Examination of Witnesses (Questions 140-156)|
WEDNESDAY 16 JANUARY 2002
140. The Government's response to our Cancer
Research report gave a commitment to "secure the future of
cancer registration". Clearly you do not think much progress
has been made?
(Professor Sir Paul Nurse) No.
(Professor McVie) We have not seen any. You are advised
by an expert greater than the sums of the brains round this end
of the table over there. I have no doubt you have heard a blow
by blow account. It just is a major issue and could be devastating
for cancer research.
141. Just to finalise the issue then. The Patient
Information Advisory Group was set up in May 2001 and it met for
the first time only last month.
(Professor Sir Paul Nurse) Yes.
142. Regulation to protect cancer registration
and cancer research has still not been made. From what you say
you obviously believe this delay is adversely affecting your job?
(Professor McVie) I do not think there is any doubt
Bob Spink: No doubt we will all be looking at
that and trying to address it in the future.
143. This is a question for both Gordon and
Paul. One of the strongest criticisms in our report was the fact
that the Government only appeared to be putting in half the amount
of funding into cancer research that your two bodies were doing
between them. This elicited from the Government a promise, an
undertaking, to match your contributions by the year 2003. When
we questioned a previous witness, Sir John Pattison, about progress
towards this commitment he told us that, in fact, Government was
already matching on a one to one basis which I have to say we
found a little surprising and we wondered about the accounting.
We would like to know your response to that.
(Professor Sir Paul Nurse) I think you should wonder
about the accounting. What they have done is had a look at some
of the other research activities, for example in the BBSRC, they
have badged what could be said to be generic research into biology
and biomedical work and re-badged that as cancer. Now, I know
some case can be made for it but let us just get this on the table.
In, for example, the basic research institutes of Cancer Research
UK there is quite a lot of basic research which you could imagine
going on in other institutes but it is going on with a clear objective
of understanding cancer and it is not simply basic research, it
is basic research which is always in the back of the mind which
should connect with that general objective. It really is not the
same thing as having a research project or programme funded in
a university in an isolated place which might have in some other
universe and some other time some sort of relevance. It is not
the same thing. I think it has been massaged and if I were you
I would look carefully at the accounting.
(Professor McVie) It is the most creative accounting
that I have come across for a very long time. We have even got
the HEFCE money that was dissected to work out how many
144. It occurred to me that some of this money
might be made up by notional costs involving clinical trials which
represents money which should be being spent on patient care anyway
irrespective of whether they were in a trial or not. Do you think
that comes into the equation?
(Professor McVie) You are absolutely right. The notion
that the clinical trial is incongruent with clinical care is absurd,
it is unethical. In many, many cases the best clinical practice
is to put the patient on a clinical trial.
145. Where the Government has allocated funding,
state funding, for basic or clinical work, hypothecated funds,
has it actually materialised?
(Professor Sir Paul Nurse) We have had some. For example,
the National Cancer Research Network, that is new money. The figures
are not in front of me but I think it is probably over 20 million
or around 20 million, so this is significant. We have to give
them credit for that. There is some new money in the system but
I just wish they had not gone through this exercise because we
could have congratulated them more enthusiastically on what has
been done, because it is good, if it was not submerged in this
smokescreen. I think you should really push at this. They have
not achieved the objectives you set them, which was to get them
to match our expenditure, they simply have not done that.
146. Do you have any specific suggestions as
to what the Government should be doing?
(Professor Sir Paul Nurse) I think they could look
at even closer interactions with Cancer Research UK. As I said,
we know the business, we are the experts, I think they could look
at putting some extra money into us actually.
(Professor McVie) Chairman, the obvious way to identify
this money would be to have it passed through in a National Cancer
Act directly to the National Cancer Research Institute and then
spent by that conglomerate and then there would be no argument,
that would be cancer research labelled money, end of story.
147. Professor Miller, do you want to add anything?
(Professor Miller) I totally agree because I do know
a bit about the money that goes into universities. The Government
puts money into cancer research but we are talking about the amount
and not whether it does it or not.
Chairman: This Committee will be reporting and
I am quite sure that we have the message and you have our sympathies
and our understanding of what you are saying here today, guarded
as it might be. We feel much the same. It is not just in this
area that we are bamboozled, it is in many other areas as well.
