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UNCORRECTED TRANSCRIPT OF ORAL EVIDENCE To be published as HC 485-i House of COMMONS MINUTES OF EVIDENCE TAKEN BEFORE THE COMMITTEE OF PUBLIC ACCOUNTS Monday 21 March 2005
CANCER - THE PATIENT'S EXPERIENCE
DEPARTMENT OF HEALTH AND ST THOMAS' HOSPITAL SIR NIGEL CRISP KCB and PROFESSOR MIKE RICHARDS
Evidence heard in Public Questions 1-62
USE OF THE TRANSCRIPT
Oral evidence Taken before the Committee of Public Accounts on Monday 21 March 2005 Members present: Mr Edward Leigh, in the Chair Mr Brian Jenkins Jon Trickett Mr Alan Williams ________________ Sir John Bourn KCB, Comptroller and Auditor General, National Audit Office, further examined. Ms Paula Diggle, Second Treasury Officer of Accounts, HM Treasury, further examined. REPORT BY THE COMPTROLLER AND AUDITOR GENERAL TACKLING CANCER - IMPROVING THE PATIENT JOURNEY (HC 288) Examination of Witnesses
Witnesses: Sir Nigel Crisp KCB, Chief Executive, Department of Health and Professor Mike Richards, National Cancer Director, St Thomas' Hospital, examined. Q1 Chairman: Good afternoon, thank you for being so patient. I do apologise, Sir Nigel, that we have had to start this Committee late; it has not happened before and I am very apologetic. Today, we are talking about cancer, the patient's experience, and we are joined by witnesses from Department of Health. Sir Nigel Crisp of course is the Chief Executive of the Department of Health and Professor Mike Richards is the National Cancer Director; you are both very welcome. Could I please start, Sir Nigel, by referring you to the Comptroller and Auditor General's report. Could you please look at figure 5, which you can find on page 10? If you look at the top line of that figure 5, you will see that 42% of patients with cancer were not referred urgently by GPs and if you look at the bottom line, 20% waited more than a month to see a specialist. I know that there are some instances of difficulty of diagnosis, but even allowing for that, is this figure not too high? Sir Nigel Crisp: Yes it is, but, as you say, about 40% of people who are subsequently found to have cancer did not come through the urgent referral system. The reason for that is that they were not identified right at the outset by the GP as being likely to have cancer. We know that there are some reasons for that which will mean that some patients' GPs simply will not be able to identify, but we think that we can get that number of 40% down to perhaps about 20% by working with GPs. Perhaps as important is that within three years we shall see the maximum waiting times come down to 18 weeks for everybody; we are moving everyone, the urgent and the non-urgent alike, into a much shorter waiting time. Q2 Chairman: I think with breast cancer your figures at pretty good, are they not? Eighty per cent of people with breast cancer are seen within the requisite period. I just wonder why we cannot do that with other cancers. Professor Richards: I think with breast cancer effectively we are moving towards a position where we see as many people as possible with a breast problem within two weeks. We know that for every person sent to a breast clinic, only about one in 10 or one in 15 actually has cancer, but obviously it is good practice, wherever possible, to ensure that all patients are seen quickly. To a large extent we are managing that in some places with breast cancer, but not in all as yet. Q3 Chairman: If you now look please at the table which you can find on page two, you will see half way down that it says a third of cancer patients do not find doctors' explanations of their condition, treatment or tests very easy to understand. Why is that, do you think? Professor Richards: Again, the first thing to say is that the explanation of cancer, the tests, the treatments is complex and it is complex to explain. That is why we put such emphasis on making sure that clinicians involved in cancer have good communication skills and it is why we back that up with written information wherever possible. I think that one of the things it is important to say is that the proportion who do understand what is going on is going up and I think this report shows that quite well. So there has been an improvement in the four years since the previous survey was done by the Department of Health. Q4 Chairman: If we look at paragraph 21, we see there in that paragraph a depressing picture about prostate cancer. Why is that? Sir Nigel Crisp: Perhaps again I may just start off. Of the four cancers that are covered here, we started by giving the highest level of attention to breast cancer, then the other two, and the fourth one that we got to in that order of priority was urological cancers, prostate cancer in particular. This shows simply that we started later on prostate cancer. I think the other thing that it incidentally shows is that the work that has actually been done in those other areas works, so we will expect to see prostate catch up with the others. Q5 Chairman: When? If we were having this hearing in two or three years' time, what would we find out with prostate cancer? Professor Richards: If we look over the four-year period, we know that the breast cancer guidance was published in 1996, the colorectal cancer guidance in 1997 and the lung cancer in 1999, so they all preceded the first survey done in 2000, but just. They have had the full four-year period between surveys in which to go on showing improvement. The prostate cancer guidance, the urological guidance was published at the end of 2002. I would be confident that in another four years from now, we would see prostate having done a major catch-up. I think we have to make sure that happens as quickly as possible and that is why we have asked each of the cancer networks to produce an action plan on how they are going to implement the guidance and why we also have an appraisal programme where we visit every hospital in the country to make sure that they are implementing the national standards. Q6 Chairman: When I was talking to the National Audit Office before this meeting, they said that the majority of people who called the cancer helpline about prostate cancer were actually women enquiring about their husbands. Is that right? There are more women calling than men, which would seem to suggest to me that there is a real misunderstanding amongst men of that age group about what they should do about this. Professor Richards: It is certainly true that men seem