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UNCORRECTED TRANSCRIPT OF ORAL EVIDENCE
To be published as HC 831 -i
House of COMMONS
TAKEN BEFORE the
pre-appointment hearing for chair of THE NATIONAL INSTITUTE FOR HEALTH AND CARE EXCELLENCE
TUESDAY 11 december 2012
professor david haslam cbe
Evidence heard in Public Questions 1 - 53
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Taken before the Health Committee
on Tuesday 11 December 2012
Mr Stephen Dorrell (Chair)
Grahame M. Morris
Mr Virendra Sharma
Dr Sarah Wollaston
Examination of Witness
Witness: Professor David Haslam CBE, preferred candidate as Chair of NICE, gave evidence.
Q1 Chair: Professor Haslam, thank you for coming. Welcome to the Committee. Congratulations on securing the nomination of the Secretary of State for this role as Chairman of NICE. We would like to open the session, if we may, by asking you what answer you gave to what we understand was the question you were asked at the beginning of your interview for this role, about what you thought the three priorities for NICE were going to be in the years ahead.
Professor Haslam: Thank you very much. It is an absolute honour and delight to be here-a real privilege. The answer that I gave was that I thought there were at least three really important issues.
The first one was, as from next year, NICE moving into a major role in social care. Having worked with the Care Quality Commission, I have noticed very clearly the real differences between health and social care, and the importance of ensuring that people work together and that NICE moves into a position where it is really trusted by the social care community. NICE has a worldwide reputation in terms of health; it does not yet have a significant reputation in social care. That is an important line that we have to go down, particularly because of the importance of the increasing integration between health and social care.
The second one is the whole issue of comorbidity-the fact that, fundamentally, the health service has been organised over the last many years around single conditions, and almost an assumption that people are well and get ill with a single condition, go to hospital, get better and go home. It is not like that any more. Now, people are living with longterm conditions, particularly with multiple longterm conditions. The relevance of that for NICE is that most of its guideline products have been based around single conditions. Most of the guidelines are based on research that excludes patients with comorbidities. If you are a general practitioner-we know that GPs deal with 90% of the work in the health service-and most of your patients are elderly with multiple conditions, you do not have guidelines that are appropriate to most of your patients, which is a real, difficult tension. It means you have fantastic research and guidelines, but you have to put a huge amount of judgment on to that. It is important that NICE focuses more on how perhaps we link together the major multiple conditions and also look at what we really want for patients-what the patient view of quality is.
Finally, of course, there are the inevitable cost pressures that there are on the NHS and the fact that NICE is very much going to be at the forefront of dealing with those. That is obviously going to leave the Chairman of NICE in quite an exposed position, so I felt it was something worth raising right from the start.
Q2 Chair: Those are three interesting themes. As to the point you started off with about the importance of developing NICE’s position in social care, would it be fair to characterise your position as wanting to break down the difference that has traditionally been observed between healthcare and social care, and do you broadly share the view that Mike Farrar has expressed that what we need is a care system with a medical adjunct, rather than a medical system with occasional-my words, not his-spasmodic social care support?
Professor Haslam: If you were designing a system from scratch, you would not split it into health and social care. The public doesn’t recognise that. The public doesn’t understand our tribalism; it just wants decent care. It is very clear that an awful lot of the problems that are affecting, say, acute trusts relate to the difficulty in discharging patients to social care. So you absolutely have to have these methodologies joined up. Indeed, if I remember rightly, at the King’s Fund a couple of weeks ago you gave a presentation on this exact issue. We have to find a way through it.
What I recognised very much at the Care Quality Commission, when CSCI-the Commission for Social Care Inspection-and the Healthcare Commission were brought together, was that there were so many fundamental differences in the way these two groups even talked or used language. The most classic one is the use of the word "outcome", which to someone from a social care background has a fundamentally different meaning to someone from a healthcare background. If those two people are having a discussion together, they each think the other one understands what they are saying. So recognising those sorts of issues becomes extraordinarily important. As I say, the public won’t forgive us if we don’t get this right.
Q3 Chair: What you are posing is a huge challenge to NICE, isn’t it?
Professor Haslam: Absolutely.
Q4 Chair: You started off that answer by saying "if we were designing the system again". To some extent, NICE guidance is encouraging people to think about how to do precisely that, isn’t it? Do you have a clear idea in your own mind about how NICE can address those different audiences and bring them into one system?
Professor Haslam: First off, it takes time. It is not something that you can legislate for. You have to build up trust and understanding and bring people together. I see my role as chair very much, hopefully, as working closely with senior people from the social care world to understand, indeed, their fears about NICE. I suspect that, because of NICE’s reputation as a health organisation, they feel that social care is somehow going to get lost in that-that it is a bit of an adjunct. I do not see it that way. I see the whole thing as very joined up.
