Services for people with rheumatoid arthritis - Public Accounts Committee Contents

Examination of Witnesses (Question Numbers 40-59)


23 NOVEMBER 2009

  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, 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 or 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.

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