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The Countess of Mar: My Lords, before the noble Lord sits down, perhaps I may reassure him that I recognise that the report is for recommendation. However, as I tried to illustrate with the conference to be held at the John Radcliffe Hospital, it is being misinterpreted already.
Lord Clement-Jones: My Lords, I entirely agree with the noble Countess. That is why it is so important to ensure that we get it into the professional bloodstream and that there is no question about the CMO's recommendations being taken seriously.
7.51 p.m.
Baroness Noakes: My Lords, I congratulate the noble Countess, Lady Mar, on initiating the debate today. It is an important subject and it raises many issues. The noble Countess concentrated on the different approaches to CFS/ME, in particular the
different schools of thought—the biomedical and the bio-psychosocial—where there are clearly different approaches and marked fault lines between them. Indeed, I am shocked by the way in which the debate appears to have been conducted in the past. One hopes and prays that peace might break out and that the medical world might come together to find agreed solutions for this distressing illness.In preparing for the debate, I tried an Internet search for chronic fatigue syndrome and got 284,000 hits world-wide and more than 17,000 in the UK. I tried NHS Direct and got a more manageable 1,089 references. I also tried searching for myalgic encephalomyelitis, which produced fewer hits wherever I tried. But interestingly, when I tried NHS Direct it asked me whether I meant "imagined encephalomyelitis".
That is a significant piece of programming embedded within NHS Direct. Part of the problem has been that CFS or ME has not been regarded as a definite illness by a large number of healthcare professionals. That has led to many of the problems to which the noble Countess and the noble Lord, Lord Clement-Jones, referred. The report is welcome for its clear recommendations that the NHS and healthcare professionals should treat CFS/ME as a chronic illness, with all that flows from that. While I cannot take part in a debate on the science of the causes or the way in which CFS/ME should be approached, we should recognise that the report has done a service in identifying it as a chronic illness and producing a number of recommendations. I want to talk about those today.
The working group correctly recognised that considerable further research was urgently needed into a whole range of issues including aetiology, therapeutic interventions, cost-effectiveness studies and many other areas. The Government's response was to endorse the need for more research and to note that the Medical Research Council has been asked to develop a strategy for biomedical and health services research. They stated that the MRC would appoint an independent scientific advisory group and the terms of reference and a timetable were to have been agreed by the end of February 2002.
Since then, there appears to have been a deafening silence. I could find no trace of an advisory group, terms of reference or a timetable. Certainly the MRC's website is completely silent on those aspects. Like other noble Lords who have spoken today, I hope that the Minister will be able to enlighten us on the status of the programme and when the members of the working group will be reporting and what they will be covering. I remind the Minister that that work was described as "urgent" by the working group.
The working group made a number of recommendations concerning treatment and care. One of those was that healthcare professionals should have sufficient awareness, understanding and knowledge of CFS/ME. The noble Lord, Lord Clement-Jones, referred to that. The department's response was that it recognised that knowledge and
skills needed to be improved. I join the noble Lord, Lord Clement-Jones, in asking the Minister to say specifically what actions will underpin this part of the Government's response. How will the knowledge and skills be improved and over what timescale?The prevalence of CFS/ME was estimated in the report to be between 0.2 and 0.4 per cent. That means that most general practices will have several patients with the illness. Therefore, it is important that there is an acceleration of skills and knowledge. When do the Government believe that all general practices will be adequately equipped, based even on the current level of knowledge about the illness? Will it be this year, next year or when?
Hazel Blears, a health Minister, stated in a Written Answer in another place:
- "A useful way forward at a local level could be for clinicians and patients to develop clinical learning networks that will allow them to develop expertise".—[Official Report, Commons, 12/3/02; col. 1008W.]
The working group report dealt fairly extensively with the two therapeutic approaches about which most is known. We heard from the noble Countess, Lady Mar, of her doubts about one of those; that is, cognitive behavioural therapy. Putting those doubts aside for one moment, there are in practice few specialists. That means that those therapies are hard to obtain and I understand that waiting lists run to more than two years. The expertise base is even smaller for alternative therapies. Will the Minister say what the Government intend to do to increase the number of specialists and therapeutic options that are available?
The working group also said that sufficient tertiary level specialists should be available to advise and support primary and secondary care colleagues. Will the Minister say how many tertiary level specialists exist currently and whether they provide the basis of adequate support to primary and secondary care? And anticipating that that cannot be answered positively at this stage, will the Minister say what is to be done about this? The Government's response to the working group in this area was non-existent.
The working group stated that strategic health authorities should make provision for secondary and tertiary care based on an annual prevalence rate of approximately 4,000 cases per million. Based on our discussions at the Committee stage of the National Health Service Reform and Health Care Professions Bill about strategic health authorities, I rather doubt that those authorities will be making any provision themselves. It will no doubt be left to PCTs. We on these Benches have expressed considerable doubts about the readiness of PCTs for commissioning generally and have no confidence in highly specialised commissioning for an illness which is not even widely acknowledged to be an illness. Will the Minister say how that is to be done and whether he believes that PCTs will be up to the task?