to seek advice through helplines less than women, certainly in the cancer field where I know about it. If you look at the internet, that is a different picture, and men do use the internet to find things out, so I do think one has to look at all the different sources of information that there are. Q7 Chairman: We have talked about prostate cancer and if you look at paragraph 23, we can see again that the London region gives less positive responses. Why is that do you think? Sir Nigel Crisp: It is difficult to know exactly why. It is not, as far as we can see, about inputs. The same or higher level of expenditure and the same or higher level of range of services are available in London. Q8 Chairman: Per head? Sir Nigel Crisp: Per head, yes. Indeed it is not about outcomes either, because survival rates are good. It clearly is something to do with their experience directly of working with staff. There is clearly a people issue. We think a significant amount of that may be about staff turnover and that there is higher staff turnover in London than elsewhere. There may be other issues, including higher expectations and other things to do with London, but we need to find out. The people working in London are trying to understand that in some detail, so that they can make some improvement there. Q9 Chairman: If we look at hospices now, and this is referred to in paragraph 3.25 on page 39, they have received extra funding of course, but they still say they are under pressure, they are short of specialist staff. Why is this? Is your extra funding inadequate? Is it going to the wrong places? Professor Richards: We can undoubtedly say that the funding is going to the right places. We have been through a very lengthy and rigorous procedure to make sure that the £50 million that was promised for specialist palliative care is getting to specialist palliative care, that it is getting there based on the action plans that were developed by the local networks and that those action plans were reviewed by panels that had on them people from the Department of Health, the NHS and, most importantly, the voluntary sector as well. We know the money is getting there. The cancer plan acknowledged that the voluntary sector was carrying too much of the financial burden for hospice care and that is why we put in the extra £50 million. They are doing a fantastic job and obviously they are also telling us that they are still burdened. In terms of staff, we are increasing the numbers of palliative care consultants. Some of the money, the £50 million, has gone to appointing more consultants and over the next few years we are going to see really quite a major expansion of consultant numbers. In 2002, the number of whole-time equivalents was 169; by 2008 it is predicted that that will be up to 255, which is an increase of over 50%; by 2015 it is predicted that that will reach 383, which is more than double. So we are on track to have more consultants but we need them. Q10 Chairman: Well, I might ask you more about this on Wednesday, but you will have read in the Sunday Times yesterday about a large report from the King's Fund about your organisation, Sir Nigel. I just wonder whether there is anything here in terms of an accusation that the money has been put in by the government, but it is not finding its way to the front line in sufficient quantities. Some obviously is. Professor Richards: I think here that we can categorically say that the money is getting to the front line and for the purposes for which we designed it. We have been tracking that. We have been doing it through the national partnership group on palliative care and that group, which includes representatives from the voluntary sector, has agreed that the money is getting where it is meant to be getting. Yes, they want more, but they are agreeing that the money has got exactly where it was intended to. Sir Nigel Crisp: May I make one point on that? As I read that article, it was implying that most of the money going into the NHS was going on staff and then it made the imaginative leap to say that was not money being spent on the front line. Well our front line is staff and the fact that we are employing so many more staff and indeed paying them better in a number of areas is really significant. I thought it was rather an odd point coming from the Sunday Times. Q11 Chairman: Okay, I may come back to that on Wednesday. Lastly, people would prefer to die at home obviously. There is a figure here on page 40, figure 64. Most people do, I am afraid, still die in hospital and would prefer to die at home. So what impact is your initiative on this having at the moment? Professor Richards: If you look across the course of a century, the number of people dying at home has gone progressively downwards. A century ago, 90% of people died at home; 50 years ago it was about 50% dying at home. Now, overall, taking all conditions together, it is about 20%. A lot of that is due to changes in society as much as to do with changes in healthcare; extended families and things like that. We do know that more people would like to die at home and we are working hard to try and make that possible by making sure the specialist care is available, not only in hospices, but going out into people's homes through the community teams that are run across the country and also by skilling up generalists, that is GPs, district nurses and others. We have been doing a lot of work to skill up, first of all district nurses, that was something that we started back in about 2001, and more recently our end-of-life care initiative, which is aimed at GPs and care homes as well, another important area for investment in teaching people about how to care for the dying. Q12 Chairman: Is it a question of who pushes hardest, if somebody insists? Is it down to the patient? Professor Richards: Certainly one of the key things is to elicit from a patient what their preference is about where they wish to be cared for. One of the things we have to do is train staff to elicit that from patients. That is quite a sensitive thing to be asking patients about, but it can be done and there is a very good programme going on up in the North West of the country looking at preferred place of care and how you can both elicit that from the patient and then document it, so that everybody knows. There is also good evidence that where you do elicit that information, people are then more likely to have their wish fulfilled. Q13 Jon