Q5 Dr Wollaston: In your role as the National Clinical Adviser to the CQC, how did you manage to make a difference to improving care standards, there having been a number of scandals about quality of care across the health and social care sector?
Professor Haslam: My main role at the CQC has been focused on the upcoming registration of general practice, which kicks in in April next year, ensuring that the methodologies that we use there are as fit for purpose as possible, and mainly doing that through working with stakeholders, absolutely recognising, as I know you do, the real tensions that general practice is under at the moment-the absolute overload that is going on there. The importance of the regulator not adding to the problems, as much as possible, is critical.
With regard to other sectors and so on, my colleagues and I work with, for instance, the outliers team, which looks at the analysis of data to see where there is outlying performance to try and analyse why that is. An awful lot of this work fundamentally flags up questions rather than answers, and you would then need to go and have a look at the relevant organisation. But, as I say, my main focus has been on the primary care registration.
Q6 Dr Wollaston: Can I pick up on point two about comorbidity? If you were taking up your new role, how would you encourage research or push companies into undertaking research into patient groups who are genuinely representative? You talked about comorbidities, but we know, increasingly, that there is a trend for drug companies to want to undertake research in populations in other parts of the world that are not representative, let alone excluding patients specifically with comorbidities. How can you, in your new role, drive them to undertake representative research?
Professor Haslam: That is a tremendous question, for which I am not sure I necessarily have an answer yet. But you are absolutely right. All the focus has been on single conditions and, indeed, this whole issue of focusing on easiertoreach groups of patients who may not necessarily be representative of-
Q7 Dr Wollaston: They are cheaper for undertaking research, but not representative of our populations in the UK.
Professor Haslam: No. Therefore, it behoves NICE to be quite sure that the research that it is taking on board, in looking at developing guidelines, is relevant to the population it is making those recommendations for.
Q8 Dr Wollaston: Would you take a more muscular approach, as, say, IQWiG have done in Germany, in refusing to give approval if you are not seeing, for example, all the relevant data, or you are not confident that the research is being undertaken in a representative population?
Professor Haslam: This whole complex issue of unavailable data-which was obviously flagged up by Ben Goldacre’s book very much and then subsequently by Fiona at the BMJ and so on-is an extraordinarily important area. I find it impossible to come up with a good argument as to why all data should not be released. But at the same time I very much recognise that the pharmaceutical industry has done a huge amount of good. You only have to look at a condition like AIDS to see the remarkable changes there have been for HIVpositive patients in the last few years. Therefore, we mustn’t demonise the pharmaceutical industry. But, following this particular discussion about open data, they are in a difficult position, where they have to rebuild trust with professionals and the public. One of the ways of doing that would be to be much more open with their data. As I say, it is impossible to come up with good arguments for why all information should not be available.
As Mike Rawlins said here last week, there is also the difficulty that you don’t know what you don’t know, particularly if it is in another jurisdiction. The concept of ensuring that the medical director of the pharmaceutical company signs a declaration that, to his or her best knowledge, we have all the information that is available gets us a long way down this track. It is certainly something I am very focused on.
Q9 Chair: When we asked Mike Rawlins last week the same question that I asked you about what the three challenges are for NICE, his third one was that it needed to develop stronger relationships with commissioners. Do you have any thoughts about that?
Professor Haslam: Yes. The whole way the new system is going to work is obviously very much up in the air at the moment. The relationship between NICE and the NHS Commissioning Board is going to be extraordinarily important. The twoway process between the requests, say, for quality standards to be set and NICE’s products is going to be vital, so I will want to build really strong relationships there. It is not one of NICE’s biggest problems but one of the system’s biggest problems at the moment relates to implementation. It is absolutely pointless producing worldclass, internationally recognised guidelines-guidance, evidence or technology appraisals-that sit on shelves.
Q10 Chair: As observed in Omaha.
Professor Haslam: Yes. The critical thing is going to be working with the rest of the system to look at how recommendations can be best implemented. NICE has had an implementation unit, but it is not, strictly speaking, NICE’s responsibility. Similarly, I do not want NICE to waste its time producing information, guidance and guidelines, highquality work. That is going to require working with the Commissioning Board. It is also going to require-
Q11 Chair: Do you have a clear idea of what the Commissioning Board should do about that?
Professor Haslam: There clearly needs to be a joinup-and I don’t think there is yet-between quality standards, the Commissioning Outcomes Framework and the Quality and Outcomes Framework for general practice. All these need to be joined up. Indeed, one would hope that part of the commissioning route requirement for provider organisations would be to publish how they are achieving against NICE’s recommendations. You must remember that we cannot insist, or inspect, on 100% implementation of everything we produce, but it would be important for the public to know when this is and is not being done.
