WEDNESDAY 6 FEBRUARY 2002

__________

Members present:

Dr Ian Gibson, in the Chair
Mr Parmjit Dhanda
Mr Tom Harris
Dr Brian Iddon
Mr Tony McWalter
Geraldine Smith
Bob Spink
Dr Desmond Turner

__________

YVETTE COOPER, a Member of the House, Parliamentary Under-Secretary of State for Public Health, Department of Health, PROFESSOR MIKE RICHARDS, National Cancer Director, Department of Health, and DR RUSSELL HAMILTON, Director of Research & Development, NHS Executive South West, examined.

Chairman

  1. Welcome, Minister, Professor Richards and Dr Hamilton. Thank you very much for coming to help us with our inquiry, which is really a completion of the work that was put in a few years ago at cancer services which the government has responded to magnificently. Things are beginning to happen, and really we are trying to find out what has happened and what more might need to be done and how we can support that effort. Do you want to start with a statement or, since we only have 45 minutes, perhaps we can dive ahead. We hope we can prevail on you to answer most of the questions but, if you need your sidekicks to help, then we are quite happy with that too. We are concerned about the Government's commitment to match the charitable funding of cancer research for 2003. Sir John Pattison told the Committee that funding was already about 50/50 and the charities we spoke to, of course, as you have noted probably were sceptical about this claim, and the Department of Health has followed up by saying that Government expenditure on research for 2001 was 190 million which represents an increase of about 72 million since 1999, which is welcome. Can you give us a breakdown, please, of the specific areas in which this 72 million has been spent? For example, is the Cancer Cell Unit at Addenbrookes in Cambridge for the MRC included in this particular figure? I know Professor Richards is an expert on finance these days but perhaps, Minister, you have an answer to that for us.
  2. (Yvette Cooper) Whilst I am very keen to answer as many of your questions as possible, Chairman, I think you are starting at a level of detail that I may defer to the experts on. Could I just say generally that the Committee asked us to look in more detail at the investment in cancer by the various arms of the government and so we have done that. We have been through every area itemising what the cancer spend is, and that is the information we have set out for you and I am very happy to answer as many further questions on that as you want to put. I think what is important here is to make this very transparent because, as part of the work of the National Cancer Research Institute, which again was one of the recommendations of the Committee, we need to co-ordinate that expenditure on cancer research and so we need to be very explicit about where that money is going and what difference it is making in order to co-ordinate it better both with the work being done by the charities but also the work being done by industry as well. That is why we have set it out. Was your specific question on the 72 million?

  3. Yes.
  4. (Yvette Cooper) This is the NHS support for projects. Perhaps one of my colleagues will answer the exact question.

  5. There is a question about a memorandum you have mentioned that we may not have received yet.
  6. (Yvette Cooper) We have not replied to the Clerk's letter yet which is asking for detailed information on this. I am very happy to send that to you if you want to come back to that.

    (Dr Hamilton) With respect to the Department of Health, it spent 83.8 million on cancer research in 2000/2001. This includes 73.2 million on NHS support for projects founded by the research councils and the charities. The health departments and the devolved administrations in Scotland, Wales and Northern Ireland contributed a combined 12.2 million and that figure can be broken down into its components as well. The Wales Office of R&D spent 2.8 million; for Scotland it was 8.6 million and for Northern Ireland 1 million. We have asked the Medical Research Council to estimate their expenditure on cancer research in 2000 and 2001 and their early estimate is 58 million. They should be able to provide a firmer figure on that very soon. The Higher Education Funding Council have estimated that the universities spend 26 million on cancer research. They cannot provide a more accurate figure than that; they produced estimates between 26 and 30 million. We took the lower figure. In total, other research councils contributed 9.9 million. This is made up of 43,000 from the Economic and Medical Research Council, 3.5 million from the Engineering and Physical Sciences Research Council, and 6.34 million from the Biotechnology and Biological Sciences Research Council. If you add those figures up using a simple calculation, the figure comes to 191 million.

  7. Thank you for that information. So you do maintain that it is one to one really with the charities in that case?
  8. (Yvette Cooper) Given that the assessment by the charities has been done is about 180 million of charitable research, obviously if there is any other assessment of that spend or calculation then we will look again at it, but that is certainly, as we understand it, the best estimate available. What is worth bearing in mind as well is that the 190 million that we have calculated is before the additional money set out in the cancer plan to be spent on, in particular, the National Cancer Research Network which will end up being an additional 20 million a year once that is fully up and operational.

