Services for people with rheumatoid arthritis - Public Accounts Committee Contents

Examination of Witnesses (Question Numbers 20-39)


23 NOVEMBER 2009

  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 16s 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.

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