Exmination of Witnesses (Questions 180-193)|
MP, DR RUSSELL
WEDNESDAY 6 FEBRUARY 2002
180. On the National Cancer Research Networks,
their object is to integrate research in cancer care, but why
then did you not introduce a research element into the existing
service networks rather than create an entirely new one? Would
it not have been cheaper, quicker, more effective and also as
someone whose local cancer network is Mount Vernon, we would have
(Yvette Cooper) Certainly the approach is to have
every cancer network across the country become a research network.
Some of those are moving faster than others and I do not know
whether Russell or Mike want to talk more about the progress of
(Professor Richards) I think we provided you with
an update last time. It may have changed again but I think we
told you that, of the 34 networks, nine had gone in the first
wave last April; a further nine in October and I think a further
13 are at the preparatory stage, so we are very near to involving
all the networks in some way or another. You talk about them being
separate: they are not really. They are built on exactly the same
networks. It is the co-ordinating process that is centralised
with a group based in Leeds led by Professor Peter Selby co-ordinating
the work of the National Cancer Research Networks and also making
sure that we link in with the National Cancer Research Institute
in terms of the clinical studies groups. There is a clinical studies
group related to breast cancer; another to kidney cancer, for
example, and they are the people who propose the research that
will be done through the National Cancer Research Networks. So
it is an organisational process but it maps on to the service
181. I am encouraged by that answer; thank you.
Can I ask you a couple of other questions as well? I would like
you to tell us what the increase in the number of cancer patients
enrolled in clinical trials has been since the National Cancer
Research Networks began? I believe there has been an increase
but I would like to know the data. Secondly, could you tell us
more about the distribution of the £20 million per annum?
Is that pro rata for the networks? Are you going to give more
for the fledgling networks or less?
(Yvette Cooper) Yes, and that will be staged money.
Once the networks are all fully in place it will be an additional
£20 million but it is building up to that over time, so we
will provide you with as much information as we can.
(Professor Richards) We will not at this stage be
able to give you the information you are asking for about the
increase in recruitment into clinical trials but later this year
we will. I do not think our first estimates on that are due through
till the summer at the earliest.
Mr McWalter: We are very patienton that
matter at least.
182. We were told there is funding for a maximum
of ten translational research centres, of which eight have already
been announced. Will there be any further centres considered,
or is this it?
(Dr Hamilton) The funding that was set aside allowed
up to a maximum of ten centres. Eight have been announced so far,
and I think we mentioned which ones they were to you last time
we saw you. There are a further two networks that will go through
to the stage of getting full NTRAC network accreditation conditional
on and working successfully with the centre to bring a few of
the elements in their proposals into line with the rest of the
quality of the other networks. We have not publicly announced
which ones those are.
183. Also in January you announced £11
million for the National Translational Cancer Research Network.
Is this new money or a reannouncement of the £10 million
already promised to NTRAC? To add to that, NTRAC have told us
that each centre would receive a maximum of £200,000 a year,
which does not seem an awful lot to run a research centre of any
sort, particularly a translational research centre which one would
expect to be fairly expensive. How will that £11 million
be distributed over the eight centres, and over what sort of time?
(Dr Hamilton) The funding is for an average amount
per network centre. It is up to the co-ordinating centre to determine
the exact balance of funding for each of the centres based upon
their needs, strengths and how they fit within the strategic aims
of the overall NTRAC programme. The amount per centre is on average
£250,000 per year£200,000 of direct costs but
there were indirect costs of £50,000 a year as welland
that totals to £11 million over the five years.
184. So it is only roughly £2 million a
(Dr Hamilton) £2.5 million a year. In answer
to the second part of your question, I think Professor Richards
might have given you an answer to that last time. The funding
for the translational networks is the NHS contribution to translational
research. We already have a considerable amount of research investment
in translational research in this country from the cancer charities
and notably Cancer Research UK and from the Medical Research Council.
This money is intended to enhance that and to compliment it to
make sure that the NHS plays its true part in ensuring that the
developments in basic science can be translated from the bench
to the bedside.
185. Before we move on, how do the service networks
and the research networks link together? Is there a link between
them? What is the difference?
(Professor Richards) They are covering entirely the
same patches. The same hospitals are involved and, within each
network, on the service side we have a lead clinician, a lead
nurse, a lead manager and there is now a network board which is
usually chaired by somebody at chief executive level. Equally
for the NCRN aspect of the network there is a lead researcher
who organises the research, has been involved in developing the
proposals for that network, and clearly links through to Professor
Selby in Leeds on that aspect.