  9. But you will understand that people are suspicious that it comes out to close to 1:1 in the sense that people might argue "Are we really comparing like with like?". Are we comparing the same, or are you adding in figures that will have been funded for the NHS which are pertinent to cancer care and treatment and so on, but would have been there anyway?
  10. (Yvette Cooper) I think the assessment we did was not to look at cancer care but at cancer research, but it is certainly true that the NHS would pay for different aspects of the research than the charities because the NHS funds the infrastructure that will carry out a lot of the trials, but I think that is relevant because in other countries and other health systems you might have to pay for that out of the charitable spend or out of the direct research budget. So I think it is important to count that in because it is money that the NHS is investing in supporting cancer research as well.

  11. Yes, but it is a question of how we define cancer research. Some of us would have different definitions, I am sure. Patient care is obviously - you can have research into patient care and trials and so on, but how much of that money is for real research into asking questions where we do not know the answers and not just the normal care that our great National Health Service provides? That is the suspicion I think around the country.
  12. (Yvette Cooper) Our assessment is that the 73 million is all additional. It is research and on top of the care that might be being provided in other areas, where the research is not taking place.

    (Professor Richards) I would endorse that. I believe this figure of 190 million is the best we can come up with at this stage and I believe it is all research costs, not care costs. It is the extra cost, some of that 73 million, which is needed to support research. I think I would just reiterate what the Minister has said: that as we get more information on this through the creation of the database at the National Cancer Research Institute, it will be much more transparent to everybody what this research is and what it is covering.

    Dr Turner

  13. You will forgive us for still feeling somewhat confused because after all, as a result of our report and the response to it, the Government made the commitment to increase research funding to match the work of the charities which, by implication at least, accepted that there was double the investment into research coming from the charities. It seems to me that in producing this figure of 190 million, you have got to that very quickly. Are you saying that this is because of new money or is this in fact an accounting exercise, and could it be that the money has been spent before, or is being spent on cancer research, but not classified as such? Is this a re-badging exercise?
  14. (Yvette Cooper) No, I do not think so. When we made the commitment to match the money spent by the charities, we certainly never accepted that the charities were spending double what was being spent by the NHS. We have never accepted that as an assessment or what was being spent by the Government as a whole. When we did the first assessment of the kind of ballpark calculations of what was being spent on cancer, I thought at that time that we would need to increase the investment to match the money being spent by the charities, but we were at that stage very clearly planning to increase the spending by at least another 20 million a year as part of the cancer research networks, and the rough estimates that we had when we first looked at this was that that additional money would take us up beyond matching the spend by the charities. When we have looked into this in more detail and done the full calculations and got the information back from the different organisations that contribute to this, and when we looked at the most recent figures for 2000 and 2001, that added up to the 190 million that we have set out for you but it does not detract from our commitment on top of that still to spend the additional 20 million which is what we had decided when we announced the National Cancer Plan. So it certainly does not mean that we have changed our position that we are not going to increase the investment: we are. We have done the detailed look at the figures that the Committee asked us to, and it has come out higher when you include the additional organisations and when you look at the most recent figures than we had originally expected. That is very welcome but it does not detract from the need to spend the additional 20 million and from our commitment to spend the additional 20 million as well.

    Geraldine Smith

  15. Minister, are you aware of NHS Trusts using Cancer Plan funds to reduce a debt, for example, and not using them for the appropriate reason? Have you any examples?
  16. (Yvette Cooper) I assume you are not talking about on the research front but on the general money allocated for cancer services?

  17. Yes.
  18. (Yvette Cooper) We are obviously concerned to make sure that the targets that we have set in terms of the Cancer Plan and the improvements that we have set out in the Cancer Plan happen in practice. We know that there has been concern from some areas about making sure that the money gets through to the front line in order to deliver those improvements and we are monitoring the situation. We have monitored at the beginning of the spending round that different areas had to put in their assessments, and we will do that again at the end of the financial year. We are also putting in place improved performance management structures to monitor not simply the inputs but also the outputs, which I think is most important here - how they are doing in terms of delivering their targets on waiting times and in terms of implementing the guidance and improving outcomes guidance that we have set out. So we are aware of concerns; we are keen to make sure that improvements in cancer take place; we are very clearly monitoring the position, and we will certainly review it to see if new structures need to be put in place to reinforce that.

  19. So has it happened? Have they been using Cancer Plan funds to reduce debts?
  20. (Yvette Cooper) We have made it very clear that this investment was allocated to them to improve cancer services, and that is what we expect to see happen and they will need to account for the investment at the end of this financial year. At that point we will be in a position to see where the money has been used and what decisions have taken place at each local level.

