UNCORRECTED TRANSCRIPT OF ORAL EVIDENCE To be published as HC 46-i

House of COMMONS

MINUTES OF EVIDENCE

TAKEN BEFORE

THE COMMITTEE OF PUBLIC ACCOUNTS

MONDAY 23 NOVEMBER 2009

SERVICES FOR PEOPLE WITH RHEUMATOID ARTHRITIS

Department OF HEALTH

MR DAVID NICHOLSON, CBE, MR GARY BELFIELD, PROFESSOR DAVID COLIN-THOMÉ OBE and DR ALAN NYE

Evidence heard in Public Questions 1 - 72

USE OF THE TRANSCRIPT

Oral evidence

Taken before the Committee of Public Accounts

on Monday 23 November 2009

Members present:

Mr Edward Leigh, in the Chair

Angela Browning

Keith Hill

Mr Austin Mitchell

________________

Mr Amyas Morse, Comptroller and Auditor General, and Karen Taylor, National Audit Office, gave evidence.

Ms Paula Diggle, Treasury Officer of Accounts, HM Treasury, gave evidence.

REPORT BY THE COMPTROLLER AND AUDITOR GENERAL

Services for People with Rheumatoid Arthritis (HC 823)

Examination of Witnesses

Witnesses: Mr David Nicholson, CBE, Chief Executive of the NHS, Mr Gary Belfield, Acting Director General, Commissioning and System Management, Professor David Colin-Thomé OBE, National Director for Primary Care, and Dr Alan Nye, General Practitioner and Clinical Adviser for Elective Care, Department of Health, gave evidence.

Q1 Chairman: Good afternoon. Welcome to the Committee of Public Accounts where today we are considering the Comptroller and Auditor General's Report on Services for People with Rheumatoid Arthritis. We welcome back to our Committee David Nicholson, who of course is the Department of Health's accounting officer and chief executive of the National Health Service. Would you like to introduce your colleagues please, Mr Nicholson?

Mr Nicholson: Yes. David Colin-Thomé, the national clinical director for primary care. Gary Belfield, the acting director general for commissioning and Dr Alan Nye, who has a variety of roles but he helps the 18 week team. He is a general practitioner and an expert in the field.

Q2 Chairman: If we look at this Report, Mr Nicholson, we can see that too many people with rheumatoid arthritis have not been diagnosed and treated early enough and that, once they are diagnosed with this debilitating disease, they do not always get the services they need. There are obviously value for money considerations here because many people find it very difficult to work, so if we could get them diagnosed and treated early enough it would both save money and of course help them enormously. We want to try and pursue these issues with you in as positive a frame of mind as we possibly can. What are you doing, Mr Nicholson, to try and make GPs better at spotting the signs of rheumatoid arthritis and referring the patients to specialists early enough?

Mr Nicholson: I think it is worth saying to begin with - I am sure my clinical colleagues at some stage will talk about this - that it is quite a difficult thing to do, the early diagnosis of rheumatoid arthritis. We can see that by the response of general practice and people in the clinical community. It is not through want of effort or trying that people have had difficulties in this area. There are three areas that I think we would focus our attention on. The first one is recognition and diagnosis. There is a whole set of issues around information to patients through patient choices, through the various leaflets and documents that both ourselves and the voluntary sector put out. There is the work that the Royal College of GPs is doing around the training and education of general practitioners. There is a whole set of issues around public recognition of this particular illness. All of those things need to be pursued in terms of recognition and diagnosis. The second issue I think is in relation to timeliness that you describe and again it is very important for us to continue to drive forward the 18 week programme because of the effects that has on rheumatology generally; the publication of commissioning guidance, making sure that our commissioners are absolutely on top of it. The final issue is about the effectiveness of treatment, again focusing on the delivery of the various guidance that NICE has put out about what works and the commissioning guidance that they are about to put out later on this year. All of those things together I think, driven from the department, will have a significant effect in this area.

Q3 Chairman: Presumably you have no trouble, Mr Nicholson, with recommendation (a), paragraph 18 on page nine: "The Department of Health should explore the cost-effectiveness of options for raising public awareness of the symptoms of inflammatory arthritis, including rheumatoid arthritis, to encourage people to present to the NHS promptly after symptom onset." You have no difficulty with that?

Mr Nicholson: I think it is absolutely the right thing to do but that is not to under estimate how difficult it might be. There is not a particular time of the year when this particular condition comes about. There is not a particular patient group, so it is quite difficult to focus your attention and make it happen. We are considering, I think quite actively at the moment, a bid from Birmingham, as it happens, for research into the area of public awareness so we can absolutely focus our attention on things that will work. We are open to that.

Q4 Chairman: Have a look again at paragraph 2.6 on page 17 of this Report which describes how GPs may carry out diagnostic tests. It is still not clear to me why GPs are wasting resources and not getting people promptly to a specialist. They are risking people's health, unless you get this dealt with very quickly. As I understand it - correct me if I am wrong - with modern drugs it is possible on most occasions to arrest this or alleviate it but you have to start very quickly indeed. If you read paragraph 2.6, it seems that either GPs are not sufficiently trained in carrying out these tests or recognising what they do or they are simply not doing it. It is worrying, is it not?

Mr Nicholson: I am sure it can be done better. Just to put it in context - Alan might say something about this clinically in a minute - about a quarter of all the work that general practitioners do is in the area of musculoskeletal problems. Quite a lot of work that GPs do is in this area and it is quite difficult in that group of patients to identify specifically the ones that would benefit.

Q5 Chairman: Let us ask Dr Nye then. He is the expert in this. What is the problem?

