolutely right. It was a forum that explored
the issues. It was not necessarily representative of anybody.
The way that all the arguments came out was dependent on how good
the process was. That means that the outcome, rationale and argument
needs to be fed back into a bigger political process and be part
of the decision-making, not the decision itself.
Q25 Dr Naysmith: Is there not a rather
more cynical interpretation that one makes the easy decisions
but leaves the difficult decisions to someone else?
Professor Davies: I think that
the difficult decisions in the end are those made by elected representatives
and they are accountable through the normal electoral process.
We are now at the point of broadening the inputs to that process
and making sure that different kinds of debate take place, not
just going out to poll people—who may never have thought
of the issue—but doing other things like creating an informed
debate and taking account of that. That is why I believe politics
and the democratic process are changing and we need a whole array
of different inputs which finally come to a debate in the House.
Q26 Dr Taylor: You say that there
are some very important lessons to be learned from the Citizens
Council for LINks or whatever take over in the end?
Professor Davies: Where organisations
want a real dialogue with members of the public there are certainly
some lessons about how one does it: how difficult it is, how long
it takes and how one frames the questions so people can answer
them.
Q27 Sandra Gidley: I am beginning
to wonder what the point of it is. Although that sounds very cynical,
if people duck out of making decisions how has all that talking
changed anything or improved the process in the end? One assumes
that once it reaches a political level one goes right back to
that point and has the time to find out what the council said
which does not make decisions. Let us be realistic about it. A
lot of money is spent on talking. I should like to know how that
improves any single decision that is made anywhere.
Professor Davies: One can do different
kinds of things. One can ask what percentage of people think x
and do a survey. The sort of thing that the council was doing
was to look at it in a different way. Where it is a complex and
difficult issue let us take a group of 30 people, inform them
about all sides of the argument and see where they end up in their
debate. What one gets out of that is a position that somebody
can take forward. People may start with a certain view but, having
heard all of that, quite a few members change their minds and
understand that the balancing act is a political decision and
they come to a particular view.
Q28 Sandra Gidley: But there is no
decision and it has not changed anything. You just have 30 people
who are better informed. I am a great believer in people being
better informed, but we are spending public money on this.
Dr Mayo: To give a practical example,
at a more local level Breakthrough Breast Cancer had been carrying
through a "service pledge" exercise to engage people
who had used services related to breast cancer with service professionals.
It was found in one area that the service was very good but people
had a nightmare time for the very simple reason that when they
reached the car park in the hospital they found that the machine
would take only £2 coins. I do not know how many Members
of the Committee have £2 coins on them, but a lot of people
do not and will not have them. It becomes frenetic. You have a
time slot for your appointment and you have to find change in
a cafe, for example. It is one of those silly, stupid things.
To mention in the appointment letter that if the patient is to
come by car a £2 coin is needed for the car park makes a
big difference to the way people experience the service. At local
level patients are the world's greatest experts on the experience
of a service. Therefore, they have knowledge and expertise. Part
of involvement at a local level, which is different from national
level, is to harness that because all kinds of cultural norms
lead to professional judgments that miss out the soft side of
what it is like to experience a service. It is the human touch
in NHS services where involvement can be most effective and practical.
Q29 Sandra Gidley: I can see the
point of that because there is an outcome which benefits the patient.
I received a different message previously. Referring to the local
level, I want to return to the public and patient information
forums. You said that they were poor value for money. Does that
mean there is a problem about the general quality of work in those
forums?
Dr Mayo: We have had a very good
set of inputs from the Commission for Patient and Public Involvement
in Health. It has been quite honest about some of the variabilities
and problems that PPI forums have faced. One must pay tribute
to the people who are members of the forums and have contributed
in a period of considerable instability and uncertainty. Those
that have succeeded and made their way through deserve huge tributes
and plaudits, but it has been variable and things have got in
their way in performing their job. They ended up being quite bureaucratic
processes; they were creatures of statute. I believe that their
functions and operations were overly-prescriptive at national
level and did not really allow for the kind of flexibility to
use resources in creative ways to engage wider groups of people
and hard-to-reach categories in a more effective way. It ended
up being too centrally prescribed. But there is now probably a
consensus. I do not believe there needs to be a controversial
criticism of PPI forums, or vice versa, because those involved
in them are the most articulate and reasoned people in terms of
the balance of pros and cons experienced over the past four or
five years.
Dr Tritter: We are not sure of
this because there has been no formal evaluation of PPI forums.
I think that LINks offer a huge opportunity to build in evaluation
from the beginning of the process so we are clear what they are
doing and evaluating how they proceed and the processes they use.
I believe that that is a huge opportunity.
Q30 Sandra Gidley: Was one of the
problems with the forums the fact that very often the work of
the secretariat had to be put out to tender and some of the providers
of those services were questionable? You are nodding.