  21. Is that not too late, once it is the end of the financial year, if they have used the money for something else? There is not much you can do about it?
  22. (Yvette Cooper) We have given them very clear direction that we expect to see these targets met, and we have set in place new monitoring proposals including peer review assessments that are taking place, and I think what we will have in place from strategic health authorities will be a big step forward as well in terms of the management framework. But we have made a choice about this which is to say that, in the end, the line by line decisions about what money gets spent where, have to be taken at the local level: it cannot all be directed from the centre. What we need to do is manage the output and not simply expect the Government in Whitehall sets down every single detail of where the money gets spent. That means we need to make sure that there are clear targets in place, especially when it comes to a clinical priority like cancer, and that there are proper monitoring arrangements. Those are still developing because of the development of the Strategic Health Authority so that will take time to bed down properly, but I think that is the right approach rather than trying to micro-manage everything from the centre.

    Geraldine Smith: Just coming back to that, it seems you cannot have it both ways: you either say to the Trust, "This is money for cancer; you spend that money dealing with cancer services", or you do not. If you are not going to take any action if they do not spend on it Cancer Plan and cancer care, then there is no point doing it. You might as well leave them to manage the services and spend the money how they know best. I have an example in my own local Trust. One of the problems they have is they followed the Government's policy, spending money how they have been directed to spend it, but as a result they are short of money in other areas. Is it not just a case that basically we need more money in the Health Service?

    Chairman

  23. Why not just give to the NCRI all of the cancer money? The cancer charity money goes there, so why not put the Department money in too?
  24. (Yvette Cooper) Because that is for research and, whilst research is important, it is not the entire component of the Cancer Plan so we do not think that all the money should be funded through research channels. I think, for example, we have to make sure that we keep investing in the prevention side and other sides, and often the research approach can end up being very much concentrated on drugs and treatments and we need to bear in mind the whole gamut of issues relating to cancer as well. So I would not accept that that would be the right funding stream. To deal with your point, the framework we have to move to is managing by output and by delivery. That does not mean saying, "That is it; we just hand over the money and it is up to the NHS what it does with it and we do not care any more" - quite the reverse. We set them clear outputs in terms of the targets they need to meet on waiting times and so on, and we have to manage their ability to meet those. Some will be able to do that more efficiently than others, especially where they have the cancer collaboratives in place. They will be able to do that more effectively given the resources they have than others, and it will in the end be up to local areas to make those decisions. However, we have done the assessment about the amount of money we believe is needed in order to deliver those changes. We do expect the changes to be delivered: we have allocated them the money in order to do so: they may choose to spend additional money on it. If your conclusion is, "Does the NHS need more money across the board?" - yes, definitely it does. Of course. It is getting more. We all know that a real increase is around 7 per cent above inflation compared to 3 per cent above inflation which has been the historical average over the last 30 to 40 years, and we need to maintain the substantial increases and that will take time. So we need to be realistic that we cannot solve all the problems of historical underfunding all at once. Yes, of course, there are still pressures in the NHS - we know that very clearly - and there will be local pressures which will often be very strongly felt and, yes, in the end a lot of additional money is needed, but only so long as the money is accompanied by the right forms to make sure it is spent well as well.

  25. Does all the research money go through the NCRI?
  26. (Yvette Cooper) All the research money has been co-ordinated by the NCRI. When we had this discussion about what an NCRI might be a couple of years ago when your Committee was advocating this, the points we made then were that we would be uneasy about a bricks and mortar institution that effectively centralised everything, and I think the strength of the approach with the networks is to spread everything outwards across the country so that we have people able to get into trials everywhere in the country - not simply a few big research centres but across the country - so I think there is a post-code lottery of research issue here that is quite important to address. I think it would be a shame if all of the money was too tightly centralised but I do think it is right that it is properly co-ordinated by the different organisations working in partnership through the NCRI, and I think the closer that they are able to work in partnership, the more it will look like the sort of single co-ordinated funding stream, even though the individual partners are making their own decisions about where best to put their money and resources