Q12 Chair: There is one other thing. In your earlier answer you referred to 90% of patient interfaces being with the GPs. First, I guess there are pharmacists who would not necessarily agree with that statistic. Secondly, if we are reexamining or reimagining the relationship between health and social care, that percentage is also challenged by that view as well.
Professor Haslam: That is an entirely valid point and completely accepted, yes. I think what I am talking about is 90% of the interactions with the medical profession, but you are right that there is a huge amount that both can and maybe should be done in other sectors, including pharmacy. Indeed, the whole area of selfcare is one that the health service has to explore much more.
Q13 Chair: The reason for linking that with my question about commissioning is to ask you whether you would agree with the proposition that one of the biggest challenges facing commissioners is how to reimagine primary care in this new integrated healthcare system.
Professor Haslam: Absolutely. We cannot just shift work out of secondary care into primary care, which is already struggling with the workload it has, and expect primary care to be able to absorb this. They are astonishing in what they do absorb, but it is unsustainable to go on like that. I have always had a slight concern that in any publiclyfunded system you can choose two of quality, affordability and access, but you cannot get all three without reengineering the system. In other words, you can have quality and affordability but you have waiting lists, or you have short waiting times and affordability but the quality plummets because you have to do it too quickly. You have somehow to look at different ways of working the system, and that means looking across the whole system.
Q14 Chair: As you started off saying, the system is trying to do something fundamentally different from what it was designed to do 50 years ago. So it is not surprising if the instrument we need to achieve that result looks rather different from the one we have now.
Professor Haslam: It must do, or we won’t succeed.
Q15 Chair: Because of your background as a GP, would it be fair to say that in your time as chairman of NICE-assuming that goes ahead-the GP fraternity would be expecting to hear from you about the changing face of general practice in the healthcare system?
Professor Haslam: I am not sure my role in NICE, if it goes ahead, is necessarily to lead general practice in any shape or form. It has very able leaders there anyway, but of course-
Q16 Chair: But it is your role to define good practice.
Professor Haslam: It is my role to define good practice. What has concerned me about NICE is that, as I said, the vast majority of the work done by doctors is in primary care, and yet I suspect GPs are the least users of NICE’s products, for the reasons I have said around comorbidity and complexity. If we don’t address that, then we are irrelevant to that sector. We really do have to address that. I want GPs to see what NICE does as hugely relevant to them in their work and the work of the practice nurses and teams and so on.
Q17 Grahame M. Morris: Do you mind if I come in on that, please, Chairman? You referred to the evidence that Mike Rawlins gave, Professor Haslam. I am sure you will have seen the evidence that was given to the Committee by the Royal College of Physicians by-I am trying to think who it was now-
Professor Haslam: Was it Dr Patterson?
Q18 Grahame M. Morris: It was indeed, yes. She raised this very point that you have referred to there and said in her evidence, "The other thing we would encourage NICE to do as it goes forward is to continue to be more flexible with the methodology. The gold standard is the randomised control trial and the research evidence that is within that." But she said, "For many conditions,"-and I presume comorbidity is a part of that-"we don’t have randomised control trials so you have to have ‘best fit’ of what evidence there is available. Sometimes it is at the level of a professional consensus, and that is what doctors do all the time." What is your view, particularly in relation to one of the "Cinderellas", in relation to mental health, about assessing the effectiveness of psychological therapies in developing good clinical practice?
Professor Haslam: Mental health, again, is a huge part of the amount of work that is done in primary care. It is round about a third of the workload.
Grahame M. Morris: It is.
Professor Haslam: It is absolutely critical that patients, say, with longterm physical conditions have their mental health needs recognised. That absolutely has to be joined up. There is so much evidence around conditions like arthritis that mental health becomes a very significant player there. That is very much part of the reason that I feel this singlecondition focus is no longer helpful. The other difficulty, of course, with mental health is that so often the requirement-and this is not a reason to shy away from it-is for more mental health workers, and they are not there. This again has to be a joinedup system, working with the Commissioning Board to ensure that we deliver quality.
Q19 Grahame M. Morris: Following on, if I could press you on that and the evidence that Linda Patterson gave to the Committee, if you were successful, Professor Haslam, and you are appointed, would you be prepared to review the way in which NICE assesses the effectiveness of psychological therapies in developing guidelines for mental health therapy?
Professor Haslam: I would be absolutely happy and expect to be looking at that.
Q20 Grahame M. Morris: So the answer is yes.
Professor Haslam: The answer is yes. What the answer will be to that "look", I cannot tell you because it absolutely requires a-
Q21 Grahame M. Morris: Of course. You are just committed to a review.