Dr Mayo: I am nodding. That is
a dangerous thing to do.
Q31 Sandra Gidley: It is difficult
to put it on the record.
Dr Mayo: As far as concerns, from
hearsay, I have certainly heard examples of that, and I am sure
Members of the Committee have their own experience. In terms of
what works, however, if one looks at the social care field the
involvement of people with disabilities in the design and running
of their own services is taken for granted. One has a whole range
across the voluntary sector with the emergence of social enterprises
of energetic, living forums of participation that are incredibly
creative and make an input in their own fields. One compares that
with the creatures that PPI forums were prescribed to be. One
is a living entity; the other finds it very hard to operate and
it is difficult for people to take ownership of it. I believe
that they were swimming against the tide on some of those issues
such as the support you mentioned.
Q32 Sandra Gidley: Unfortunately,
my local experience is not entirely positive. You have paid tribute
to the people involved and I believe that they are dedicated and
are the most articulate and reasoned, but they do not appear to
be reaching out to the wider community. Do they represent the
public at all in those circumstances?
Dr Mayo: The National Consumer
Council represents the interests of consumers at national level.
We do not represent consumers in some parliamentary or democratic
way. I think there is a sense that these are representative patients
rather than patient representatives. In order to do that they
would need a good deal more diversity, and part of the opportunity
presented by the change is to find ways to do what the public
said it wanted in terms of not seeing the same old faces.
Professor Davies: Once somebody
asks whether it is representative the whole argument collapses,
because it never quite is. What one must do is ask whether the
organisation will find ways to get to hard-to-reach groups and
learn how to do that. Will it run events that bring together people
from hard-to-reach groups in ways they find amenable? They will
not simply come and sit on a committee. One has to do different
things to involve people.
Q33 Chairman: Dr Tritter, you said
you were not sure about the quality of PPIs at the moment and
you thought that LINks would be better. Have you attempted to
find any evidence about the former and latter? Will any of the
decision-making that is to take place in the next few months be
based on any evidence you have seen?
Dr Tritter: I think that LINks
are set up with a different aim in mind. Their aim is to capture
broad-based community engagement and involvement, which is very
different from a small number of chosen, selected and appointed
individuals in relation to a trust. Their structural organisation
gives them a different kind of remit and skill to act.
Q34 Chairman: It was said earlier
that not many studies on PPI had been conducted. Is that any more
than a hunch?
Dr Tritter: Most of the published
evidence on involvement relates to one-off ad hoc involvement
activities and the experiences of being part of those activities
and outputs, particularly in relation to information provision,
that is, the wording of leaflets and those kinds of things. There
are no studies of which I am aware that follow up longer term
and look at the impact in terms of the change to which involvement
leads. It seems to me that the most important aspect on which
LINks can assist is to move beyond asking NHS organisations whether
they involve patients and the public to asking them what they
have done on the basis of the involvement. I think that LINks
has an opportunity to do that in a better way.
Q35 Dr Naysmith: I was quite struck
by Dr Mayo's little vignette of the £2 coin and the need
to make it simpler for patients to turn up at the hospital and
park. As someone who was a member of two community health councils
before I came here and knows a little about PPIs and the way they
operate in the Bristol area, that is just the sort of thing that
is so valuable to patients and consumers of the services. Sometimes
it may be a bit more clinical when it is to do with ward arrangements
and that kind of thing. It seems to me that in essence that is
really valuable. You get feedback on something that you can change.
This morning Dr Tritter has been arguing that the new role for
LINks is to oversee commissioning decisions and get involved in
them. The suggestion is that that we need to move a way a little
from the sort of thing Dr Mayo described. Is that the right thing
for LINks to be doing? Should it be doing that? If so, will it
leave behind the other role which would seem to be a great mistake?
Dr Tritter: I do not think I suggested
that it was moving away from that role. I suggested that in the
draft legislation there was a particular role for LINks in relation
to commissioning. That is different from what we have seen in
practice with PPI forums and is potentially advantageous. I believe
that in a sense there is an excellent role for LINks in providing
an account of what information has been given to providers about
the experience of care from that organisation. Such an account
can be compared with submissions given to the Healthcare Commission
about what the provider organisation said it did in relation to
involvement. That provides a comparison of different accounts
which I think would be hugely beneficial.
Q36 Dr Naysmith: Volunteers like
to see some results from their commitment in turning up at meetings
and so on. It will be much more difficult for them to see results
from overseeing commissioning than the kinds of things that we
talked about earlier. Is that likely to put off volunteers, or
is it something which will encourage people to volunteer?
Dr Tritter: As yet we are not
clear exactly how such processes may occur. There is certainly
some recent evidence from southern Sweden that looks at ways in
which local people can be involved in setting local health priorities
by way of sitting around the table with commissioners, managers
and clinicians to talk about the different kinds of priorities.