Dr Nye: If I may try and put this in context for you, as David Nicholson says, around 20% to 25% of all GP consultations are musculoskeletal related. The average GP sees one new case of rheumatoid arthritis a year, so there is a real issue about sorting that one case out from the many hundreds, if not thousands, of musculoskeletal problems that a GP sees. Added to that there is not a single way in which rheumatoid arthritis presents. It can present in many, many different forms. Further complicating it, when a GP gives standard treatment for a patient with joint pain such as anti-inflammatories, patients with rheumatoid arthritis often respond very well in the initial stages, which can further cloud the issue as to what can be going on. As regards the diagnostic tests, there is a multitude of clinical conditions that can present with joint pain. I think it is often completely appropriate that GPs carry out a range of diagnostic tests to make sure there is not some other condition that requires prompt treatment for their patients.

Q6 Chairman: It says that you are doing quite well on meeting this 18 week standard but, as I understand it Dr Nye, ideally you should be in with a specialist in six weeks. Is that not right?

Dr Nye: That is what the Report ----

Q7 Chairman: You really have to move fast. How could we incentivise GPs to refer people who are diagnosed more quickly, do you think?

Dr Nye: I think there is a number of steps that we have taken. We have published an inflammatory arthritis commissioning guide in the summer of this year, which is there to encourage commissioners, both PCT and practice based, and clinicians to work together to actually redesign and deliver better services to people with inflammatory arthritis and obviously rheumatoid arthritis is part of that. We are also carrying out a range of training events. I am in Leeds on Wednesday looking at shifting services into community settings, so we are trying to improve the services for local health communities, trying to encourage them to look at redesigning and managing this problem better.

Q8 Chairman: Can we talk about depression because this is often a very big problem with rheumatoid arthritis, is it not? If we look at 3.16 in this part of the Report here, we see that only one in seven trusts is providing help for people with depression. Are you doing enough to get this message down to the primary care trusts?

Mr Nicholson: There is no doubt that the relationship between physical and mental health has not been well supported in the past and not well understood, I do not think, in the past. It was one of the reasons that Lord Layard wrote his report in 2006 and it is one of the reasons why we have launched the whole set of issues around psychological therapies. That is why we are rolling it out across the NHS as a whole. You will no doubt know that 75% of our PCTs now have access to psychological therapies as part of a general picture. We do believe that the clinical guidelines set out by NICE that are coming this year will reinforce the importance of psychological therapy to people who have rheumatoid arthritis.

Professor Colin-Thomé: The other issue is that a lot of these patients would see their GPs as well. This often happens with chronic disease. It would be via access through their GP to the psychological therapies and some of the counsellors that we employ ourselves that patients could get access. Just measuring the acute trust referral patterns would not cover the whole picture of referral for depression.

Q9 Chairman: What about supporting people now once they have this disease? If we look at paragraph 4.18, we see that the help that they receive in trying to get them back to work is rally totally haphazard. Is there any more progress you can make on this, do you think?

Mr Nicholson: I think this is a really important issue for us, not just for the general population but also for our own staff. We have 1.3 million people in the NHS, some of whom have long term conditions as well. Today we have announced the Bowman Report on staff health. I will ask David Colin-Thomé to talk about this and people with rheumatoid arthritis in general.

Professor Colin-Thomé: It is an area we have not done well in but I think Carol Black's review last year has given us the focus to do better. The work that generated from her is now rolling out. There are several things. We have had Pathways to Work, which is an opportunity funded by Jobcentre Plus for patients with issues about work to go and get consultation and help to go back to work. We have found that the studies show that that produced a lot more people going back to work or staying in work than the control group. They were not as good for mental health problems and that is why we have this condition management programme which focuses more on mental health problems. We have a major bit of work. Since Carol Black's work, we also have the Fitness to Work pilots, because there are several bits. One is that Carol has recommended now that we should have a fit for work note for GPs rather than a sickness note to change the thinking about people's opportunities. We want to have more opportunity for occupational health and employment advisers to be based in general practice. This is the work that we will be producing from next year as a result of Carol Black's work. For people in work to stay in work, we need support which is what we are offering, but also for the workless some of these programmes will help them get them back to work when they have been out of work for some time.

Q10 Chairman: Some of these patients will be in unbearable pain. What work are you doing to try and ensure that they get the services they need promptly and easily, that they are specially helped, targeted and all the rest?

Professor Colin-Thomé: They are seeing their specialist but also their general practitioner and I think the mixture of the pain relief plus the anti-rheumatic drugs is the way forward.

Q11 Chairman: I mean help day or night.

Professor Colin-Thomé: We have both us available as well as our community nursing services, some of which maybe are not working overnight at the moment, but that is the area we will be looking to try and develop in the future. They would have access. What we have done in this particular group of patients, as with other people with chronic conditions, is at least give them access to a key worker, a case manager, so that, for the more complex end of these conditions, they can have access to somebody. That would not be day and night, but it would give them a tremendous amount of cover, more than they have had hitherto. That is part of our chronic disease programme for all people with chronic diseases.

Q12 Chairman: Could I ask the Treasury a question finally? If you look at paragraph 3.10, we do not want to get fixated on the costs to the economy because clearly people are suffering appallingly from this and what is important is to get them helped and treated, but as far as the Treasury is concerned we see that for those of working age our model suggests that this earlier treatment could result in productivity gains of £31 million for the economy due to reduced sick leave. A very high proportion of people who get rheumatoid arthritis have had to leave work, but there is no particular incentive on the NHS, is there, to fund this? Do you take a view on this when you are funding the NHS? Do you say that this has an enormous impact on the economy and therefore we want to fund the NHS in such a way that they are incentivised to deal with it; or do you just wash your hands of it and say, "It is over to them"?

Ms Diggle: I had precisely the same reaction as you do. It seemed to me that if we could do something about earlier diagnosis it would be extremely welcome because it would mean less living on benefits, more tax coming in. That would almost certainly well cover the cost of extra treatment. However, the sad point of the story is that it is very hard to diagnose. Having talked to the people who are in front of you, I do understand that it is very, very hard to spot people with this disease any quicker. If it could be done, I think there would be a jolly good case for looking at that equation.