Trickett: As I mentioned last time we looked at this subject, my own mother died of cancer last year and so for about two years, I was in and out of cancer wards and also up to the radiotherapy hospital. My mother came home and finally died in a hospice. I did therefore see the full range of care for her and I was incredibly impressed by the skill and patience and sometimes the miraculous work which was done by your staff. I should like to say that by way of preface, because it would be easy to give the impression that a lot of the experience is negative, which it is not, not in my own personal experience anyway. On prostate cancer, I do not think we are doing very well frankly. I noticed, for example, that 68% of prostate cancer patients wait more than a fortnight for referral to see a specialist, compared with 37% for other cancers. Why is that? May I just say that I understand prostate cancer is now the biggest killer of men? It has just overtaken cardiovascular problems. Professor Richards: No, it is not the biggest killer. I think lung cancer is still the biggest killer, but I think it is the second largest. Q14 Jon Trickett: How many men a year die from prostate cancer? Professor Richards: From prostate cancer, about 10,000 in England. So it is a major killer. Part of the reason is that there is huge pressure on services because the number of cases being detected has gone up enormously over a five-year period, probably getting on for nearly 50% between 1996 and 2001 and that is because of the much wider use of the PSA test, the prostate specific antigen test. As you will know, there is a lot of controversy about the value of that test, but one thing which is absolutely clear is that if you have the test, and people are going for the test more, you do pick up more cases. Some of those cases might never have caused trouble during a patient's lifetime but that is putting pressure on the services, on urologists, on the radiotherapy services, a whole range of different services. One of the things that we are doing there is to develop new roles, particularly for nurse practitioners, in assessing patients with lower urinary tract symptoms which could be prostate cancer, but could just be benign prostate disease. That is something that over the next few years we need to do more of in terms of having those nurse practitioners in place to do those assessments. Q15 Jon Trickett: Yes, but even so, on the question of nurses, in 50% of prostate cancer patients, there is no named nurse in charge of the care, which seems to rebut the case you have just made, compared with less than 40% for patients with other cancers. That is not really a satisfactory explanation, is it? Professor Richards: It does not rebut the case I have just made. There are two separate issues here: one is about clinical nurse specialists who provide information, support and continuity of care for patients once they are diagnosed. That is enormously valuable, you are right, we do not have enough of those yet, we are in the process of appointing more at the moment. Separate from that is the nurse practitioner, who performs the initial assessment of patients who may very well have benign disease. We need both of those groups of clinicians to tackle prostate cancer. Q16 Jon Trickett: Why are we not explaining to men with prostate problems the situation that they are in and why are we not referring them to self-help and support groups? Why are we not discussing in sufficient numbers the side effects of the treatment? I think special counselling is required with prostate problems, is it not, because frequently they develop so slowly that a balanced judgment has to be made about whether to operate or not? Obviously the operation itself can have quite severe side effects, can it not? Why are we letting them down in terms of counselling? Professor Richards: You are absolutely right. The explanation of the different treatment options is actually more complex for prostate cancer than it is for some other cancers. For prostate cancer, there may be a choice between radical surgery, radiotherapy and sometimes active monitoring, which means carefully watching the patient, doing the PSA measurements, but not necessarily treating them initially. Again, what we have found is that the nurse specialists are very good at offering advice and helping people to come to the right decision on that, which is the reason why we are so keen to see more nurse specialists in this area. It is also why we are making sure that the doctors are trained in communication skills so that they can explain these things better too. Q17 Jon Trickett: Two thirds of all patients with prostate cancer get no information at all about support or self-help groups as opposed to one third of patients with other cancers. You know, do you not, because I spoke to you, that I encountered two men in one morning in my constituency? I do not know whether you recall the conversation; I certainly do. I went out one morning in part of my patch and encountered one man who had been waiting six months for treatment and nobody was giving him any advice at all. He just stopped me in the street. Bizarrely, later in the morning a second man came to me and both had been diagnosed in May or June and we were then in November waiting for treatment. What on earth is going on? Why is advice not being given? Professor Richards: I think what is happening with prostate cancer is, as this report shows, that it is lagging behind the other cancers, but we have now put in place the guidance and we are implementing that guidance and that is why I am personally confident that we will see major improvements in prostate cancer over the next few years. On the specific point about support groups, I think there are fewer support groups available across the country for prostate cancer than there are, for example, for breast cancer. Part of the reason that they may not be being talked about is that they may not exist. These are services which are in evolution and one of the important things that we have done for prostate cancer is to set up a prostate cancer advisory group at the Department of Health. This brings together key charities like the prostate cancer charity with the Department of Health and with NHS clinicians who are dealing with prostate cancer on a daily basis. They are advising me on any further measures that we need to take on prostate cancer. Q18 Jon Trickett: I am not trying to give you too much of a hard