186. It is just interesting that, at the conference
we all spoke at yesterday, the afternoon session for one hour
was taken up with whether they should communicate with each other
by phone, letter, e-mail or however, so the communication between
them is essential, you would say?
(Professor Richards) Of course it is essential.
187. We will watch that space.
(Dr Hamilton) There was a meeting this morning of
all the NCRN network leads with Professor Selby and others from
the co-ordinating centre, and there is a meeting this afternoon
that I had to leave to come here between Professor Selby and the
co-ordinating centre and the Cancer Study Group chairmen that
Professor Richards was meeting before.
188. Severe difficulty, Minister, in gaining
ethical approval or obtaining data for cancer registration and
research has been created by the General Medical Council introducing
new guidance on patient confidentiality in November 2000. In fact,
Professor Gordon McVie told us, "I think we are verging on
chaos". How has this situation been allowed to develop and
progress as it has without your department dealing with it and
getting a grip on it? Also, we understand that draft regulations
have been promised for this month, I believe, February. Can you
reassure us that these regulations are coming and tell us something
about the consultation that took place with the PIAG?
(Yvette Cooper) Yes. As you know the reason that this
problem has grown was really to do with, I think, increasing awareness
about how issues around confidentiality and consent apply to the
NHS. As a result of the growing concern about this and the impact
that that would have for the cancer registries, powers were taken
in the Health and Social Care Act last year to try to ensure that
we could put cancer registries on a secure footing because, clearly,
the information that they gather is essential in terms of our
monitoring progress that we make on cancer but also having just
that database of information is very powerful too. So the power
was taken as part of that but we also set up statutory process
to have the Patient Information and Advisory Group to consult
on this as well because we did feel that it was important, if
we were going to say that there were some areas in the public
interest where this information could be gathered, there should
be some kind of check on this given the concerns that the public
rightly have with issues around consent and confidentiality. As
I understand it, the consultation has concluded on the draft regulations.
I do not know if we can add additional detail from the Patient
Advisory Group. Certainly we are keen to get these in place as
rapidly as possible. The GMC has taken quite a responsible approach
to the fact that these regulations are coming: that we have put
the statutory powers in place as part of the Health and Social
Care Act, and that it does take time to get this in place properly,
so they, in their interpretation of the way this should operate
in the meantime, have made clear that the cancer registries effectively
should continue their work because they are so important. I do
not know if we can add on the very latest of consultation and
the timing of regulations.
(Professor Richards) I think there is little more
to say than last time when Sir John Pattison went into this in
some detail about the membership and working of the Patient Information
Advisory Group, and we know that they strongly endorse the need
for cancer registration and I believe that those regulations will
be laid before Parliament within the timescale that we said before.
I would disagree with Lord McVie on the fact that matters are
in chaos; they are not. There is very understandable concern and
that is why we are putting matters right, but they are not in
189. We heard some fairly stringent criticism
from Professor McVie about NICE and its assessment of cancer drugs.
He referred to NICE taking too long to review the drugs, delaying
the start of the reviews and not having its own oncologist on
staff, and certainly I have heard from many other quarters reservations
about the resourcing of NICE in terms of expertise. I am ploughing
through a NICE review on something else at the moment which I
have to say raises some questions about this, so are you confident
of the capacity of NICE to do a proper job on some of these highly
technical, tricky assessments, and how do you respond to Professor
(Yvette Cooper) I think we should be clear about what
NICE has achieved and put this in context. We have never before
had an institute like this that was going to do proper, rigorous
assessments, taking evidence and looking in great detail at the
individual drugs and individual treatments. They have a huge programme
of work and I think the contribution they are making in terms
of setting those national standards, dealing with the problems
of post-code lottery and the fact that there have never been proper
national standards in many of these areas before is immense. I
think around 19,000 patients should now be getting drugs as a
result of the NICE decisions that have taken place so far which
I think is a huge achievement and worth putting in context. It
is certainly true that we have also been learning as NICE has
developed and as it has taken on additional work, and I think
we need to continue to do so to improve the way that things take
place, but part of the issue here is that we started off with
NICE having a huge backlog of drugs to deal with. So it was a
different situation when NICE first began its work, having to
deal with the backlog. Then we entered a new phase where we were
not dealing with the backlog simply but with new drugs as they
came on stream and, the backlog largely having been dealt with,
having to look forward as to how we deal with new drugs, and that
is a slightly different situation and requires a different approach
as well. We should not be critical of NICE because it had to get
through the backlog first; that was absolutely right.