Q13 Angela Browning: Dr Nye, are you the clinical lead for the Department of Health in musculoskeletal conditions?

Dr Nye: No, I am not. I am clinical adviser for elective care for the department.

Q14 Angela Browning: Who is the clinical lead in the department?

Mr Nicholson: We do not have one.

Q15 Angela Browning: Why do you not have one?

Mr Nicholson: We do not have a clinical lead for every condition. If we did, there would be over 200 clinical leads in the department. It is not necessarily the case that, because you have a clinical lead, it means that focus is put on it. There are lots of other services that improve without having a clinical lead per se at national level.

Q16 Angela Browning: When we see that back in 2004 there were guidelines set down about the length of time between referral from GP to a consultant, has anybody taken the initiative within the department to review it, if there is no clinical lead? I am asking because obviously we have all read about this window of opportunity.

Mr Nicholson: Just because there is not a clinical lead does not mean there are not clinicians involved in all this. We put it into the pathway guidance that went out. We have strengthened it. It will be in the NICE guidance that comes out this year and we expect all organisations to follow that guidance.

Q17 Angela Browning: Could I just ask you to look at page 19, paragraph 2.12? We heard a little bit just now about the difficulty because the average GP would only see one case presented a year and obviously with patients like that one can understand it would be difficult to just pick up these odd cases. There is quite a damning paragraph there about the way trainee GPs are still being tutored in musculoskeletal conditions. It says here, "Seventy per cent of GPs had tutorials ... receiving an average of two hours teaching" and the most common topics were back pain, joint injections and osteoarthritis. Just where does rheumatoid arthritis feature in all of this?

Professor Colin-Thomé: It would fit in with musculoskeletal conditions. When you are a GP registrar, a GP in training, which is a three year programme, it covers a wide range of the responsibilities. Musculoskeletal conditions cover a lot but rheumatoid arthritis is a part of that so it would be covered in that training. Then we have to learn about cancer, diabetes and all the others, so it is probably an area that maybe we should improve but everybody else has pressures as well as to what slice of the GP training programme they get.

Q18 Angela Browning: It does say in this paragraph that the GPs who were surveyed here felt that their training on musculoskeletal conditions was inadequate.

Professor Colin-Thomé: Completely. In fact, that is why we have the Royal College of GPs focusing on this - Alan is involved with working with them - looking at improving the curriculum around postgraduate education for GPs. The issue is that if you are a generalist, which I was until I retired, every condition is part of our responsibility so trying to allocate it sufficient training for all is quite a difficult area. Every condition comes to us, whether it is diabetes, angina and so on and so forth. In that, if there has been a highlighted need that GPs are identifying, that is why we are looking with the Futures Group at how we might do better training for GPs. I can see why in the past there has been so much conflicting pressure. Now we have some harder evidence I think your group, Alan, is going to be focusing on this.

Dr Nye: The Rheumatology Futures Group and myself, the Royal Colleges and some patient groups are working to help produce some educational material for GPs to help them spot those difficult to detect early warning signs. Hopefully, we will produce something by later this year or very early next year on that.

Q19 Angela Browning: I think, Mr Belfield, this is probably for you. We have heard that once a GP has made a referral time is of the essence etc., but we understand - I must say I am a little confused by this - that because of the way commissioning is exercised once a consultant has seen the patient for the first time they go back into the care of the primary care field and that there is great difficulty for some consultants in being able to actually initiate follow-up appointments. Everybody is shaking their heads but we have this on very good evidence. It is something I really would like to be followed up, because I understand it is not to do with patient care per se; it is to do with the ramifications of how commissioning is carried out in this country. It is to do with money, I think.

Mr Belfield: I do not recognise that.

Q20 Angela Browning: You do not recognise it at all?

Mr Belfield: No, in the sense that PCTs do not dictate clinical practice. If somebody is seen in hospital for a first out-patient appointment, it is then up to the consultant in the hospital to decide whether the patient is brought back. The PCT will not stop that happening.

Q21 Angela Browning: We have been told quite emphatically by the charitable sector dealing with this condition that that does not happen. It is quite difficult. They sort of go back into the system and you have to initiate the whole thing from scratch for a second or follow-up appointment. If somebody is in crisis or something has flared up and they need to see a consultant, the fact is that they have to go through the whole system again. They are not as most hospital conditions would be. If someone is on the hospital register, they would be seen by that consultant again pretty quickly. There is a problem here and I have been quite convinced from what I have been told that you should be investigating this. I am asking, through you Chairman, whether you would investigate this.

Mr Belfield: I am happy to because I am concerned by what you have just said. I will definitely take that away. There are examples where PCTs, with their clinical colleagues, GPs, etc., are putting in place systems to make sure that the practice in hospital is not over-referring in terms of seeing people too many times, but that does not sound like what you are describing to me.

Q22 Angela Browning: No, it is not.

Mr Belfield: Outside the Committee I will take that away and look at that for you.

Q23 Angela Browning: Thank you very much indeed. Could I just finally come on to this question that has already been touched on? This is the question of people who are diagnosed and are of working age. We see from the statistics in the NAO Report that 45% of the 580,000 over 16 are of working age and it is a cost, estimated in this paper of 1.8 billion to the exchequer of loss of money in terms of people who are having to give up work. We understand after two years it is quite a common thing for people not to be able to carry on coping with this condition. If they were diagnosed earlier and had maintained treatment, they would certainly be able to have a much more fulfilling life and carry on working. One of the things that worries me enormously is where this fits into this new scheme of benefits that the DWP have responsibility for, because already we have seen with other conditions - I have to say I have not had a rheumatoid arthritis condition - I can easily see, if this is one of those conditions which is not really clearly understood, there is not a lot of expertise out there, let alone among DWP assessors. Certainly I have had some very harrowing accounts in my own constituency of DWP assessors recently in the way they have dealt with people recovering from cancer etc. I suppose, Mr Nicholson, this is for you. What dialogue are you having with the DWP about this condition?