time, but I am told by a senior clinician in my patch who deals with prostates that there are dozens, possibly over 100 men, who have been waiting more than six months for treatment, having had a pre-operative assessment. Does that figure sound plausible? Professor Richards: I would need to be aware much more about what treatment and for which patients. That does not sound right because what we know in practice is that the vast majority of people are being treated within one month of the decision being made that they need treatment. Q19 Jon Trickett: On prostates? Professor Richards: On prostates. Q20 Jon Trickett: Given the nature of prostate cancer, it may be that the clinical decision has been taken not to do a surgical intervention, but the fact is that the patients do not seem to be aware that that decision has been taken. I cannot think of anything more isolating for a human being than to be left at home knowing that they have prostate cancer - and I have told you this myself on the telephone - that the cancer has not yet breached across into other organs and not to know what is happening and to be ringing in weekly asking "When am I going to be told something?". There cannot be anything worse than that. Professor Richards: Again, if you want to put me in touch with the person --- Q21 Jon Trickett: I did. I gave you the names by e-mail. Professor Richards: You certainly have not told me about the number of people waiting. Q22 Jon Trickett: Finally then on prostates, how much additional resources do you think are required, or are you putting additional resources in to try to tackle the backlog which appears to be larger in this particular area than in other cancers? Professor Richards: We are putting a lot of extra resources in to areas that are directly relevant to prostate cancer. Clearly one of the areas that we are investing in is radiotherapy, which is one of the treatments for prostate cancer. There, we have doubled the number of radiographers in training in order that they can operate the radiotherapy machines and we have put in more new radiotherapy machines than ever before. We still do not have enough and I am in no way complacent about that, but we have put in place the steps so that people can get radiotherapy without delays. On the surgery side, the delays are not usually so much of a problem, but, again, we are monitoring that very closely to make sure that is the case. Q23 Jon Trickett: Are there patients with cancer who are unable to receive timescales for radiotherapy treatment because of the lack of radiotherapists? Professor Richards: That should not be the case. They should always be given a time when they will be having their radiotherapy. As I have said, there are unacceptable waits for radiotherapy, I have made no secret of that, and we are tackling them as hard as we can go. Q24 Jon Trickett: Would it surprise you to know that I told your office of the case of a woman who had had a mastectomy and who received a letter saying that there were no radiotherapists and no prospect of her having any radiotherapy? Professor Richards: I am not aware of you having let me know about that particular patient, because if you had, I would certainly have looked into it. Q25 Jon Trickett: Do you think she is the only person in the country or do you think there are others in her situation? Professor Richards: I have said already that I believe that there are unacceptable waits for radiotherapy. I have also said that we are tackling those as hard and as fast as we can. I think we have a very reasonable programme in place. This is because historically we have not been training enough therapy radiographers and that is why we have doubled the number in training. That is the main obstacle that leads to radiotherapy waits. Q26 Jon Trickett: Could you just give us a note on the additional amounts of money dedicated to prostate cancer which you want to see going in and perhaps some targets in terms of benchmarking progress, so we can measure progress over the years to come? All I have said does not detract from the first point I made, which was that I think you have some absolutely wonderful staff in the NHS dealing with cancers. I would not want to leave any other impression than that. Professor Richards: I absolutely agree with that and thank you for that. I would also say that when the National Institute for Clinical Excellence produced its guidance on urological cancers, within that guidance there were estimates for the amount of extra funding that was required for urological cancers, and we can provide that to you. Q27 Mr Jenkins: I should like to echo Mr Trickett's comments with regard to the staff and pass our thanks on to your staff in the service for the work they do for people. Sir Nigel Crisp: We shall make sure we do that. Q28 Mr Jenkins: I was rather surprised, listening to Mr Trickett, because a friend of mine, only a week or so ago, told me about a mutual acquaintance who had been to see his doctor and from the time he saw his doctor to the time he came back home after having an operation to remove his bowel cancer it was four weeks. I was surprised at that. I thought four weeks was a very fast time. I thought it might be about five or six weeks, but I thought four weeks from the time he saw his doctor to coming back home was marvellous. It really was a standard to which we should aspire for all patients across the country, though I know about the difficulties with regard to staffing in different areas, different trusts etcetera. The one thing which does concern me, and I know it concerns a lot of people, is that when you have people going into hospital to see a consultant and they are in a state of anxiety, sometimes when they are talking to the consultant, they do not hear every word the consultant utters. They hear the good sentences, the good news but they tend to shut out the bad news. I was surprised to see that only 10% of the patients receive a written report on the consultation. That is a contract in effect between the consultant and the patient and NICE laid down a stipulation with regard to it being 100%. How do we get to 100% for this arrangement? Sir Nigel Crisp: I will make a couple of points and then bring in Professor Richards again. We have on page two the statement that two thirds of patients found the doctor's explanation of the condition adequate. I would also note the very big figures at the bottom where the confidence and trust in the doctor at the last