On the whole, there is likely to be significant agreement. Where
there is disagreement one of the matters such discussions may
reveal is where the source of that disagreement may lie. Does
it lie in different values and priorities that different sections
of the community may identify? That may move us to a recognition
of sensitivity to diversity and away from conflicts over different
views of what should and should not be commissioned. I believe
that that holds huge potential.
Q37 Dr Naysmith: Do you think that
the opportunity to become involved in that will be attractive
to people?
Dr Tritter: If people felt that
their views would make a difference to how commissioning decisions
were made and their participation would lead to greater transparency
in those processes they would want to be involved.
Dr Mayo: It is absolutely right
that people go into this looking for practical issues and practical
results. Will it make a difference? We have seen examples in the
field of cancer, for example, of involvement networks emerging.
They start off with the absolutely critical issue of the humanity
of care and how people are treated. I talked earlier about wigs
for patients undergoing chemotherapy, for example. That is something
that you can get either right or wrong. It may start with a personal
reason. People may have had personal experience and want to put
back something, or may be angry about it and put it right, but
over time they may be more interested in some of the system issues.
I agree that the issue of commissioning is more obscure to ordinary
people and patients and yet it is key to whether services are
delivered in responsive ways. One needs to build up the involvement
so that one can take people voluntarily into that, but, as with
the public at large, when dealing with volunteers one always needs
to start from where people are.
Professor Davies: I would be very
unhappy if the Committee began to think it was either or; that
is, either someone would be involved as a specific service user
or would be involved in commissioning. At all levels it is possible
to become involved if people are clearly briefed about the scope
for decision-making. At these other levels one is acting as a
citizen, not as a service user. In the work that we have done
we have certainly detected an appetite for this.
Q38 Mr Campbell: Where PPIs are working
badly or not at all would LINks do better?
Dr Tritter: In my view, yes. To
create opportunities for people to be involved and to have an
influence over the commissioning of services and an input into
local organisations about what services have been provided and
how is better than not having it.
Dr Mayo: The honest answer is
that part of the idea of LINks is that it is really a permission
slip to open up ways to involve people. Responsibility must be
on the providers to open the door. If the door is shut it is very
hard for people to be heard at all. The duty must be there and
there must be an inspection of the extent to which they are involving
people and that involvement makes a difference. But if one opens
up to different ways of doing it one will see a variety in the
effectiveness, performance and engagement. That means we need
to learn from them what works. But the moment we apply prescriptive
standards or take an overly-centralised approach in terms of exactly
how they should work and what should come out of them we lose
the baby with the bathwater. A uniform approach will not really
deliver the wider engagement that has been required. I hope that
LINks are an improvement on some of the things we have seen with
PPI forums. Will there be variability? There will be variability
and we need to embrace some of that.
Q39 Stewart Jackson: As you may know,
there has been some concern with respect to the Bill's lack of
clarity about the structure of LINks. The Committee has received
some robust evidence from some people. Healthcare providers in
Bristol have said that the thinking on LINks has been driven by
conceptual ideals with insufficient attention to the practicalities
of how they will work; and respondents in Yorkshire have said
that they are designed to allow the centre to abdicate responsibility
for outcomes. The department has made it very clear that it does
not want a centrally imposed structure for PPI but it will supply
guidance developed from the experiences of what it calls "early
adaptor sites". Is the department right to take that stance?
What do you think should be included in that guidance?
Dr Mayo: As you probably detected
from the tone of my earlier comments, I agree that flexibility
is needed to use them or get much more money out at local level
for involvement exercises and find ways to do it in different
ways. In some ways I challenge the submission. It sounds like
people asking for a tick-box and something that they know exactly
how to do, whereas the challenge is to say that they should take
ownership of it. There are different ways of doing that, as we
know from this field of involvement. There is no one magic bullet.
If one is looking at involvement in education and a whole range
of public services there are different ways to do it, but the
responsibility must still be upon them to design their own process.
There are areas in which guidance would be helpful in terms of
suggesting some models that could be tried. I think that in the
field of governance it would be quite helpful for the department
to come up with a little more clarity on how this would work.
Professor Davies: I believe that
the key role of the department here is to facilitate and share
good practice, not to come up with more and more very broad top
down statements of what to do. Here I am cheered by the fact that
Dr Tritter's unit is a resource to share good practice. I agree
with him that there is not a robust research base, but there is
an awful lot of experience out there that can be brought together
and built upon. Therefore, I believe that the components to take
it forward are: facilitation from the department, an independent
and decent evaluation study that starts at the beginning, not
half-way through, and good practice.
Dr Tritter: The NHS Centre for
Involvement is overseeing the learning from experience in nine
pilot sites: two run by the Healthcare Commission and seven by
the Commission for Patient and Public Involvement. We expect to
learn significantly from those very diverse sites and will share
that experience on an ongoing basis as well as the tools and approaches
that we use to look at those areas.
| 