No doubt Members of the Committee will pick that up when the report
comes out. Thank you for saying bluntly what you have said.
148. We touched earlier on translational research
networks. Could you say where do you think the UK's attitudes
towards translational research has improved since the Cancer Plan
was published last year?
(Professor McVie) Since the Cancer Plan was published?
(Professor McVie) There is not a shred of evidence
that it has.
(Professor Sir Paul Nurse) Not due to the Cancer Plan,
if that was the implication. Translational research is at the
centre of what we do and what we intend to do, but that has not
been influenced in any way by the Plan. We are driving through
what the right strategy is for Cancer Research UK. I do not think
it is influenced directly, but that may not be quite what you
150. What do you think should be done to change
that approach? It sounds very much as if you are driving this
process and nobody else has been terribly supportive of it. What
do you think should happen to change that approach?
(Professor Sir Paul Nurse) We need to explore this
more fully in our strategy and so on, but my own personal view
of this is that one of the greater weaknesses is the appropriate
trained personnel to work at this interface because it is a difficult
interface, it is very difficult research, but scientists who are
trained to do that do not always fully appreciate the clinical
drive and the difficulties there and clinicians often do not have
the experience or the background to be able to easily take that
on. This is why we are focusing so much on training, because we
need to fill that hole. I think there is a funding issue but what
we are looking at is a personnel issue here. We may need to recruit
from overseas some senior positions here to help us drive this.
We have, of course, some excellent translational scientists in
the country and we are involving them directly in trying to develop
these programmes. I would identify personnel as a major issue.
151. Who do you see filling that gap in personnel?
Is the training issue something that you would have ownership
of or do you think it is something the Government should have
(Professor Sir Paul Nurse) We will do it. I suspect
our commitment will be greater because we have seen it, we are
focused, we know what the issues are, we are out there with the
community and we will probably do it better. We will work, I am
sure, in part through the National Cancer Research Institute,
they will be aware of everything we are doing, and it may well
be that we can look for some joint initiatives but, frankly, this
is going to be a core issue for us in the new organisation.
(Professor McVie) There can be no dispute about who
funds the most cancer scientists in this country, it is Cancer
Research UK by a long, long way. You can find these people and
you can see who pays their salaries. Similarly in clinical training,
in cancer medicine and in radiation medicine and so on, the main
trainers are us. If you look at who are sitting in the Chairs
of Oncology throughout the country and several places in Europe
they would have been trained within one of our centres.
152. It just occurs to me that perhaps I should
have mentioned earlier, I do not know if it is relevant, my son
is a neurosurgeon often dealing with brain tumours. Perhaps I
should have registered that as an interest. Looking at access
for cancer patients to new anti-cancer drugs, this Committee has
previously criticised NICE for not approving new cancer drugs
early enough for use in the NHS and has also mentioned the difficulties
faced in entering themselves for clinical trials. Has the situation
with NICE improved at all? Are you concerned about the access
of UK patients to new medicines that are developed here, sometimes
with your funding by the way?
(Professor McVie) We are not happy yet. NICE has got
through some of the backlog but they are still not performing
to our expectations or standards. There is a formal review of
NICE going on, in fact there may be more than one review at the
present. My office has certainly just submitted evidence from
Campaign-funded oncologists to a review of NICE and from that
review there were a couple of elements which were sticking out.
One was they (NICE) are still taking a phenomenal time to do a
review of a new drug and they are still not starting the review
until some months, and sometimes years, after a drug has been
passed by the regulatory authorities as safe, so there is a doubly-whammy
here. That is causing real, serious frustration, particularly
amongst informed cancer patients who can get the information about
what is available for their kind of cancer. There is also a serious
question of the competence of the so-called experts on NICE committees.
There is not a known oncologist or anybody who is known to have
been vaguely trained or familiar with the problems of oncology
or cancer drugs or cancer techniques on the committees. Bringing
in a couple of experts from time to time to give you a wee helping
hand is not the kind of peer review process that we would find
robust enough. I do not yet believe we are up there. The feeling
out there amongst the people we canvassed for our review submission
was very much that there was a cynicism and that NICE is still
being used as a rationing tool by Government.
Bob Spink: Certainly people with MS feel that
is the case. The Government are now making moves on that one.