Mr Nicholson: We have had dialogue with the DWP about it but of course the issue is not the condition itself. It is how it presents and the impact on individual patients. The thing you have described there was not part of those discussions, I have to say. Once the diagnosis is made, it is pretty clear that that is the condition. There is a lot of expertise around about its treatment and there is a lot of understanding about what the prognosis for individual patients is. It is not that kind of open ended thing that you might get with other conditions. If there is evidence to show that patients with rheumatoid arthritis are suffering potentially, then we would like to see it because we genuinely have not seen it.

Q24 Angela Browning: The reason I am flagging it up is because it seems to me that this is another one of those conditions where for example people get what they call "flare up". You could be properly managed in terms of medication and medical supervision, holding down a job and then you get a flare up and you are suddenly off work again. I just wonder how much these assessors and people who sit on tribunals actually understand this condition when it presents. I say that because there are so many conditions where you need a specialism to make a proper judgment about people and their ability to work.

Mr Nicholson: The DWP are satisfied that they have the expertise and we can certainly help and support them.

Angela Browning: I hope you will help them because I do not have your trust and faith in them having expertise in some of these rarer conditions.

Q25 Mr Mitchell: There seems to be a real problem of ignorance or, to use the proper medical term, lack of information on the part of the public and GPs about this issue which is leading to delays in referring to the doctor or doing anything about it. I see from paragraph 2.2 that between half and three quarters of people with rheumatoid arthritis delay seeking medical help from their GP for three months or more and around a fifth delay seeking medical help from their GP for a year or more. I can see from table one that there is a lack of information on the part of the public about the disease and from table ten that most people do not know much about it but the correct answers are usually under 40%. Why is this? Why the delay? They must be in pain. Do they just sit and grin and bear it or what?

Mr Nicholson: I think Alan Nye would be in a good position to be able to tell you because he sees those patients directly.

Dr Nye: I think what you say is true. Patients are generally sometimes quite stoical and they do not put aches and pains down to what can be a potentially very serious, and yet treatable, condition. What you also have to bear in mind is the very variable nature which rheumatoid arthritis can present in its very early stages. People can sometimes have problems for a day or two and then it can settle down and they can be quite well for a period of time. They tend to forget almost that this happened. It is only when things tend to snowball and they have difficulty carrying out their job or other activities that they sometimes seek help. As I have previously mentioned, they may be going to their chemist and buying some over the counter medication which is really very helpful. Again, they put it down to a trivial problem rather than seeking help. It is unfortunately due to the nature of the problem in some ways.

Q26 Mr Mitchell: It is the intermittent impact?

Dr Nye: It can be, yes. There is a type of rheumatoid arthritis called palindromic which presents in exactly this way, where it is bad for a few days. Then it goes and it comes back again.

Q27 Mr Mitchell: I see from paragraph 2.3 that there has been no real improvement in the number of people referred to their GP within three months between 1995 and 2005. That is amazing. What public education have you been doing to encourage people to go to their GP?

Dr Nye: There is a number of steps. One is again this work of the Rheumatology Futures Group with the Department of Health and the Royal Colleges. We are looking potentially at some posters which may go up in GPs' surgeries and other areas which relate to the warning signs which they should take seriously.

Q28 Mr Mitchell: Have you anything on the internet? Most people seem to prescribe their treatment from the internet these days rather than going to their doctor. What is available on the internet?

Dr Nye: There is a wealth of high quality internet resources. There is the NHS Choice's website and something else we are developing as a development of the inflammatory arthritis commissioning pathway is a patient layer, a layer specifically designed for patients to be able to easily access high quality, validated information which will actually cover the whole of the patient journey from self-care, presentation in primary care, diagnosis and ongoing.

Q29 Mr Mitchell: If I ring NHS Direct, what will they tell me?

Dr Nye: I had a look at the web based decision tool before coming here. Their advice is to go and seek help from your GP.

Q30 Mr Mitchell: When you get to the GP, there seems to be a problem in the sense that GPs do not know enough about it and are tending to refer people for tests which are not necessarily useful. I see from 2.6 that the blood tests for rheumatoid factor detect less than half of people who will eventually be diagnosed with arthritis. The x-rays may well be normal and therefore do not present the symptoms. Is this because the tests need specialist interpretation?

Dr Nye: No. I think there are a couple of points around the tests. Firstly, it is completely true to say that in early rheumatoid arthritis the blood tests and the x-rays are completely normal, but I think it is also fair to say that there are many other conditions which can present with general aches and pains, for which it is completely appropriate for the GP to carry out these investigations. I think it would be remiss of general practitioners not to thoroughly investigate their patients but to bear in mind that in rheumatoid arthritis they should not be unduly reassured by normal results. What the inflammatory arthritis commissioning pathway highlights is that they should refer on clinical suspicion and not rely on the results of tests.

Q31 Mr Mitchell: GPs do not appear all that well informed. They do not appear to be well educated in the matter at medical school from what I see in the Report. Would it not be better if people presenting were referred immediately to a specialist? Why do you not just instruct GPs to do that?

Dr Nye: I think you have to bear in mind that 20% to 25% of all GP consultations have this musculoskeletal element. If we were to tell GPs to refer a quarter of all the patients they saw, the services would be swamped and completely overwhelmed. Patients needing expert care ----

Professor Colin-Thomé: It would be about 80 million people. GPs see about 300 million people a year so if a fifth of those were sent to hospital I think they would not cope. The volume that goes to general practice is huge.

Q32 Mr Mitchell: What proportion of those will have rheumatoid arthritis?