Professor Haslam: But it seems to me essential. It is such an important part of healthcare that we cannot ignore that.
Q22 Mr Sharma: Please can you tell the Chair and the Committee how your past career has prepared you for this demanding role?
Professor Haslam: As you know, I spent many years as a general practitioner, and GPs work across-probably more than almost anyone else in healthcare-the health and social care boundary and don’t recognise them as separate areas.
I then worked as both chairman and president of the Royal College of GPs, which gave me a very significant insight into health policy, health politics and so on. I was a member of the NHS Modernisation Board, for instance, back in 2001.
After I finished with the Royal College of GPs, I was recruited by Sir Ian Kennedy to the Healthcare Commission and so became very much involved in the whole measurement and assessment of quality. The area I became most interested in there is almost the opposite of quality: what is it that makes people deliver poor quality? I am absolutely convinced that the vast majority of people working in health and social care want to do a good job, so what is it that gets in the way? What are the problems?
One of the problems I constantly come back to is the unintended consequences of good ideas, the classic example being the unintended consequences that seemed to arise from the fourhour A and E wait. No one in their right mind would want any of their friends or family to wait more than four hours in A and E, but the moment we brought in a target around that it changed behaviours in a way that produced poorer quality care and resulted in ambulances backing up outside A and E units so that the clock would not start. No one would want their own mum to be on that ambulance, so why do they do that for others? I developed more and more of an interest in trying to understand these unintended consequences of good intentions and have always got involved in those sorts of discussions.
Then I became a member of the National Quality Board about four years ago-I was personally appointed to the National Quality Board-and again the discussions on that board were focusing on quality, the upcoming problems, the Francis report and so on.
It has been a pretty broad career, which has very much focused in the last 10 years on issues around quality and working at a national level, which is why I took notice when I was aware that the post at NICE was being advertised.
The other thing that struck me about it was that it is so broad-from the life sciences industries at one end to international healthcare and social care at the other-that, whichever way you want to play the spectrum, it is calling out for a generalist.
Q23 Valerie Vaz: I want to turn to the clinical guidance and the quality standards. Given your first answer was that one of your main priorities was integration, are you going to have to revisit those? My major concern is that it took six years for the obesity guidelines to come through, and you have talked about multiple conditions. Is that something you are going to have to look at?
Professor Haslam: At the moment, the standards are fairly focused on single conditions but they are focused on small subsets of those. They don’t become, I think, a problem in that the specific metrics that are used-I do not think, but I would need to look at this-would not have the sort of unintended consequences of deteriorating other aspects of a patient’s care. The critical thing is that what we do and what we call quality must be what patients and the public recognise as quality as well. It is quite one thing for a diabetic to have a perfect HbA1c result, but, if they feel lousy, is that good care and vice versa? So that debate involving patients and the public is a critical one as well. From what I have looked at so far with the quality standards, I don’t think there is a problem and the last thing I want us to do is go back and revisit all that. It is enough of a challenge anyway, and, as you know, NICE is hoping to produce, I think, 30 by the end of this year and then 35 or more next year, depending on funding. The last thing we need to do is go back to scratch.
Q24 Valerie Vaz: So it is possible to update those guidelines-
Professor Haslam: Absolutely.
Valerie Vaz: -with the resources you have.
Professor Haslam: I am not in a position yet to comment on the resource issue, but it is vital that we just examine these and make sure that they are delivering what we, the system and patients want.
Q25 Valerie Vaz: Can I quickly move to part of your CV? You were Chair of the NICE Evidence Accreditation Advisory Board.
Professor Haslam: Yes.
Valerie Vaz: Could you explain what that does? The mantra is that it is evidencebased policy rather than policybased evidence. I want to know what your role was in that, if you could just explain it to a lay person.
Professor Haslam: Yes, indeed. NHS Evidence is part of the NICE website and presents a search engine very much like Google. But, unlike Google, it sorts, sifts and prioritises in terms of getting the most relevant information to the top of the tree for a clinical or social care audience that would be using it. NICE has delivered a huge number of guidelines and guidance on different products but it hasn’t covered everything. There are a lot of organisations out there producing guidelines on obesity, diabetes, or whatever. Some of them might be delivered or designed by three wellmeaning people meeting in an evening and drawing up some guidelines-I am not knocking that at all-and others are drawn up much more professionally by organisations that have taken on board issues like patient and public involvement in conflict of interest issues and so on.