outpatient appointment has leapt from 68% to 84%; so we are moving in the right direction. You refer to a specific point that is made in here, which is that the NICE guidance said that we should give something in writing to the patient. It actually came out in March 2004, round about the same time as the research for this document was actually being done. So we expect that to be improving, because I absolutely take the point, that actually we want some kind of record although the record could be of different sorts. It could be a letter from the doctor, it could be a recording of the interview, it could be a whole range of different things. Perhaps Professor Richard could pick that up? Professor Richards: When I was in clinical practice myself, one of the things that I used to offer to do for patients with breast cancer who came to see me, often for quite difficult consultations about chemotherapy, was to audio tape that consultation so that they could take it home. We followed that up with a survey and found that patients liked that, they did listen to information afterwards and, exactly as you were saying, a comment that came back time and time again was "I hadn't heard you say it, but it was on the tape" which I think proves what you are saying. That is one way you can do it. You can also do it by writing a letter directly to the patient, possibly copying that letter to the GP. That has been done in Australia and there has been a randomised control trial showing it is beneficial, so that was also recommended in the NICE guidance as an option. What the NICE guidance did not do was say, it must be one or other of these, it just said that from now onwards we should be taking this step of giving patients a report of some description of that consultation. That should apply to any key consultation, anywhere in the care pathway. It may be when they get the diagnosis, or it might be later when they have a relapse of cancer, for example. Q29 Mr Jenkins: I want to slip into a different strain of questions now. You know that cancer patients particularly are entitled to certain benefits. I do not expect the consultant to sit down and discuss the benefit system with the patient, but whilst people have the fear of being treated and going through this issue, the uncertainty of benefits and finances can play very heavily on their mind. Do we have some situation in place where we are now starting to target, either the Department for Work and Pensions (DWP) or we are finding some way of linking these people up at an early stage to ensure that they actually draw the benefits they are entitled to? Sir Nigel Crisp: I think the answer is that it is not good enough. I think that was one of the things which came out of this report on page 35, where it actually draws out the fact that not enough people who were entitled to benefit actually knew about it or were helped to find it. We do not have strong enough systems in place to do it. Q30 Mr Jenkins: That is the problem. Now I want a solution. Sir Nigel Crisp: The links to that and another theme that you have seen in this report are cancer information centres and the growth of cancer information being provided actually within hospitals and within services which will enable us to do that. May I ask Professor Richards to pick it up? Professor Richards: I too recognise it is as a problem. I also welcome the spotlight that has been put on this by Macmillan Cancer Relief, because they have been particularly highlighting this. We are working with them and with the Department for Work and Pensions. What we need is a package of training for healthcare professionals, for nurses and doctors, not to make them experts but to give them adequate knowledge of the benefit system, that they can be the primary source of advice to patients, then the patients can be passed on to real experts in the benefits thereafter. I do think that healthcare professionals need to have that training, so that they can help the patients at the front line. Q31 Mr Jenkins: Do you feel that is the best route? I should have thought the aftercare professionals had enough to do, to be honest, and although they may have an understanding and they can advise people where to go, it should be the Department for Work and Pensions which should be picking it up. Are there any consultations and discussions with the department? Professor Richards: Sure, we are in consultation with the Department for Work and Pensions on this and we have a tri-partite group: the Department of Health, Work and Pensions and Macmillan Cancer Relief. I think the role of the healthcare professional here is one of sign-posting. I am not asking them to be experts, but they do need to know enough about who might be eligible for things to point the right people in the right direction. If we did that, then we would be able to make use of all the staff available to DWP. Q32 Mr Jenkins: I know you have this tri-partite group. Who is the lead in this tri-partite group? I still think it is the Department for Work and Pensions which should be leading this. It is their responsibility to get these benefits to these people who are entitled to them, is it not? Professor Richards: We are working very closely and as equal partners in this, because we are very concerned to make sure that cancer patients benefit from this, as they are; we are working as equal partners in this. Q33 Mr Jenkins: And this is the model you prefer. You are going to work as a tri-partite group with no-one taking the lead. Professor Richards: I think it requires all of us to make this happen. I do not think it is a question of one party being in the lead or not. I think we need to get our own house in order, which is about making sure that our staff knows enough about this. This is something that matters to patients and our staff should know about it so they can point patients in the right direction. That is all I am asking. Q34 Mr Jenkins: Is this rolled out to a point where you are going to make an announcement? Are you going to send this down to the --- Professor Richards: No, not as yet, but we are working with Macmillan. Q35 Mr Jenkins: When do you expect it to be finalised? Professor Richards: I do not have an exact timescale in mind. Q36 Mr Jenkins: I did not expect "a week Thursday at 2 o'clock". I expected 2005, 2006, whatever you think. Professor Richards: I think that during the course of 2005 we ought to be able to get our position clear on what needs to be done. Q37 