Professor Colin-Thomé: About 25% will have a musculoskeletal condition. As we were saying, for new rheumatoids, the GPs will see less than one a year. Some of them are more obvious. I think there is a mention in the NAO Report about 40% of patients going to see a doctor quite quickly and they get referred. I presume those are the ones with more extreme symptoms. Many of them do not have that severity early on and that is where it gets too difficult to differentiate that from all the other ----

Q33 Mr Mitchell: It is a vicious circle, is it not? If they only have one or two cases a year and they do not recognise the need to refer them to a specialist, we will have more delays.

Professor Colin-Thomé: Yes. When you say GPs are not informed, I think most people would know about rheumatoid arthritis but it is the difficulty of diagnosis in the early days that is the issue. Yes, we need to do more as we have described about raising the profile and the information for GPs, but nevertheless in my knowledge of my consultant colleagues, it is not always easy for them to diagnose either. It is quite a difficult area in the early stages for many of these patients.

Q34 Mr Mitchell: I see the Report indicates that specialist nurses can make a big contribution here. How many specialist nurses are available? How many arthritis clinics do you have?

Professor Colin-Thomé: I do not have a figure. In the Report I think there are only about a couple of hundred specialist nurses.

Dr Nye: It is in the 400s, I believe, just relying on my memory.

Q35 Mr Mitchell: Is that going up?

Dr Nye: I believe it is. I think you have to bear in mind the NICE guidance on rheumatoid arthritis which highlighted the importance of multidisciplinary teams and nurses as a vital part of that team. It was only released in February of this year and there is a lag of about a year to 18 months to train these rheumatology nurse specialists. I would like to think that the numbers of nurses, as the NICE guidance is being implemented, are increasing.

Q36 Mr Mitchell: This looks like an area where there would be enormous advantage in spending quite a bit of money on a public education campaign through television, leaflets or surgeries or whatever, because the earlier you treat people the longer they can stay working and the less they need surgery and all the rest of it. Why do you not go in for that?

Mr Nicholson: I think we are exploring that as a possibility at the moment. If we are going to do it, we want to do it right.

Q37 Mr Mitchell: How much would it cost?

Mr Nicholson: It depends what you do, does it not? It depends whether you have television advertising.

Q38 Mr Mitchell: How long is a piece of string?

Mr Nicholson: Yes. You have all of those things and also what is effective because it is not a particular time of the year. It is not like 'flu or something like that where you have a particular time of the year when you would concentrate your activity. It is throughout the year on every occasion. I think we are exploring that as a possibility. We certainly have not ruled it out.

Professor Colin-Thomé: It is difficult though because if you look at cancer, where there has been a lot more publicity, one of the reasons why our outcomes were worse in this country was because patients were slower to go to their doctors. That is with a lot of public information. As David says, we need to find ways which are proven so that we can communicate. Otherwise we will spend a lot of money on unnecessary advertising which does not have the impact we want. For cancer it is improving but it has been very slow to get people to go to their GP. That is one of the gaps that we have in this country for instance.

Q39 Mr Mitchell: Cancer indicates the success and the possibilities of these disease campaigns. There has been a dramatic improvement in people getting quick opinions from doctors and they are quickly referred to specialists and to hospital and being quickly treated in cancer, which has not occurred in rheumatoid arthritis.

Professor Colin-Thomé: That is true but there is still a problem for us in this country of people who are getting the symptoms before they are seen in cancer as well. That has not changed much at all.

Q40 Mr Mitchell: The number of people treated quickly has changed.

Professor Colin-Thomé: I agree. All I am saying is we are looking at the public information approach to try and get the lay person's knowledge higher. Even in cancer we have found huge difficulty to make that effective on that particular area I am talking about.

Q41 Mr Mitchell: I would not discount the possibility of having a campaign on this issue, given the benefits which the Report indicates. Can I just move on to the question of referrals from the doctor to the specialist? What is the reason for the delays there? Is there a problem with the procedures of some primary care trusts?

Dr Nye: No. I think as soon as a GP suspects there may be inflammatory arthritis they will do a referral. I am not aware of any delays which would interfere with the process. It is actually raising the suspicion. It is making that initial diagnosis in primary care which is important. I am not aware of any other delays with the referral process.

Q42 Mr Mitchell: What is the potential for treatment? Unremittingly destructive, vroom. Relapsing and remitting is vroom, vroom, vroom. That seems to be in the majority of cases and then suddenly in 10% to 15% of the cases it is just a short impact. Do we know why those differences occur? Is it a failure of treatment?

Dr Nye: No, we do not know why. There are different patterns of presentation and progression of rheumatoid arthritis. We know certain patterns of symptoms and blood results are quite bad prognostically, but again as to why one individual with it has the relapsing form and another individual has the gradually progressive we do not understand why that is the case.

Q43 Mr Mitchell: Are the ones that are unrelentingly destructive the ones that are referred to surgery?

Dr Nye: No. If you manage to get patients controlled within the first year of their illness it is possible, with some of the modern drugs, to prevent much of the pain and disability that traditionally patients with rheumatoid arthritis have.

Q44 Mr Mitchell: They can carry on working?

Dr Nye: Yes.

Q45 Chairman: As this is being shown on the television, describe for the public what they should look for in these people. What signs are there? What should they be doing?

Dr Nye: Part of the campaign we are looking at with the Futures Group has borrowed something from the popular TV show, The X Factor and we are calling it the S factor. It talks about swelling, which is swelling of the joints, particularly of the small joints of the hand.

Q46 Chairman: This happens quite quickly, does it?

Dr Nye: This can happen overnight. You can go to bed normal, so to speak, and wake up almost unable to move, unable to fasten your buttons or fasten your bra as a woman. Swelling is one. The other is stiffness. Patients with rheumatoid arthritis often complain of profound stiffness of the joints. The other is a test called the squeeze test. That is the third S. It is where you actually compress across the knuckles of the hand or the same joints in the feet and it is painful. That is the most validated examination test for an inflammatory arthritis. There is a final S factor point for patients with ankylosing spondylitis where young adult males develop quite severe buttock pain and morning stiffness in their back. The condition there is almost harder to diagnose than rheumatoid arthritis with average delays of two years before diagnosis. That is a real challenge to try and get patients to present and for doctors to identify and refer early.