My committee assesses the guidance or guidelines that have been produced by external organisations to NICE-indeed, we have assessed NICE’s own products and SIGN’s products from Scotland, and so on-to see whether they meet the criteria that we have set, which are based on internationally agreed criteria, to look at things like patient and public involvement, conflict of interest and the whole issue of whether the database that has been used is as complete as possible and so on. We then accredit guidance that we believe is good enough. In the Health and Social Care Bill, and then the Act, it states that quality standards will be based on NICE guidance where available and, if not available, NHS Evidenceaccredited guidance. In other words, it is not just two men and a dog that have drawn something up. It is something that is fully accredited. The thing I am most proud about with that piece of work is that the standard of submissions that we are getting is going up and up because people are recognising the importance of being accredited. It has driven up the quality of guidance that is available.
Q26 Dr Wollaston: Can I return to the point about unintended consequences, particularly in respect of the HbA1c target and the problems there were with that? Would you feel similarly, if there was a rigid target for blood pressure, which likewise could have unintended consequences, that that is something that NICE recommends is in the QOF?
Professor Haslam: We are into an interesting area here, are we not? Absolutely, guidance must be guidance; clinicians and patients working together must be in a position to make the best judgment for that individual; and different patients, as you well know, have different expectations. So I think an absolutely mandated, "Every citizen of the United Kingdom must have a blood pressure below 140 over 90" is not the way that I would wish my profession to carry out medicine.
Q27 David Tredinnick: Professor, a key part of NICE’s role has been to assess the costeffectiveness of drugs and other therapies. What emphasis do you expect to put on other therapies?
Professor Haslam: We have an obligation and should look at therapies where there is evidence. If there is good evidence that a therapy works, then it is something that certainly NICE can make recommendations on. Of course, NICE has interests in the whole public health arena as well as technology appraisals and drugs and so on.
Q28 David Tredinnick: Going back to the point that Grahame Morris made earlier on about randomised control trials and psychological therapies-I think that came up in the question-do you think that there is a role for observation rather than rigid randomised control trials? That was the traditional way of assessing medicines before randomised control trials came in.
Professor Haslam: It is a really difficult question. I am very aware that, in my career, I have in my files letters of gratitude from patients for treatments that I have given them and who have recovered from the condition, but now we know that it was just sheer coincidence that they got better. In fact, when I first qualified as a doctor, which was a long time ago, patients with heart attacks were kept in bed for three weeks. In my first hospital job, if someone had a heart attack, they were not allowed out of bed for at least a week and had to use a bedpan. It is a miracle that people survived that, but I have a lovely letter from a family of someone who was really grateful for the care. The relevance of that is that the simple fact of recovery does not mean that therapy was effective. There is a real difficulty in simply using personal anecdote and observation. You can certainly use that to stimulate another way of looking at outcomes, and I am absolutely committed, as I have said, to understanding what patients see quality is, but it moves us into a tricky area.
Q29 David Tredinnick: How will you reconcile that experience-it is a very interesting anecdote-with the fact that the new Health and Social Care Act, and indeed Government guidelines, require greater consideration of what patients want?
Professor Haslam: Absolutely.
David Tredinnick: We now have Healthwatch and Health and Wellbeing Boards. If patients want a wider range of services-I should add that integration means different things to different people and to some of us integration is about bringing in a wider range of treatments, for example, better use of herbal medicine and homeopathy on the Health Service-how are you going to address this new paradigm?
Professor Haslam: There is no doubt with things like personal budgets that the power is very much there given to the patient to make a decision. The NHS and NICE, as a critical part of this, have a responsibility to ensure that every pound that is spent is spent on something where there is evidence that it helps. You can only spend it once. I know the point you are making, which is how do you assess whether it was helpful or not, but I would be reluctant for NICE to give its approval to therapies where it does not have evidence that that works.
Q30 David Tredinnick: Would you give any credence to the fact that Chinese herbal medicine and acupuncture have been used in China for perhaps 3,000 years and are used in, I think, 66,000 hospitals in China? Do you think that that would be the kind of evidence that you would consider to be worthy of taking note of?
Professor Haslam: It is worthy of taking note of and exploring to see what the real outcomes are, yes. The fact that something has been used for a long time, as we all know, does not necessarily mean it is effective. Longevity is not necessarily the same as effectiveness. I certainly do not have a closed mind to saying that we can assess things, but I would require the evidence to be there. We have a responsibility to the Exchequer to ensure that our recommendations are costeffective.
Q31 David Tredinnick: On that, finally, do you think there has been an overemphasis on costeffectiveness and too little account taken of other issues generally?
Professor Haslam: I think "effectiveness" is the critical word there. As I have said, you can only spend any given pound once, and I think we have an obligation to ensure that you get the maximum bangs for your bucks for the health service from the funding that is available, and, particularly following the Nicholson challenge and the deteriorating inevitable fiscal climate for the health service, we have to be extremely rigid about this.
