Select Committee on Science and Technology Minutes of Evidence

Exmination of Witnesses (Questions 180-193)



Mr McWalter

  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 liked it!
  (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 those?
  (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 networks completely.

  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 patient—on that matter at least.

Dr Turner

  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 well—and that totals to £11 million over the five years.

  184. So it is only roughly £2 million a year?
  (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.

Dr Iddon

  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 chaos.

Dr Turner

  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 McVie's criticisms?
  (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 the process.

Dr Iddon

  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 as well.

  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 be—you do not need to phone a friend or anybody—is 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 in time?
  (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 too—it burns in my brain—and 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.

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