Q47 Chairman: Given that this is in many cases an utterly debilitating disease, are you getting this message out to people with posters in surgeries and advertising campaigns? The signs we are talking about seem to me to be fairly clear and simple for the public to understand.

Dr Nye: I have simplified things quite significantly but I think what is important is to raise general awareness amongst primary care clinicians and for the patients that every ache and pain which they may have occasionally, if you have these other signs, can be serious. This is still work in progress and we would hope to be able to produce these posters and education within a few months. Hopefully in the near future we will be able to take this further.

Q48 Chairman: How many of these symptoms that you are talking about which can happen very quickly could just be ordinary arthritis?

Dr Nye: Quite a few.

Q49 Chairman: Like in the squeeze test?

Dr Nye: Yes, but what we would hope GPs or practice nurses would consider is that if they have a patient with these we want them to think to themselves: could this be an inflammatory arthritis? If they think that and there is a possibility, they should act and refer for a specialist assessment. Because the diagnosis is so hard to make in some cases, what is important is that GPs or practice nurses act on suspicion and do not rely on blood tests, x-rays or other things. We are trying to speed up that patient journey.

Q50 Chairman: As your colleagues said, GPs are seeing 80 million people a year with these sorts of aches and pains.

Dr Nye: That is right.

Q51 Chairman: Presumably all the incentives are the other way, are they, because they are saying, "I cannot refer too many people"? That is the difficulty, is it not?

Dr Nye: Most GPs are incentivised to do the right thing for their patients. That is what most GPs are in the job to do. What we are trying to do is to get them to think about the possibility of an inflammatory arthritis. If they feel that exists, then we are asking them to act.

Chairman: Thank you very much for that. That is a very clear exposition. I wish all our witnesses were as impressive, Mr Nicholson, particularly permanent secretaries.

Q52 Keith Hill: Can I begin by saying how much I appreciated the NAO's DVD called "Patient Stories" which is attached to the NAO Report? In this Committee we most often deal with just money but in this case we are actually dealing with human beings and a lot of pain. I thought the DVD brought home exactly the human dimension of this particular inquiry which is so important. Although we deal primarily with money in this Committee, there is a value for money angle in the appropriate treatment of rheumatoid arthritis because, I think as the NAO Report demonstrates, if there is one area of medicine where early intervention - making the investment to stabilise the condition - can produce an economic return to society, then this is the example above all. What was so obvious in the DVD and those courageous people, if I might say so, who agreed to go on the DVD was their desire to go on working and making a contribution to society. That is I believe something that we should want to encourage. I want to focus on the issue of relationships and communications between, as it were, the front line of those who treat rheumatoid arthritis and the commissioners. Let me just go back to one or two questions that have already been asked again. First of all, this issue about the extent of musculoskeletal problems presenting to doctors. This is probably one for David Nicholson. Let me ask again: are you satisfied that there is a proportionate amount of training in a GP's education and degree which is devoted to musculoskeletal issues of which rheumatoid arthritis is one case?

Mr Nicholson: No.

Q53 Keith Hill: What are you going to do about it?

Mr Nicholson: In a sense, that is why we have asked Rheumatology Futures and the Royal College of GPs to give us some advice about how we might best do it. It is relatively easy to say no, it is not, and we need to do more. Unless you extend the amount of time you spend training people, something else has to go. That is quite a difficult set of issues to deal with. In principle, we think that is absolutely right. We want to encourage training to be changed in that way but we are asking for advice about how best to do that.

Q54 Keith Hill: I suppose the fact that, as we have heard frequently, up to 25% of cases presented to doctors are of that character would certainly suggest that more extensive training should be given in that area, because that is actually the best preparation for being a GP.

Professor Colin-Thomé: As a general point, do we want to extend the years that GPs are in training, currently it is three years once you have left your hospital work. Certainly we are going to go to four years and the Royal College of GPs is recommending a five year programme because of the sheer complexity of most of the conditions that now are in primary care, to take your point. We are looking to extend the training before you become a fully qualified principal in general practice.

Q55 Keith Hill: That is extremely interesting and something new to me. That would make the British experience I think more comparable to that for example of our continental neighbours. That is a different matter. Let me come back to this issue of the musculoskeletal conditions. Perhaps this is one for Dr Nye. How does the severity of rheumatoid arthritis compare with the other conditions a doctor GP is likely to come across in the course of his or her work?

Dr Nye: A doctor sees a full range of possible conditions from those who are terminally ill to those with quite trivial illness. Rheumatoid arthritis is a very disabling illness and often impacts on every aspect of a patient's life. I think what is important in managing conditions like rheumatoid arthritis and the other life long, long term conditions is the concept of having a multidisciplinary team, primary care and the specialist services working together to deliver the best standard of care for the patient. I think rheumatoid arthritis is a great example where it is possible for specialist services and primary care to work in harmony together with patients receiving the best care on a day to day basis from their GP and, when things are not going well or when there are flare ups, maybe seeking expert help from a member of the specialist team, whether that is a consultant or a nurse specialist. What the Inflammatory Arthritis Pathway encourages is for commissioners, primary care and specialist services to work together to look at redesigning services. Rather than working in separate bunkers between GPs and hospitals, you are actually working together to deliver coherent services for your patients.

Q56 Keith Hill: You have anticipated some questions I wanted to ask about IAP, the Inflammatory Arthritis Pathway. That is supported by the Department of Health and I understand that you played a part in developing it. Can you say a little more about what it is and the benefits you expect it to confer?