Mr Jenkins: So before Christmas. About September, October, November 2005 we should start to see the paperwork roll out as to the way forward. Professor Richards: Yes, we ought to have agreed a way forward on it by the autumn of this year. Q38 Mr Jenkins: It is very much about information; I appreciate it is a very difficult area to get information to patients and elicit the answers you want from these patients. It is the same with regard to side effects; a quarter of patients do not fully understand the side effects of the treatment they are going to undergo. I do not believe anyone could understand what pain is like until they have actually suffered the pain. You cannot describe it; trying to describe pain is difficult. It is the side effects, the pain issue; we still seem to have a break in the link somewhere of getting this information back to the consultants, back to the aftercare professionals, to the patients. Do you feel there is more to be done in that area? Professor Richards: There is undoubtedly more to be done, but it is one of the areas where we have seen a marked improvement. Four years ago only 63% of patients were saying that they had a complete understanding of their side effects; that has now risen to 76%. There is still a long way to go, but it is a fairly marked increase over only a four-year period. Q39 Mr Jenkins: It is a quarter. Where is the breakdown, where does the link break down? I should have thought that, as a part of the explanation to start off with, they would be told what side effects to expect. Professor Richards: Absolutely, and this is one of the areas where very often it is the consultant who will give an overview of the side effects and then that will be supported and enhanced by the information that the clinical nurse specialist gives. That is an extremely valuable role and it is because we have more of those nurse specialists that we have seen this improvement that there has been over the last four years. Q40 Mr Jenkins: But there should in effect be a package for the patient and boxes which should be ticked to show that they have now received the benefits advice, they have now received the side effects and they have now received the pain identification and what to do about it and where to come back to. Professor Richards: Yes. Q41 Mr Jenkins: Obviously those tick boxes are not being ticked at the present time. Professor Richards: One of the things that we are doing more work on at the moment is how best to assess patients' needs across the whole range of things, from pain relief, through financial benefits to social support, whatever it may be, so that we can make sure that the patient's needs are, first of all, discovered and then we can act on it. If we do not ask patients about their financial status, we are not going to know who should then be referred on to DWP. Q42 Mr Williams: Why is it that the London experience seems to be so bad? Looked at as a Welsh MP, we think of London as having the great training hospitals, much easier to recruit consultants and medical staff. So what has gone wrong? Why is it that London at the end of all that seems to have a worse experience than their neighbouring regions? Sir Nigel Crisp: As I said at the beginning, I agree with you, the inputs are actually, if anything, better in London. The inputs, the amount of money, the resource going in is, if anything, the same level or maybe better in London and the outcomes, in other words people's survival rates are, if anything, better in London again. It is actually something about just how they are treated and some kind of people factor. We think the biggest issue on this is staff turnover and therefore not continuity of care, continuity of the conversation, continuity of the point about information which Mr Jenkins has been pulling out. We are actually trying to understand it in much more detail for the all communities in London, because, again, London is not remotely homogenous in terms of what people need. That is why, this having come out so clearly here and elsewhere, a lot of work is now going on in London to try to identify what it is that would make a difference. Q43 Mr Williams: In a way we are surprised that you were surprised. We would have expected you to have identified this a lot earlier, particularly practising clinicians. Professor Richards: I do not think there is any one single reason for it. I agree with Sir Nigel that it is likely to be staff turnover. I think it is worth remembering that a lot of young people come to train in London, they may spend a year or two working in London. Then they may choose to move elsewhere in the country, whereas in some other towns and cities, people are there for life, if you like, so it is a lot easier to provide continuity of care. What we have to do is to make sure we have the systems in place to overcome that, even though there may be a higher natural turnover in London. We know, for example, that more agency staff are used in London. There is more transfer of people from one hospital to another in London because they can move from hospital A to hospital B and they do from time to time. Each of the five strategic health authorities in London is taking this very seriously. I alerted them to these findings. They have written back to me. I have talked to several about it. North East London Strategic Health Authority is taking a lead on this on behalf of London. They have some extremely interesting work going on in Newham in terms of black and minority ethnic groups to see what their experience of care is. Equally, the King's Fund have taken a major interest in this. They produced a document called Capital Health a couple of years ago and they are interested in working with us. What we are doing in practice is that each one of the five strategic health authorities has asked its network to produce an action plan to show how they will be implementing the supportive and palliative care guidance from NICE. We will be then making sure that those action plans are implemented. We will also be reviewing all the services in London through our peer review assessment programme and that is being done during the course of this year. We will ask the teams which are going round doing that to pay particular attention to the patient experience and what is being done locally. Q44 Mr Williams: We have the inter-regional information here, the comparative response in relation to London. You have referred to an intra-regional league, the