Q32 Chair: There is an emerging problem here, isn’t there, for the health and care system? The more we use the rhetoric of "integration", that care is care whether it is in social care or healthcare, the more we come up against the different cultures, as you were saying earlier. One of the aspects of the different cultures is that social care is more comfortable with giving people budgets and inviting them to make their own decisions than healthcare is. I wonder whether you have thought about how that element of the culture clash can be resolved.
Professor Haslam: I don’t have the solution. I have thought about it a great deal. The danger is that the moment you start saying what is best for the patient and "Doctor knows best", it becomes a deeply patronising approach. Yet there are occasions-extremely complex scenarios-where the evidence is very clear as to where the benefit lies. But, as I was saying to Dr Wollaston, the decision of what quality looks like has to be driven by the individual patients. Therefore, patients must be in a position to be able to say to their clinician, "That is very kind of you, but".
Q33 Chair: To choose, in plain English, a suboptimal solution from a clinical point of view.
Professor Haslam: Absolutely. The "choice" word has been rather hijacked in the health service. There has just been choice of secondary care provider, and actually choice kicks in from the moment you consult any healthcare professional about where you want to go next. Patients must have the autonomy to choose not to follow the advice that their clinician would want them to follow. They must have that. Any other approach does not feel ethically or philosophically right, but it is also absolutely clear that doctors must make sure that they understand the ramifications of that.
Chair: That leads you straight back into-
Professor Haslam: Absolutely.
Q34 Dr Wollaston: Can we come on to the question of valuebased pricing? Could you explain to the Committee, Professor Haslam, what you understand by valuebased pricing and how you think that will change the role of NICE?
Professor Haslam: Defining valuebased pricing is the ultimate exam question; you are absolutely right.
Q35 Chair: Professor Rawlins was the first person in history to pass that exam last week.
Professor Haslam: In which case, I refer the Committee to him.
To me, the situation we are in at the moment is slightly nonsensical in that a drug is produced, it is given a price, NICE looks at it and says yes or no based on that price. It is very clear that that entirely binary response feels illogical to me. There is a requirement to look at what the value is, driven by the particular product, even as simply as saying-I don’t know if NICE could do this as I don’t know enough about the processes as yet-"At the current price, that does not reach the QALY threshold, but at such and such a price it might." Then it is up to the Department of Health to negotiate with the industry to see if that can be reached. That is not NICE’s responsibility, but I absolutely see a central role in determining the point at which a therapy would be costeffective.
The other difficulty, of course, with valuebased pricing is determining the word "value", who are we looking at and what are we looking at? If you are just looking at clinical outcomes, it is one thing. If you are looking at the effect on carers and employment and so on, it becomes an extraordinarily difficult beast. We have to reach a fairly tight definition of what "value" is, accept that it is not ideal and then work with that. But the current system feels, to me, untenable.
Q36 Dr Wollaston: What about the position of orphan drugs within that?
Professor Haslam: NICE is, as I understand it, next year taking over from AGNSS the very highcostlowvolume drug responsibility. There are certain conditions where it is absolutely vital that patients have access to those drugs and there has to be a way of funding that. You run into deeply ethical problems if someone develops an extremely expensive condition and society says, "Tough." We have to find a way around that.
Q37 Mr Sharma: In your response to David’s comment, I was very pleased to hear that you still have an open mind. Millions of patients in the many countries with alternative medicine and treatments are cured, and there are very longestablished institutions that are advocating them. Don’t you think that is good enough, as baseline evidence, to start a dialogue to introduce alternative medicine in this country?
Professor Haslam: We have to be sure that the findings are applicable to this population. We have to be sure that the research that is done, and the evidence that is collected, is appropriate and robust enough. As far as I am concerned, with any therapy-and people split into complementary therapy and so on-if there is evidence behind it, it is just part of medicine. If there isn’t evidence, we shouldn’t be dealing with it. That is a very clear distinction. In terms of how you find that evidence and where you look, we know that there are drugs that have been developed from plants and so on that we now use, absolutely, in conventional medicine. We should not have a closed mind to the possibility, but we should absolutely apply stringent scientific rigour to making sure that what we are recommending works for this population.
Q38 Valerie Vaz: I want to move on to the Cancer Drugs Fund, your view on the effectiveness of it and what you would have said to the Government if they had said, "We are going to set up a fund for a specific disease." I do not know if you heard Sir Michael Rawlins’ evidence last week, but could you give us your view on it?
Professor Haslam: Yes. I saw his evidence and read the correspondence and the leading articles in The Times and so on following that. My view has been very consistent on this. As a general practitioner, over the years I have dealt with a large number of patients with cancer or people’s relatives with cancer. Cancer is a terrifying word, but I think we do make a slight mistake in linking all cancers together. There is not just cancer; there is a multiplicity of different conditions, some much more serious than others. In addition, there are other conditions that are more dangerous than cancer. For instance, the prognosis with certain forms of heart failure is worse than many forms of cancer. So there is an illogicality in saying that, "All cancer deserves X", and other conditions lose.