Dr Nye: Sure. It is an 18 week commissioning pathway. Its primary purpose is to describe an idealised patient service. It covers the complete patient journey from self-care, initial diagnosis, the patient journey in primary care covering common presentations, investigations and treatments that can be managed in primary care. It then moves on into specialist services, again mirroring the presentation, investigations and treatments that are delivered from specialist services. Finally, there is a section on tertiary care where there are highly complex needs for patients because, as I am sure you are aware from reading the Report, rheumatoid arthritis can sometimes be a disease of the whole body involving the kidneys, the eye and other organs. Some patients can be highly complex and require a very, very skilled degree of clinical input. The pathway describes the whole possibility of what patients with inflammatory arthritis may need and actually encourages clinicians and commissioners to work together to look at redesigning services locally.

Q57 Keith Hill: I am sure it is absolutely the right way forward. Presumably the reason why you, others and the DoH have developed it is because actually the reality falls far short of that at the moment because there does seem to be a good deal of evidence that primary care trusts, for example, do not seem to have good information on the extent and costs of rheumatoid arthritis in their local populations. They seem to provide somewhat limited services on the whole and equally GP practices also seem to be deficient in commissioning rheumatoid arthritis services. Is that a kind of reality that you would recognise?

Dr Nye: I think the effect of NICE guidance, the National Audit Office Report, the Inflammatory Arthritis Pathway is that they are a force for good. They are a force to make local health communities look at the services they are delivering and ask themselves questions on where they can improve. I think it is definitely a force for change for the better.

Q58 Keith Hill: Would you be surprised to learn that some clinicians report that they have no direct communication with commissioning organisations as a result of which the complexity of the disease is simply not recognised?

Dr Nye: Speaking personally, in Oldham where I work I have a fantastic relationship with our commissioners. Aside from my role as a GP, I also run one of these early arthritis services covering rheumatology, orthopaedics and chronic pain. We have an excellent relationship with our commissioner. I think it is possible as a clinician to foster and develop good relations with your commissioner. I think the pathways encourage you to sit down and discuss problems together rather than again acting in silos.

Q59 Keith Hill: Lancashire seems to be rather good at this sort of thing because the Members of the Committee have received a rather impressive document about the rheumatology unit in Bolton. Lancashire is obviously a bit of a pace setter in this regard. Is it happening elsewhere?

Mr Nicholson: It is not happening elsewhere in quite the way we would want everywhere. I am sure Gary will talk a little bit about commissioning generally. In a sense, that is why the pathway is so important. That is why the NICE guidance is so important. That is why the NICE commissioning guidance coming out at the end of this year will be so important because there we are setting a kind of national benchmark, in a sense, for commissioners about what we expect in the future.

Mr Belfield: In preparing for this, I looked around the country to see what PCTs were beginning to do because there is a degree of criticism in this Report. I think it is fair to say that last year we asked PCTs to do a needs assessment of their population about the things that were really affecting health. They chose things like stroke, cancer, heart disease, etc. to focus on in terms of their commissioning decisions, but we are seeing this year - certainly in the last six months - an increasing look with PCTs thinking about long term conditions. Just in the last month or so, I have heard of three PCTs that are actually changing their services for arthritis in terms of self-care education, for example in Norfolk and Portsmouth. Tameside and Glossop have a consultant led rheumatology service going into the community. If this Committee were to ask again, say, in 12 months' time, I think you would see a very different picture with PCTs beginning to reflect much more about long term conditions in their commissioning strategies.

Q60 Keith Hill: That is also encouraging. Is it the case that this kind of holistic approach is expensive and need it be expensive?

Mr Belfield: No, I do not think that it should be expensive. If you get this right first time, as the Report says, and you help identify the need early enough, then in the longer term it saves money. Certainly the Department of Health has a very strong view that quality should not cost because getting it right first time should save taxpayers' money.

Q61 Keith Hill: It sounds like a propitious development, Mr Nicholson. Is this something you are going to put your back into?

Mr Nicholson: Absolutely. Gary is absolutely right. This is not an issue about huge amounts of extra resource. This is about organisation, management, planning and execution.

Q62 Keith Hill: Smart solutions, in other words?

Mr Nicholson: Yes. It is all of those things. That is why it is so important we set national benchmarks and set out our expectations.

Q63 Keith Hill: This I think is one for Mr Nicholson: do you recognise the risk that the focus on getting the newly identified rheumatoid arthritis patients through the system can lead to slower or indeed deficient treatment of existing patients?

Mr Nicholson: No, I do not see the connection at all. We have grown capacity significantly in the NHS over the last few years. As you have heard me talk about on numerous occasions, before we had the capacity to deal with this, it is for relatively small numbers of patients.

Q64 Keith Hill: It is mentioned for example in the DVD that patients already in the system seem to perceive they have problems in accessing the services they are looking for because of the concentration of units on meeting the 18 weeks target. That is not something that you recognise?

Mr Nicholson: No, I do not think so. To be honest, with the 18 week pathway and the way it is designed, we would not expect that to be one or the other.

Q65 Keith Hill: Could I ask the NAO to come in on this point?

Ms Taylor: If you look at paragraphs 4.6 and 4.7 and also to an extent 4.10, some of the evidence we collected is that people are having problems when they have a flare up or in continuing to get treatment after the initial diagnosis. There is a number of examples given there that were reported to us by both the acute trusts and through our patient survey.

Professor Colin-Thomé: The figure you have given for rheumatology is that about a fifth of the cases are for rheumatoid arthritis. If we could get, as we have in some places, primary and community services working with our hospitals, some of the repetitious work for people who are not having flare ups could be done quite well in primary care. Certainly in my practice - and I know in Alan's - we used to have a rheumatoid arthritis nurse working with us for the general reviews of patients once significant symptoms had settled. Working with our physiotherapy colleagues, we could obviate the need for a lot of referrals to orthopaedics or rheumatology because we needed an opinion about better care. One of the issues for us, which practice commissioners will have to major, is how do we get that better system. A lot of the reason we have expense in our health care system is because of duplication. You find that a lot of patients are seeing the specialist when they are not acute and also seeing their GP and so on. That is the area where we could make a significant improvement in quality, release our consultants for more time for flare ups and acute care and yet still look after patients in a systematic way. I think that is the real test for us where there are examples already happening, but not widespread enough yet.