regions within the region. Do we have the same degree of variation within the regions within the London region? Professor Richards: It is important to remember that for this survey only a sample of trusts were chosen. I think half a dozen trusts in London took part in this survey and about 43 or 44 from outside London, so we do not have the full picture for London. In the previous survey, back in 2000, every trust in the country took part in that, but on this occasion, it was just a sample. I think what we can say is that collectively the experience of care for Londoners was less good than elsewhere, but what we cannot say is, within London, whether one place was particularly better than another. Q45 Mr Williams: And yet there will be some centres of excellence in amongst them. Professor Richards: Yes, but even with that each one needs to look at its own results and make sure they are as good as we would hope them to be. Q46 Mr Williams: If someone came to you and said they had a choice of treatment in London or treatment in, say, the Manchester area, would what you have just said lead you to say "Steer clear of London"? Professor Richards: No, because as Sir Nigel Crisp said just a minute ago, the results in terms of survival rates are every bit as good in London as they are elsewhere. I think we need to look at the whole picture. The patient's experience is one part of it. We need to look at the survival, we need to look at the use of anti-cancer drugs, the waits for radiotherapy, everything and put it together. When I have done that, there is no one part of the country that I would say is perfect on everything and no one part that is worst on everything. They all have things that they need to improve on. Sir Nigel Crisp: May I just make one point on that which is that these were six hospitals in London - I think it was six - and they ranged from those that you would know terribly well to less well known ones. Q47 Mr Williams: You were not necessarily comparing like with like in each of the sub-regions. Sir Nigel Crisp: That is probably true, but I actually think the challenge to those hospitals is: why do patients prefer the experience in Manchester? I think they need to look very clearly at what it is that they are doing in Manchester that may be a better experience, even if the outcome in London may be better and the inputs in London. Q48 Mr Williams: Is that being studied? Sir Nigel Crisp: The cancer networks do sit down and learn together and patient experience has now recently become much higher as one of the things which are being looked at through the cancer collaborative. Q49 Mr Williams: That sounds fine. I have no doubt it is what happens when specialists meet together in conferences and that sort of thing, but how systematic is this process of learning the good practice from other areas? Professor Richards: It is systematic. I get all 34 of the cancer networks in England together three times a year, that is the medical director of the network, the network manager, the lead nurse and a whole range of other people involved in those cancer networks, about 300 or more people. We get together three times a year at a conference in order that we can make sure that we are sharing experience across all the networks, that I can communicate things out from the Department of Health and, most importantly, so that I can hear from them what their problems are. Q50 Mr Williams: That is fine. That is exchange of personal opinion, but it is therefore highly occasional. Are you systematising this, are you now following up this realisation with statistical analysis for our next report? Professor Richards: Yes. Q51 Mr Williams: I am not trying to catch you out. Professor Richards: We are. We measure a whole lot of different things on cancer. We have already talked today about waiting times for cancer and those are collected in every hospital across the country in order that we can see the different positions. We also have this peer review programme where we visit every hospital, but where the hospitals are assessed against a very detailed manual of service measures. It is a thick document and that will give us a very clear readout on whether hospitals have the necessary services in place, for example whether they have the clinical nurse specialists that I have been talking about. So that is being done and we are in the middle of a round of the peer review visits at present. Q52 Mr Williams: Coming back to a point which has been raised by my colleague, the written reports. A lot of people obviously are in a virtual state of shock when they are receiving their diagnosis and when they are talking things through. They may not comprehend and indeed, in so far as there may be technical language, it is may be that they do not understand what is being said. How automatic is the written report becoming and is this not particularly important, thinking of a section of the report which refers to a fortunately relatively low percentage of cases, but still too many cases, where the consultation about diagnosis lasts only ten minutes. If it is a very short time and the person is being given bad news and is in shock, it is doubly important, is it not, that they have something they can take away to discuss with their families? Professor Richards: I agree that it is good practice and I was delighted that the NICE guidance specifically recommended it. Remember that that guidance only came out in March of last year and so did not affect the patients in this survey who were being surveyed at exactly that time. We will have to reinforce these messages, that this is good practice, we will have to encourage teams across the country to adopt this practice, but that I am absolutely committed to do, because having delivered that sort of practice myself, I know it is both feasible and I know it is highly acceptable to patients. I personally will encourage it as much as I can. Q53 Mr Williams: How difficult does it become for you, and I recognise that this is patchy around the country, with linguistic difficulties now becoming a factor? Is this complicating the application of this process? Professor Richards: That is an additional complicating factor. I think we still really have quite a long way to go with people who do read and write and understand the English language. In terms of foreign languages, one of the programmes which has in fact been funded through the lottery is a telephone helpline to Cancer Backup, the information