    Bob Spink

  27. While we are talking about the Cancer Plan and delivery at the sharp end, could I ask Professor Richards what the policy is on centres of excellence? Would you confirm that there will be in each local area retained units for the common cancers that make up about 50 per cent - that is lung, breast and colorectal? You are looking at a target of about a million population to support a centre of excellence to deal with the other cancers, and you will know that this is causing a lot of unrest around the country where there are centres of excellence that people want to retain with smaller than the guideline one million population, such as at Southend. I wonder what can be done to retain those centres of excellence, not to be throwing the baby out with the bathwater on these?
  28. (Professor Richards) The approach we have taken here is to develop evidence-based national guidance. This started in 1996 with the breast cancer guidance. That was followed by the colorectal cancer guidance in 1997, by the lung cancer guidance in 1998, by gynaecological cancer guidance in 1999 and, most recently, at the beginning of 2001 by the guidance on upper gastrointestinal cancers - cancers of the oesophagus, stomach and pancreas. In each, we have committed ourselves to making this guidance evidence-based. It is very complex but we look at all the evidence worldwide in coming to our conclusions. For example, with the common cancers of breast and colorectal, there was evidence certainly for breast cancer that, if a surgeon was treating more than thirty patients a year, that was associated with better outcomes than if they were treating less than that per annum. There is also evidence to support the use of specialist teams - that is, radiologists, pathologists, oncologists, surgeons, nurse specialists, palliative care specialists - working together. But with a disease like breast cancer you can achieve those numbers because breast cancer is, sadly, very common in virtually very district general hospital in the country - not all but most. When we come to cancers like oesophageal cancer and stomach, the picture is somewhat different. They are less common, intrinsically, and also less of those patients undergo surgeries, so, for example, only about 30 per cent of patients with oesophageal cancer will undergo a major resection. We looked at the evidence, both from this country and abroad, and there is a relationship between hospitals and/or doctors that treat larger numbers of patients in a year and better outcomes - better outcomes partly in relation to the thirty day peri-operative mortality rates but also in relation to longer-term survival rates. The guidance therefore recommended that surgical services for patients with esophagogastric cancers should be concentrated in centres serving populations of one million or more. For pancreatic cancers the recommendation was that it should be at the level of two million or more. Clearly that will take time to implement, and one has to look very carefully at the impact at a local area. I am aware of the issues in Southend: Southend is, by cancer network standards, a relatively small cancer network serving a population of 680,000, and so does not fulfil that one million population. It is an excellent cancer service provider and certainly, in liaison with the eastern regional office of the NHS, I have agreed to get involved there to see what we can do for the best interests of local patients, absolutely confirming that Southend is a cancer centre that will continue to be a cancer centre and making sure that we can design the service that does meet the guidance. I would just add one further point: I was involved in a meeting about two weeks ago with the association of upper gastrointestinal surgeons: we went through the rationale for the guidance and they endorsed the guidance, but also endorsed the need for there to be an implementation plan and it could not be done overnight.

    Geraldine Smith

  29. Finally, just to come back on this, I feel quite strongly that if we are telling the public that we are spending money on cancer plans and we are funding those plans, and NHS Trusts are using that money for something else - for very good reasons because they have underfunding in other areas - we are not being completely honest with the public. We are saying we are funding and we are saying there are certain amounts of money available but it is not getting through at the grass roots. I think we have to be honest with people and have an honest debate about the Health Service, because I think overall we need to put more funding in and I think the British people have to be aware that they have to pay for that funding, so I think we need a more honest and open debate. Just speaking with my local NH Trust manager, I say to him, "Every year you are getting more money - I know you are, I have seen the figures - so why is your deficit worse than ever?", and he says that it is because the Government are asking them to do so much more in the Health Service, quite rightly so. All the preventative measures you have mentioned to make sure people do not get cancer in the first place all cost money, and when we ask those managers in the NHS Trust to implement those policies we have to give them funding to match that. So I guess I am just appealing for more money for the NHS.
  30. (Yvette Cooper) I agree that we do need more money for the Health Service. We have seen substantial extra investment going in and we are seeing it making a real difference already in certain areas. There is a long way to go but it is making progress already, and I would agree too that that does mean a national debate about the kind of Health Service we want to see, and that is exactly what the Wanless Report was all about. I think it is also possible for the NHS to do more. It is true we are dealing with a backlog of underfunding and with a long, long legacy of under-investment in the Health Service, but it is also possible for the NHS to do more. The cancer collaboratives are one of the best examples of this. With very little extra investment and just by reforming the way they do things, they are having quite remarkable results in terms of cutting waiting times. There are some examples where they have cut waiting times by 50 per cent and so on just by changing the way they provide the service and re-organise it, so it is not just about money; it is also about the reform and the way we do things as well. Finally, on cancer, we are clear that we have made additional investment available for cancer to the NHS and we also have clear targets that we expect them to meet as a result. We will monitor the situation and look very carefully at what this looks like at the end of this year and look forward to what we need to put in place to make sure we deliver cancer improvements we have set out in the National Cancer Plan. It is one of the priorities, so we are determined to deliver on it, and I think we have to make sure we have the right mechanism in place, as you say, to make sure the money reaches the clinicians on the ground and delivers the improvements we need.