Mr Nicholson: I hear these comments about choose and book, which is the issue that is raised. I do not believe that these are reasons why we cannot organise the services better than we do. It is, at the end of the day, a mechanism for planning capacity and there is no short cut for PCTs and acute trusts planning their capacity properly. Choose and book makes you do things in a much more transparent way which I think is a good thing and I do not believe that choose and book is the reason why people are having problems with that service; I think we need better organisation.

Q66 Angela Browning: We have read that the average age for this condition to start is about 40, or people in their 40s; it is not necessarily a condition of old age. It seems to me increasingly that where people have developed it in their 40s or 50s - I have a certain personal interest, not that I have rheumatoid arthritis - and where people present with chronic conditions, they get specialist treatment up to a point and then they pass a certain age barrier and they suddenly become the responsibility of geriatricians. I wanted your assurance that in a case like this, for rheumatoid arthritis, that people who are, say, over 65 or over 70, would continue to get the specialism from the consultants and not from a generalist?

Professor Colin-Thomé: The answer is yes, and in fact a key responsibility lies with the general practitioner deciding, once they are referred, who is the most appropriate. If you are a care-of-the-elderly specialist it is more to do with the organisation of care for people with lots of chronic problems, but for specific things like diabetes and so on they will need to see a specialist, and that generally happens. If there was a rule to say otherwise, I think you would find a lot of people like Alan and I would say that this was a nonsense and challenge it quite strongly. The answer is, you have to find the specialist who is most appropriate for the presenting problem, and to say you have to go off to a different system is not right. As Alan says, this report and the NICE guidance will reinforce that even more strongly.

Mr Nicholson: There should be no age cut-off, either implicitly or explicitly for rheumatoid arthritis.

Angela Browning: That is very encouraging, thank you.

Q67 Chairman: We have had a very helpful submission from the National Rheumatoid Arthritis Society and they have submitted an analysis to the Committee highlighting the difference in spending on rheumatoid arthritis between PCTs - £5.68 per head in Bexley and £17.58 in Gateshead; the English average is £10.97. What is going on? Are they just diagnosing it much better in Bexley and need to spend less, or are they just being mean in Bexley? What is happening?

Mr Nicholson: I think there is a whole set of issues. People are collecting the information and sharing it and looking at it for the first time, and you may find in those circumstances that people are collecting it and showing it in different ways.

Q68 Chairman: We need to get to the bottom of this, this is very important.

Mr Nicholson: I agree. That is one of the issues. The other issue is that the populations are different as well, in terms of the age structure of the population. What we have not done is connected those two things together.

Q69 Chairman: It is hard to think that there is such a difference in the age structure in Bexley and Gateshead. There is something else going on here, I suspect. The Society is unable, they tell us, "... to conduct an assessment to ascertain whether there is any correlation between levels of spending and service quality since the findings of the NAO's survey of the quality of acute care are anonymised. The Public Accounts Committee may wish to consider investigating this directly, or asking the Department of Health to do so." I am now asking you to do so.

Mr Nicholson: We would be happy to investigate because it raises a whole series of issues.

Q70 Chairman: We do not want a postcode lottery here, do we?

Mr Nicholson: No.

Q71 Chairman: You mention Dame Carol Black, who is mentioned right at the back of the Report. Do you think she would be satisfied with progress if she was here?

Mr Nicholson: No.

Professor Colin-Thomé: No. Whenever you write a report, and we have all written our reports, you are frustrated by the pace of progress, and I think that is an issue. In answer to your previous point, of course Carol's work straddled both the DWP and the Department of Health, to try and get more coherent working together, but in terms of the programme I think she would have expected more to have happened. We are putting a lot of store on these fit-for-work pilots, because that is a more comprehensive look at it, not just whether GPs have fit notes but getting more occupational health people working at earlier interventions and so on and so forth to see if that is possible. But the answer is, whenever any of us write a report, we are always frustrated by the pace of progress.

Q72 Chairman: That is a very honest answer. Thank you for that. I think that concludes our hearing, gentlemen, thank you very much. I think it has been an important and interesting hearing. As I often say on these occasions, we are very proud of the fact on this Committee that we have managed to put a spotlight on certain conditions, such as hospital-acquired infections, dementia, stroke, over the years, and we are very grateful to Karen Taylor for all the wonderful work she does for this Committee in the field of health. She has done a lot of work over the years to bring these subjects forward. So we are very grateful to you, Karen. May I just say that although we were told that a GP may only see one case a year, this is still an enormous problem. There are, we are told, an estimated 580,000 adults in England who have rheumatoid arthritis, and there are 26,000 new diagnoses each year. It costs the NHS £560 million a year in health care costs but the cost to the economy is £1.8 billion a year. What is even more worrying is that three-quarters of people with rheumatoid arthritis are first diagnosed when of working age. Women are more than twice as likely as men to have the disease, and one-third of people will have stopped working within two years of being diagnosed with rheumatoid arthritis. So I am sure you would agree, Mr Nicholson, this is a very serious problem indeed. It is extremely worrying that the public awareness of the disease is so very low. Before I got involved in this, my own personal awareness of this disease, I have to accept, was very low indeed. We need to ensure that diagnosis comes much quicker because it is undoubtedly true from what we have heard today that if you are diagnosed quickly you can arrest this disease. We expect to have a very helpful but hard-hitting report, Mr Nicholson, to encourage your efforts in this field.

Mr Nicholson: Thank you.

Chairman: Thank you.