charity, where there are interpreters available for the 12 commonest foreign languages. That does at least mean that there is a direct access, they can phone the nurse who is on the helpline and it is a three-way conversation then, with immediate access to an interpreter. Equally, at a local level, hospitals have their own arrangements for interpreters and clearly they know what foreign languages are most likely to be spoken on their patch. Q54 Mr Williams: But it makes it more important that they have this piece of paper if they are going to have to get advice over a phone, does it not? There is something to work on. Professor Richards: Absolutely, but this is a new and very welcome recommendation that we will now implement into practice. Q55 Mr Williams: May I ask one final question, Chairman? I was surprised to see that as high a proportion as a quarter of patients have not been warned of side effects. It is a bit like fear of flying: things that are unpleasant can often be tolerated better when you understand why they are happening. Why is it that as many as 25% are not warned of what side effects to expect? This is in figure 17. Professor Richards: I think the exact wording was something to the effect that the percentage of those having a complete understanding of the side effects was 76%. There is a further proportion that had some level of understanding; in fact I think it is figure 17 on page 18. There is a group there, just over a further 10%, saying "Yes, and I understood some of what was said". However, there are those, just one up from the bottom, who say "No, side effects were not discussed at all". Now that, to my mind, is unacceptable but I think you will agree that the proportion for whom that was true has decreased very considerably between 2000 and 2004, by more than half, just looking at that graph. Q56 Mr Jenkins: We see on page 28 that the Princess Royal Hospital at Hull has an integrated support system which seems to be first class and admirable. Why is it so there and what plans do you have for rolling this system out? Professor Richards: A number of hospitals do now have different forms of information and support centres and this is just one very good example in Hull. It is an excellent example, but there is an excellent one at Mount Vernon Cancer Centre, one at my own hospital at St Thomas's, a variety of ones around the country supported by Macmillan Cancer Relief. We do have a number of models of information and support centres which give people direct access to any information they want about cancer, but also where they can come and often where there are complementary therapies offered, councillors available. Those services which did not exist five to ten years ago, or were very rare, are now becoming much more commonplace and the one in Hull is one of them. Q57 Mr Jenkins: So when do we expect to see this sort of service at every centre for the treatment of cancer? Professor Richards: Again, the NICE guidance sets out what services should be available to patients in this way and we will be monitoring the implementation of that guidance through the peer review appraisal programme that I described a minute ago. Q58 Mr Jenkins: What are you going to do, Sir Nigel, to raise awareness amongst men of colon and bowel cancer? Sir Nigel Crisp: I am going to refer again for some of the detail to Professor Richards, but a large number of campaigns is starting to take place. We put quite a lot of money into it. The other day I noticed one that we are doing specifically aimed at groups from Asian backgrounds. We are actually getting much more segmented in terms of our specific targeting of particular people whom we think we need to get information to. That is the broad approach that we have been taking, but I do not know specifically on bowel cancer. Professor Richards: This is a very important topic for us at the moment, particularly as we are going to be rolling out the bowel cancer screening programme from next April. It is extremely important that men and women in the population are aware of what bowel cancer is and also the value of screening which undoubtedly saves lives. Several trials have shown this now. I think we all agree on that. We have to get those messages through in every possible way we can. We are working with the relevant charities; for example, for bowel cancer with Beating Bowel Cancer as a charity to raise the profile and I attended a meeting with them just a week ago to do this very thing. We are also planning to work with individual primary care trusts and a programme called the Healthy Communities Collaborative. They have been extremely successful in working with communities, particularly with elderly people in the communities, to reduce the rate of people who have serious falls in the community. If they can do that for people falling over, we believe they can also do it to raise the profile of cancer and we are working with them to roll out some pilots as soon as possible. Q59 Chairman: Just one last question, by way of summary of this afternoon's hearing. Obviously a lot of the work we do in this Committee is terribly important in terms of saving money, but this impacts directly on people and therefore is a very important hearing. When you appear in front of us in four years' time, what improvements to these figures do you think we will see? Professor Richards: I think we will see the continuation of the upward trend that we have seen over the last four years. Q60 Chairman: That is pretty vague. Professor Richards: I had not finished. We have seen improvements in a whole lot of areas in this report and I think we will see the same amount of improvement again. Specifically, I think we will see improvements in prostate cancer, because we now have the guidance in place. That, combined with the support and palliative care guidance, will see a major improvement and I would be confident that in four years' time, we will be able to demonstrate that to you. Q61 Chairman: But it would not be up to the level, say, of breast cancer. You could not offer that, could you? Professor Richards: I hope breast cancer itself will go on improving. I hope that we will have narrowed the gap and I hope that prostate cancer will be where breast cancer is and chasing hard. Q62 Chairman: We will hold you to that. Thank very much. Professor Richards: That is fine. I am happy. Chairman: Thank you Professor, thank you Sir Nigel. I am very sorry for the late start. Thank you. |