(Professor Richards) I think I said when I was last
here that there has been a learning curve on all sides. One of
the things we have committed to do between the Department of Health
and NICE and in association with other interested parties, including
patient groups, including clinical researchers, including the
pharmaceutical industry, is to convene a workshop this spring
in order to learn from that experience and see how we can improve
190. I have been looking very closely at the
prescribing budget of my local PCG and they are quite heavily
over-spent, I have to tell you, and I think this is a national
phenomenon not just something common to Bolton. That leads me
to ask you, Minister, whether postcode prescribing in this area
of cancer drugs is coming to an end, has it come to an end, or
will it come to an end shortly?
(Yvette Cooper) NICE is obviously the critical player
in this, and I have mentioned the 19,000 figure which is the patients
benefiting as a result so far. We have made very clear that NICE
guidance on drugs is not an optional extra, it is a "must
do". It is something which needs to be picked up by the NHS
and we are substantially increasing the resources for them. I
think you are right, the increase in the drugs budget is one of
the biggest pressures that most areas face. We are getting huge
benefits from that, because one of the biggest areas is statins
in terms of coronary heart disease, and there is a huge impact
as a result of that extra investment in those drugs, and that
spending is having a real impact on patients who were not otherwise
getting the treatment they should be receiving. We are on the
way to dealing with the postcode lottery in cancer drugs. We have
made immense progress so far with the NICE guidance being introduced,
and now what we need to do is make sure that as new drugs come
on stream those are picked up and that no postcode lottery develops
191. Is that being monitored closely? Are you
looking at all the prescribing authorities?
(Yvette Cooper) It is being monitored very closely.
Whenever we have any query raised with us that a particular area
might not be funding a particular NICE drug or assessment properly,
we certainly do investigate that and follow that up, because that
is clearly extremely important.
192. The final question I have, and I expect
you can guess what it might beyou do not need to phone
a friend or anybodyis that the previous Committee recommended
a National Cancer Act. You know we took it very seriously and
it is being discussed among the cancer movement, you might say,
thinking it would be very helpful to promote the ambitions we
all have. How does a National Cancer Act grab you at this moment
(Yvette Cooper) The National Cancer Act in the States,
as I understand it, is tied to research. I do not think we need
a National Cancer Act on research when we have the immense progress
that is being made already in terms of co-ordination between the
different organisations and so on. I think the US is in such a
completely different situation on this. In the States a 45 year
old woman who has breast cancer and does not have private health
insurance may not be able to get the drugs she needs, here we
have an NHS with funding going through the NHS to support treatment
for that woman for cancer free as of right. So we are in a very
different situation and I think that to separate out cancer funding
from other areas of the NHS by statute would actually be a retrograde
step. I think the Committee is right to highlight the importance
of improving cancer services and co-ordinating the whole cancer
strategy right through from prevention, treatment, palliative
care, research and so on, but no, I would not support a National
Cancer Act. I just think we are in a completely different situation
from the US.
193. You did say you did not need a research
institute tooit burns in my brainand that came about.
I think a National Cancer Act would supplement and help that;
that was our thinking behind it from our experience visiting the
States. You are turning your face against it at this moment?
(Yvette Cooper) I do not think we need legislation
in order to deliver the improvements that we need when it comes
to research. In the States they do not have a government-funded
NHS. By having a government-funded NHS we have huge potential
to make a massive difference around cancer or around whatever
the other priorities may be, without needing to bind ourselves
any more by statute to do so. In the States they do not have that
publicly funded system, so inevitably they have to work within
a different framework. I think for that reason we should be proud
of what is distinctive here, which is the NHS, and also the potential
that that gives us which they do not have in the States or in
certain other countries, and make the most of that in order to
deliver the improvements we need.
Chairman: Minister, thank you very much for
your frankness, and Professor Richards and Dr Hamilton, thank
you very much for taking the time and helping us finish our inquiry.
We will be putting our report out shortly. Congratulations for
all the work you have done, and we are very proud to have played
our little part in it. Thank you very much for coming.