153. Can I just intervene on that point. On
the drug Temodal, whose development I have watched very closely
because I used to be involved in imidazole research and I have
followed Malcolm Stevens' history with interest, where have we
got to with that drug because it has been around an awful long
(Professor McVie) It has taken several years to go
through the system, you are quite right, which is particularly
anachronistic because this was UK invented, Cancer Research Campaign's,
Malcolm Stevens' drug. The number of trials which NICE agreed
to look at was severely rationed. They decided to discard a lot
of the evidence whereas they accepted like evidence in other drugs.
For some studies they accept abstracts, in others they want to
take randomised papers. I think the present state of affairs is
that Temodal is acceptable for prescription to patients with relapsed
brain tumours after the failure of radiation and another kind
of chemotherapy. Now Cancer Research UK is actually running a
trial on earlier stage brain tumours, which is the obvious place
to test this new drug, and we are looking, also, at supporting
studies using Temodal with radiation because, like the drugs we
were mentioning, there is quite a possibility of radio-sensitisation.
Meantime, you really have to be down to your last four or five
weeks of life to qualify for Temodal and of course that cuts the
cost, in fact the cost becomes irrelevant.
154. Are the particular national guidelines
for specific cancers updated often enough and are they flexible
enough to be really effective?
(Professor McVie) Guidelines are a fine thing but,
as you are hinting I think, they need to be updated, they need
to be critically assessed from time to time. There seem to be
as many guidelines as there are regional health authorities. There
are Scottish ones, there are Welsh ones, there are Irish ones.
I think that national guidelines are important but they do have
a tendency to describe the minimum care for a person with a particular
kind of cancer and not the optimal care given access to all the
resources. I think if we were allowed to write them from our perspective
then we would be saying that Temodal might be made available for
patients with brain cancer earlier. I think there is a real concern
there. In some parts of the country not even the minimum guidelines
are being followed, and that is part of the explanation of the
point that Andrew Miller made earlier, that we are still not up
alongside Holland, France, Italy in the outcomes for common cancers.
Some of the simple things are still not getting done properly.
155. So room for improvement there as well.
Do you think that patient access to clinical trials has improved
over the last two years and has there been any significant progress
made towards developing a database of trials for patients' use
as we have previously recommended?
(Professor Sir Paul Nurse) I will deal with the former
one because the answer is no, but the NCRN should improve that.
(Professor McVie) No in England.
(Professor Sir Paul Nurse) No in England, which is
the major in numbers. The NCRN should lead, as I mentioned earlier,
to a doubling in the coming five years, that is the objective.
The second question I do not have a view on.
(Professor McVie) The second question was?
156. The second question was progress made towards
developing a database of trials for patients?
(Professor McVie) There are a couple of databases.
Our website now has a database of 130 clinical trials available.
You can get at that from next month through Cancer Research UK's
website or Cancer Help, which is the property of the new charity.
We have also got notes for patients, we have got help lines, we
have got the information that is available in two languages, American
and English, and we have been doing comparative studies among
cancer patients to see which they prefer. That has been a terrifically
welcome innovation. It is not totally comprehensive but the bulk
of the blue chip trials in the UK, including pharmaceutical company
trials which have been independently monitored, are now up on
Bob Spink: While I have got the floor, in thanking
our witnesses for what they have said tonight could I say that
I have enjoyed it very much and learned an awful lot from their
evidence. I think you were particularly generous to say that we,
this Committee, or the previous Committee anyway, had put cancer
research on the map, and I thank you for that comment. That is
Chairman: I was going to say when I look back
three years ago at where we were and look at the progress we have
made and the questions that have been generated here today because
of the discussions that you played a prominent part in, I feel
very proud that the Committee was able to push it forward along
with you. As you have pointed out, there is still a long way to
go and I can assure you that this Committee will not let it go
until we get all those things that we put in our original plan.
Working with you has been a real big feature of this Committee
over the last few years and is a good example of how Select Committees
can move things forward as long as we get people who are enthusiastic,
keen, knowledgeable and are prepared to engage in the political
process. I know that you have met in other places with some of
us in meetings and it is going to go on and on until we get the
whole process of cancer treatment, care, research, to the world
class that we know we can take it to right across the board. Thank
you very, very much for taking the time to come. We wish you well
and we will see you again. Thank you very much and well done with