Examination of Witnesses (Questions 20
WEDNESDAY 16 JANUARY 2002
20. I see from our briefing papers and the submissions
that we have that the CA has come up with four recommendations
concerning NICE where they see improvements, one of which struck
me as eminently sensible and that was the one about resources
being made available to patient organisations to enable them to
have more of an opportunity to make a contribution. The thing
that worries me is that the recommendation then goes on to say
that the financing for this should come either from NICE or the
government. Do you not fear that if the funding were to come from
that the independence of those patient organisations or their
effectiveness might be compromised or, even if they were not compromised,
if they came up with views or opinions that others did not agree
with, they would be accused of selling out to NICE or the government
because they were reliant for some or all of their funding from
those organisations? I am not sure how you get round that problem
but do you think that recommendation is effective?
(Clara MacKay) Yes. I quite take your point. When
we were thinking about this recommendation, we very much had that
same discussion. Any voluntary organisation or patient organisation
that takes grants from the government or from other agencies certainly
goes through this dilemma. There are two parts to that. One is
where patient organisations have in some cases very effectively
identified for NICE areas that require further research. One of
the things that came through very strongly in our inquiry was
instances where what was important to a patient in terms of effectiveness
of the treatment was not something that may have been covered
in clinical trials that were being looked at by NICE. It seems
to me that that would warrant recognition of the need to have
NICE, for example, commission research to further investigate
that. That could be research money or research commissioned from
that patient organisation if it has the expertise and capacity
to manage that or perhaps some research by another organisation.
That is one part which is not just relying on patient organisations
to provide information that they are not going to take further
and do some proper research around when that clearly is needed.
The other part of it is that these patient organisations, regardless
of whether or not they are providing clinical information, have
a really important role to play in the NICE process, flagging
up what needs to be looked at as part of the accountability process.
I think NICE, when they give evidence, will say that they appreciate
and rely on that very heavily. What came through so clearly at
our inquiry is that some organisations are dedicating a whole
individual for three months to trying to influence the NICE process.
These can be quite small organisations. Stepping back, this is
part of a bigger public accountability process and that does need
to be recognised. Funding does need to be made available to patient
organisations to enable them to do that. The dilemma about is
the money ring fenced within NICE to ensure that patient organisations
are supported in their work in contributing or is there another
funding poolfor example, there are section 64 grants that
the Department of Health manages. Should it come from there? I
suppose that could be subject to some debate but the principle
and the point is that public funding should be recognised as part
of the process and public funding should be made available to
21. I wonder if Ms MacKay thought, when NICE
was set up, that there would be such an emphasis on lobbying,
both from patients' groups and from drug companies? What she has
just said suggests that she wants more funds, so I suspect, the
patients' side can do a bit more lobbying. Did you have the kind
of naive idea I had, as a strong supporter of NICE that there
would be scientific and medical evidence and that judgments would
be made on whether treatments, including drugs, were effective
or not? From what she has just said, it strikes me that we are
going in the wrong direction on accountability and there are other
ways of achieving that, but do we want to spend vast sums of money
enabling people to make the same point over and over again?
(Clara MacKay) I would not call it lobbying.
22. It looks like lobbying.
(Clara MacKay) I recognise that in some instances.
What we saw at our inquiry is that patient organisations quite
readily acknowledge that they take different approaches to NICE
and stake out their stall in different ways. Some work completely
focused on trying to identify issues that are important to their
patient constituency and trying to get NICE to look at those.
Others see their role more as lobbying for patient/public access
to treatments that are on the market.
23. Is this a good thing?
(Clara MacKay) I think it is a natural thing and something,
you are quite right, it is probably naive to assume does not happen.
What we are talking about in our recommendations is not to support
organisations to undertake political lobbying but to contribute
in a way that is effective and appropriate. It is not about saying
that we are going to launch a big media campaign.
24. That is what would happen if you got more
funds channelled into organisations.
(Clara MacKay) I do not think it would because with
any funding, for example, if you were looking at a drug for diabetes
or Alzheimer's and you wanted to do some work with the patient
constituency that might use that drug to find out what are the
elements of that treatment that are most important to the patients,
I do not think it is fair to expect those organisations to invest
25. I am not saying you should stop patient
organisations but if you could stop some other people doing it
then maybe patient organisations would stop doing it and we would
get a much more rational, sensible answer.
(Clara MacKay) I am not sure I understand that point
but what we are talking about in terms of support and funding
is for contributions that we feel are expected and needed as part
of the process; yet which patient organisations often struggle
to provide and indeed a general concern within the patient group
community that, where there are not patient organisations to support
that process, there are constituencies of patients that have no
representation in the process. That is another concern.
26. Has the number of complaints to the Consumers'
Association gone up since the advent of NICE in terms of people
writing or telephoning, saying, "Look, we cannot get this
particular product" and do you think NICE is a form of rationing?
(Clara MacKay) I cannot say officially or formally
whether formal complaints from our members, for example, have
gone up since NICE has been established. We know from some research
that we have done on looking at direct consumer advertising and
doing qualitative research, interviewing patients and patient
organisations that there is increasing public anxiety about access
to treatments. NICE often provides the focus for that anxiety.
It is probably a safe bet that the concern about NICE has increased
and public concern about access generally has increased. If NICE
is working effectively, then no, it is not rationing because it
is providing guidance for the proper use of clinically effective
drugs and it is a general policy stand that the CA very much supported
when the Institute was set up.
(Dr Iheanacho) Rationing is a loaded and difficult
word for some people. But take the situation where one of the
things NICE is charged to do is to provide advice on effective
treatments for patients to help reduce ultimately things like
postcode prescribing, and moves are afoot to ensure that health
authorities implement NICE guidance: if that guidance is secure,
reliable and credible, what it should mean is that patients uniformly
across the country get access to good, effective treatment. Health
authorities no doubt will have to cut their cloth to fit if, for
instance, the cost of implementing a whole batch of NICE guidance
means that they cannot afford something else. That is a bridge
that will have to be crossed. The difficulty comes when there
is serious concern about the quality of the guidance because if
the guidance is not secure what you end up with is advice to be
applied nationally that says people should have access to this,
this and this; and then you have health authorities potentially
up and down the country who say, "Okay, we have got to do
this. What can we cut?" If they all end up cutting different
things, it is hard to see that that in itself is a way of stopping
postcode prescribing, because it may well be that things that
end up being cut are things which NICE have not looked at but
that are effective treatments. For me, it all goes back to the
quality of the guidance. If the guidance is of high quality, reliable,
credible and usable, people are in a position to say that whatever
the pain of implementing it, it is worth doing. If it does not
fulfil those criteria, we could end up with a worst case scenario
where everybody has access to things which are not particularly
good and then people start losing access to things that work perfectly
well, in ways that differ across the country.
27. Could we have a copy of the paper you sent
to NICE about the influenza drugs?
(Dr Iheanacho) Of course.
Chairman: If there are no further questions,
can I thank you both very much for your very helpful evidence.