This comes back to my unintended consequences question: what has been the impact? What we do know is that the Cancer Drugs Fund has led to more patients receiving more drugs. We don’t know what the outcomes have been and we don’t know what the impact of that has been on other sections in the health service. Again, it comes back to my need for evidence about that. If that is going to be reviewed, I would want to look at it across the board. At the end of the day, as Sir Michael said-or as Sir Andrew Dillon said, I think-it is very much a political decision as to whether you focus there. But, as I say, there are other conditions that are as serious as cancer and we should not discriminate against those because they do not have as frightening a name.
Q39 Valerie Vaz: Would you see that you have a role to play in challenging someone who says, "We need a fund for certain conditions"?
Professor Haslam: Absolutely.
Q40 Valerie Vaz: One of the other points that arose was how you monitor that. Is that something that you will be doing?
Professor Haslam: It is very difficult for NICE to monitor that, but, again, as the Chairman said at the start, this links into the fact that we are moving into a completely new world, with the Commissioning Board, the Care Quality Commission and NICE working together. Between us, we have to work out a way of monitoring these sorts of things. It is absolutely hopeless all the major players saying, "Not my business, guv," and passing it to somebody else. We have to work out where it fits together. One of the things the National Quality Board has been good at is bringing together all those groups to try and make sure that things don’t fall through the cracks.
Q41 David Tredinnick: On Valerie’s point about cancer care-and I raised this in the Chamber last week at Health Questions-there are organisations out there, like Penny Brohn, for example, that provide a whole range of support services for cancer patients, from therapeutic touch to perhaps some of the herbal homeopathic remedies that we have touched on.
Do you not think, going back to Virendra’s point-I think he was alluding to Ayurvedic medicine, and I raised Chinese medicine-that the regulation in those countries, which is extensive and has been for centuries, is something that we should really give some credit to, rather than falling back on the mantra that has been used by those who very often have a vested interest and are opposed to these therapies, that there is not any proper evidence, when there quite clearly is? Here we have, for example, in this country a Faculty of Homeopathy, which has doctors who have been regulated in the health service. We have other groups who are all regulated, either statutorily or they regulate themselves, and now some of them are coming into a tighter form of regulation. Is it not disingenuous to say there really is not any evidence, when, round the world, there are these very tight regulatory bodies?
Professor Haslam: That is exactly why I said I had an open mind to look at the quality of the evidence that is there. I am not just saying that it has to be produced in England right from square one, but it would be NICE’s responsibility to make sure that evidence was justified. You started that question by referring to cancer and complementary therapies-for instance, people in hospices and so on-and there does seem to be good evidence that people get a benefit from some of those therapies in their dying days. If that evidence is there, yes, that is really important. I don’t have a closed mind to that, but I do have a responsibility, if given this role, to ensure that what we deliver has evidence behind it.
Q42 Barbara Keeley: You have touched in a couple of your responses on the role of patients. Could you tell us how important you think it is that NICE takes account of the views of patients in all its processes? We had a comment from Laura Weir of Patients Involved in NICE that she felt there was no clear role for patient groups.
Professor Haslam: They are absolutely essential. Patients are what we are here for. About 25 years ago I was one of the organisers of a conference in East Anglia on the management of psoriasis. We had a number of consultants, GPs and some nurses and, for the first time, we invited a number of patients with psoriasis. I will never forget, after about 10 minutes of one of the consultants’ presentations, one of the patients banging the desk and saying-and I will modify my language for this audience-"You really don’t have a clue." There was a stunned silence. This particular patient then explained what it was like to get up in the morning, having made sure he set the alarm an hour early so that he could have vacuumed the bathroom floor before his teenage daughter came in and told him he was revolting. It was really extraordinary and very moving. It absolutely convinced me that we have to do this with patients to understand what healthcare is about.
Within NICE-certainly the committees I have chaired within NICE-in NHS Evidence we have a significant number of lay and patient representatives. I would hope and I believe that they are treated in exactly the same way as all other members and that their views are taken on board in the same way. That is critical. One of the witnesses you had before you said how it can be quite difficult for a patient with a mental health problem sitting next to a professor of psychiatry, who is expounding views, to challenge those. It is up to the chairs of those committees to ensure that patient and lay representatives have the voice and the opportunity to make their case.