Regardless of the technical aspects of commissioning, there will be a real issue about money, as the noble Lord, Lord Clement-Jones, has said. Conspicuous by its absence from the Government's response to the working party's report was any mention of money. It is apparent that extra funds will be required if the recommendations of the working group are to be implemented. The noble Lord, Lord Clement-Jones, referred to an overall cost to the economy of £4 billion. The figures I have seen suggest a cost of around £1 billion. However, whether it is £1 billion, £4 billion or something in between, it is a very large sum of money. Thus it is clear that moneys invested in research and treatment for CFS/ME should be cost-effective as well being desirable on health grounds.
Underlining what has already been asked by the noble Lord, Lord Clement-Jones, my final question for the Minister is this: how much will the Government invest in research, in education and training, in service provision, and over what time-scale? I hope that the Minister will not disappoint us because this is a very real health issue which will need positive action and funding from the Government if progress is to be made.
Lord Rea: My Lords, before the noble Baroness sits down, perhaps I may refer to a point she made earlier in her remarks. The noble Baroness said that when she contacted NHS Direct about myalgic encephalomyelitis, the representative responded by asking, "Do you mean, imagined myalgic encephalomyelitis?" That sounds like a rather derogatory and insulting response.
However, the condition displays no actual clinical or pathological signs of encephalomyelitis which would always be present when someone has a true diagnosis of the condition. That is why the term "chronic fatigue syndrome" is much preferred. I do not suggest in any way that the condition is not an entity; that it does not exist. We do not yet know what causes it, and there may indeed be multiple causes.
8.2 p.m.
The Parliamentary Under-Secretary of State, Department of Health (Lord Hunt of Kings Heath): My Lords, first I echo the words of other noble Lords in thanking the noble Countess, Lady Mar, for initiating this debate. Her speech was indeed hard-hitting, but I pay tribute to the way in which she has continued to raise issues relating to CFS/ME in your Lordships' House. I congratulate the noble Countess on giving us an opportunity to discuss in some detail the report of the independent working group and the Government's response to it.
In doing so, I should first acknowledge the tremendous work undertaken by the working group. I do not think that anyone should be under the misapprehension that the working group was faced with anything other than a very difficult task. It is right for me to pay tribute to the chairman, Professor Allen Hutchinson, Dr Timothy Chambers, chair of the children's group, and the deputy chair, Professor
Anthony Pinching. All the members of the group, from whatever background they came, made a great effort to accommodate a wide range of views and opinions, as expressed in the final report. I know that the work took longer than had been expected but I am convinced that the time taken by the group was well worth while. Although I fully accept that the report has not provided all the answers that noble Lords would have desired, it has moved the debate on considerably.In paying tribute to the working group, one has to recognise how distressing and debilitating this condition can be for individuals, their carers and their families. Of course, even if the actual illness is not in itself problem enough, as the noble Countess, Lady Mar, made abundantly clear—and as was made clear in the report—many patients find it very difficult to get the treatment and care they need to help them manage their illness and make a recovery. That is a double whammy, if you like. One's heart goes out to the many thousands of people who over the years have found that the health service has not been as supportive as it ought to have been.
That is why the independent working group gave such a high priority to harnessing the views of patients, parents, families and carers to underpin the guidance. The noble Lord, Lord Clement-Jones, raised the issue of patient and public involvement. He knows that we are in the middle of a fascinating debate about how the Government intend to improve public and patient involvement. However, in particular in relation to CFS/ME, I should like to highlight the two sounding board events held by the independent working group to enable patients to participate in the development of the report. These events were designed to capture some patient voices and to ensure that major stakeholders could identify issues that are pertinent to people who live with CFS/ME.
I accept the challenge that, as we move on and encourage the NHS to develop appropriate services, the principle of patient and relative partnership will be absolutely crucial at the local level. Although the noble Lord, Lord Clement-Jones, has reservations about some aspects of our proposed developments with regard to patient and public involvement, we believe that the particular value of patients forums will be in enabling those people who are experiencing services at the sharp end to be able to make a major input into policy and service development.
Voluntary organisations also contributed to the working group by providing material and sponsored surveys which have informed the report throughout. The group aimed to capture views from individuals with special interests or expertise and from a wider constituency, then to structure the material to reflect the range of opinion.
It is worth acknowledging that, while many thousands of people have felt let down by the system, some patients have had a positive experience and have
worked with health and social care professionals to manage their own care. The report contains one or two positive quotes. One patient said that,
- "a diagnosis of CFS was made and I was advised how to manage my energy".
- "My GP was brilliant. He said he did not know how to cure me, but we would work together to make me better".
We want everyone with CFS/ME to get the treatment and care they need, when they need it and where they need it. Like the patients quoted in the report, we want people with CFS/ME to be listened to when it comes to decisions about what type of treatment and care will best meet their individual needs.
I listened with a great deal of interest to the noble Countess when she referred to articles written in the British Medical Journal. The noble Baroness was right to point out that those articles represent the views of a very small number of doctors in relation to the totality of the medical profession in this country. It is important to underscore that. On behalf of the Government, I should like to make it absolutely clear that we endorse the view of the working group that this is a chronic illness, that health and social care professionals should recognise it as such and that the Government welcome the publication of the report as a start to the process of improving awareness and understanding of CFS/ME. I am happy to reiterate that to the noble Countess. We stand by the report.
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