    Mr McWalter

  31. I am extremely confused about the answer you gave to the question before last, because you were talking about cancer research and then you were talking about assessing outcomes, and you effectively slid from talking about cancer research, where outcomes are naturally very difficult to quantify and delivered often over a much longer time period and so on, to talking about outcomes which are effectively the successes of treatment. That made me smell a rat because it felt to me as if the money that you are talking about for cancer research was, some of it, subtly money for cancer treatment because, if you are talking about money for research, it is very hard to specify those outcomes. I am also worried about whether there is some double-accounting in the system as well. If you take some translational cancer research, for instance, in palliative care or where you might begin to get somewhere close to outcomes-based research rather than the general case which is not like that, then you might give us a figure and say, "Look, we have spent all this money on research into palliative care", and that is cancer expenditure so you give us a figure of 20 billion or whatever for that, and then you go to the Health Committee and they say, "How much are you spending on palliative care?", and you say we are spending 20 million. In other words, you get the same sum of money doing the rounds. I am concerned, first of all, that there was a real slide in what you said away from research into treatment, and that made me suspect that the funding figure included a treatment figure as well as a research one, and, secondly, I would like a much clearer statement of the breakdown of this figure so that my concern that there could be some double-accounting is obviated, and the way you could do that is by telling us, for instance, say what a global figure for palliative care is and then what proportion of that would be used for research on effective methods of palliative care and what proportion is broken down into the cancer part of it.
  32. (Yvette Cooper) Can I begin by trying to separate out completely two issues - research and investment in improving cancer services?

  33. I separated them, but you pulled them together again.
  34. (Yvette Cooper) Yes. I think you are right, and what I have been trying to do is answer different questions on research and on funding coming one after another, so let me try and make my answer clear and I apologise if I have not done so. The discussion I was having on the cancer services and on outcomes would very much amount to treatment, about services, about improving services across the board, about what we expect the NHS to do everywhere right across the country. So that is one whole set of arguments about the investment going into cancer services. Separate from that is another debate about cancer research and how we improve it and invest in it. I at no stage meant to have the discussion about how we manage the outcomes in the NHS that local hospital trusts are delivering; at no stage did I mean that to apply to the discussion about cancer research and the way in which the national cancer research applied.

  35. But I am talking about the 190 million.
  36. (Yvette Cooper) I agree. The issue about the 190 million is about research spent and is completely separate from the issue about how we manage the outcomes in the NHS. I think probably the concerns you have about the breakdown of the 190 million seems to me to focus on the investment by the NHS in supporting research. I think we will look again to see what additional information we can provide you with that might provide you with some reassurance about that, but we have been very clear in our intention in calculating that money to tot up the money which is supporting research - not the money we expect every area to be investing in improving outcomes but the money that is supporting research - so we will look again at what additional information we can provide for you but I do not think there is more I can add at this stage that would not simply confuse matters further.

    (Dr Hamilton) It may be helpful just to set out how we count funding that is related to research within the NHS, and we identify three different types of costs: research costs, service support costs and treatment costs. They are the costs that are all associated, broadly, with people being in research within the NHS. The first costs, research costs, are the direct costs of undertaking research - designing research, collecting and analysing the data, writing it up - and a key characteristic of those costs is that they stop when the research stops. The second costs, service support costs, are those directly associated with the research study in the NHS - additional patient tests, additional bed days, additional outpatient attendances - and the key characteristic of those is that they stop when the research stops, so they are directly associated with research. Those two costs are the costs that we have identified and put into the figures that we have provided for you. The third cost, treatment costs, are the standard costs of being treated in the NHS whether you are in a research study or not, and those costs are not identified either in the figures for you, and, indeed, we do not identify those figures separately. We do not currently identify what the treatment costs are for patients who are in trials because it is a health care cost, so the research and development budgets within the Department of Health and the NHS only cover the first two costs - research costs and service support costs - and they are the costs we have presented for you.

  37. When you provide those figures - and I am very grateful for the answers given - can you also make clear how NHS infrastructure costs are apportioned? That obviously is going also to be an important component of us making quite sure that these research figures are pucker.
  38. (Dr Hamilton) Certainly.