Q43 Barbara Keeley: But, as I said, from the comments we had from Laura Weir, it seems that they don’t at the moment, or that they don’t feel comfortable with that. In fact, Sir Andrew Dillon accepted that the experience could be improved. He said that he quite understood that the processes that patients were involved in were complex and could be quite intimidating. So engaging with NICE is difficult. I don’t know if it is too early to ask you this, but what ideas do you have about improving the way that patients and those representing them-people like Laura Weir-can be involved? If it is complex and intimidating now, what can be done?
Professor Haslam: This almost links with all my other answers in that I would want to explore and find out what is going on by meeting and talking to the people who are currently involved with NICE to see what their experience is. The people I have spoken to who have worked with NICE as lay or patient representatives have been very mixed in their response. Some have been hugely supportive and enthusiastic. Others have found it quite intimidating and difficult. I would want to talk to as many as possible and then, only when I had got a diagnosis, try and formulate an answer. But I am absolutely with you that this is critical.
Q44 Andrew Percy: On the same point about patient involvement, I was a bit concerned when I heard the comments about the Cancer Drugs Fund. When people say, "We should legalise drugs because they are not as bad for us as alcohol," I always think that that is not an argument for legalising drugs but rather an argument for making alcohol more difficult to get hold of.
Certainly in my constituency there are people who previously, before I was a Member of Parliament, came to me who could not get access to certain cancer drugs, and there are patients now who have had access to drugs they would not otherwise have had access to because of the Cancer Drugs Fund. Given what you have said about wanting to involve patients-and clearly "the big C" is the one that we all fear-can I be clear that, when you assess that, you will take into account the views of patients and the very great public concern there has been about access to different drugs? You are not saying that this is an argument against-
Professor Haslam: Absolutely not. What I was saying, and almost saying exactly what you said in terms of, "The big C is the thing we all fear", was yes, I have dealt with many patients who are terrified by cancer, but "the big C" is not the only killer out there. Therefore, as to solely focusing on cancer, there is only a certain amount of money to go round and the more you give to one condition the less you give to other conditions. That is why I would want to know what the unintended consequences of a wellmeant and impressive policy has been. My feeling is that it should be "patients with an expensive, dangerous condition fund" rather than the Cancer Drugs Fund, assuming that that does not have deleterious effects further down the track with other population groups. We have to look at this across the board. I am absolutely not saying for a moment that I consider that patients with cancer are not deserving of the funding that is available. What I am saying is that they are not the only people.
Q45 Chris Skidmore: I see that you were president of the British Medical Association. I imagine that was an honorific post.
Professor Haslam: It was entirely honorific.
David Tredinnick: "Honorific" or "horrific"?
Q46 Chris Skidmore: Were you at all at any stage uncomfortable with the BMA’s position on the Government’s health reforms? Now that those reforms have come with the Health and Social Care Act, do you regret the position the BMA took?
Professor Haslam: The role of the president is entirely linked with the professional side of the BMA as opposed to the trades union side. The chair of council-who in my time was Hamish Meldrum and is now Mark Porter-deals with the politics and so on. My responsibility was things like research, professional standards, ethics and so on. It is very much focused on that area. So I and the president at the moment, Baroness Sheila Hollins, very much keep out of the political side of it.
Q47 Chair: That leads neatly to the question I wanted to conclude with. The organisation for which you are the Secretary of State’s nominee for the chair is called the National Institute for Health and Clinical Excellence. I wonder whether you recognise that the role of the chair of that organisation is to ensure that it does its job properly within the system, answers the questions that the system puts up to it and so forth, but occasionally does it have a role as a champion of excellence, being the grit in the oyster and willing to say that something is not consistent with a commitment to healthcare and clinical excellence? Is that a key role for the chair?
Professor Haslam: Yes. I have a horrible feeling that I am going to regret saying that, but this comes back to what I have been saying about joining up the system. As from April next year, we will have a quite different world in the health service. The four main organisations that are going to have a major impact are going to be NICE, the CQC, Monitor and the Commissioning Board. It is vital that the leaders of all those are prepared to speak up for quality and to recognise that what we are here for is the quality of care offered to the people of this country. That sounds rather trite, but that is why we are here. So to hide behind and not say the awkward things is an abrogation of responsibility.
Q48 Chair: Sometimes those four organisations need to have their discrete areas of responsibility, and sometimes a particular issue will arise in clinical quality, which is your discrete area in NICE, where it will feel quite lonely to make the case for, or indeed occasionally against-I am not sure what the Roman term is; it is a triumvirate with four members, a quad, in Government terms.
Professor Haslam: It is absolutely their responsibility. Very simply, I see that NICE is there to say what "good" looks like, the Commissioning Board to deliver it and the regulators to check it is happening. That is not rocket science. If we can find a way to make that work, which we are quite a long way from at the moment, we will move the system on in a very significant way.
Chair: Okay. Thank you very much. Thank you for coming.