    Mr Harris

  39. Could we talk specifically about the National Cancer Research Institute? The Committee has heard previously quite positive comments about the Institute but one criticism that has been raised is that, apart from the organisations and individuals with which it is involved, its profile is quite low beyond that circle. I do not know if you agree or not with that charge, but I just wondered how you viewed that situation?
  40. (Yvette Cooper) I think that may well be the case at this stage. It is still very early on in its life and I think it would probably be surprising if it had a huge national profile at this stage. The more that it does in practice the higher its profile will become, but it may be something that the various members of the Institute will want to consider at some point as it develops. I think at this stage it is probably not really surprising.

  41. I think that was one of the few criticisms. The general information coming across was more positive than that. We did hear from one charity whose representatives were saying that they were wary of being involved because of the high cost of the contributions they were expected to make to the NCRI. Do you think those contributions are set too high and how are the levels of those contributions made? Do you think that, like that charity, other organisations reflect that experience? Do you think that there are a wider range of organisations who are put off becoming involved because of the high costs?
  42. (Yvette Cooper) The decision about the funding of the Cancer Research Institute was that it should be 50/50 funded by the public and charity sectors. I will maybe ask one of the others to comment on how that is broken down within the sectors, but I think there are huge advantages to having the Institute itself, the running costs, funded on a 50/50 basis because I think it is important that it does really represent both the public and charitable investors in cancer research, and it really does represent them and work on their behalf, otherwise the danger will be that it just becomes the cycle for one or the other and that would be a problem. I think it would be a mistake for it to be purely public sector funded for that reason. It also does need, of course, running costs. If it is going to do the things we need to do in terms of setting up the database, to map the entire range of cancer research that is taking place right across the country, to co-ordinate that properly, to have a useful database that can then be used to co-ordinate research into the future, obviously that needs investment to do that.

    (Dr Hamilton) On both points about the profile and on the funding of it, I think we would agree with what Gordon McVie and Paul Nurse said in general to this Committee, that it does at the moment have a relatively low profile but its work is how you should judge it and it has been very successful so far. The NCRI itself and its forum and the Cancer Research Fund and its forum have both been very successful in establishing major initiatives under Prostate Cancer Research, National Cancer Research Network, National Translational Cancer Research Network, and the database that the Minister has just explained. All of these did not exist before that organisation came into being and they are fundamentally changing the way that cancer research in this country is perceived and will operate in the future, with respect to outputs rather than profile. With respect to its funding, the secretariat, as the Minister has said, is funded on a 50/50 basis of public funding and charity funding, but it is not primarily a requirement of NCRI membership that the partners commit to make a big contribution to that. The larger research charities pay the larger share of the 50 per cent that is their contribution, so I cannot understand why it would be a barrier to involvement within it ---

  43. But are there occasions when smaller charities, for example, would have no contribution to make or be proportional to their size?
  44. (Yvette Cooper) I would need to look into that but my expectation would be that there are small charities that are members of NCRI that make no direct contribution.

  45. Can you send that information?
  46. (Dr Hamilton) Yes.

    (Professor Richards) Adding to that, for a start the overall running costs have deliberately been kept small and the Secretariat has deliberately been kept small compatible with doing the tasks that are very important. The partners in this agreed that it would be symbolic that it should be a partnership and therefore we should have contributions from both Government and from the charity sector, and I think we have tried as far as possible to make membership open to research charities, provided they fulfil certain criteria. I think we have set a lower limit of around one million turnover in terms of the research that they are doing in a year: we have also said that these should be charities that are conducting research that undergoes peer review. We have to make sure it is high quality research that they are undertaking and, thirdly, and importantly, that they are prepared to contribute to the database that we have just been taking about. Within that, however, I think most, if not all, of the charities we have talked to are very keen to be members of the new partnership.

    Mr McWalter

  47. 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!
  48. (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.

  49. 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?
  50. (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

  51. 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?
  52. (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.

  53. 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?
  54. (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.

  55. So it is only roughly 2 million a year?
  56. (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.

    Chairman

  57. 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?
  58. (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.

  59. 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?
  60. (Professor Richards) Of course it is essential.

  61. We will watch that space.
  62. (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

  63. 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?
  64. (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

  65. 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?
  66. (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

  67. 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?
  68. (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.

  69. Is that being monitored closely? Are you looking at all the prescribing authorities?
  70. (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.

    Chairman

  71. 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?
  72. (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.

  73. 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.