Myalgic Encephalopathy

HC Deb 12 June 2002 vol 386 cc973-80

Motion made, and Question proposed, That this House do now adjourn.—[Mr. Jim Murphy.]

10.28 pm

Mr. John Bercow (Buckingham)

It is my pleasure and privilege to speak tonight on the subject of myalgic encephalopathy. I do so with enthusiasm and commitment, the more so because I know that the debate will be answered by the new Under-Secretary of State for Health, the hon. Member for Tottenham (Mr. Lammy). He has had a meteoric but thoroughly deserved rise to office. I wish him well in fulfilling his responsibilities, and in particular I look forward to what he has to say in response to my speech.

In the House since 1997, interest in ME, or chronic fatigue syndrome, has been manifested in no fewer than 116 written and oral parliamentary questions; a number of early-day motions—three, if I remember correctly, of which the most popular was the one tabled by the hon. Member for Brighton, Kemptown (Dr. Turner) in November 1997, which attracted no fewer than 164 signatures; and several Adjournment debates. Of the latter, two in particular stick in my mind. The first was initiated by the hon. Member for Great Yarmouth (Mr. Wright), whom I am pleased to see in his place tonight. The chairman of the all-party ME group, he has devoted himself to the issue with remarkable results, and his conscientiousness has earned him the justified respect of hon. Members on both sides of the House. The other debate was introduced by the right hon. Member for Coatbridge and Chryston (Mr. Clarke), who is not able to be with us tonight; he spoke on 6 February this year, to telling effect.

My motivation is straightforward: the ME Association, which is one of at least six such organisations and does pioneering and appreciated work in the field, recently moved its headquarters from Essex to my Buckingham constituency—a thoroughly judicious choice of location. Its offices are on the Buckingham industrial park. I said that I wanted to support the association in its work, and I meant it. I pay tribute to the efforts of its chairman, Ian Franklin, its new chief executive, Val Hockey, its public relations and communications manager, Tony Britton, and the excellent medical adviser to the association, Dr. Charles Shepherd.

There has been a long-standing argument about the cause of ME or chronic fatigue syndrome, but about its appalling symptoms and consequences there can be no doubt. Due not least to the work of the hon. Member for Great Yarmouth, it is now, I am pleased and relieved to be able to say, a clinically diagnosed condition. It is severe and potentially disabling, resulting in muscle and joint pain, sleep disorder, sore throat and enlarged glands, and loss of balance, concentration and memory; it can cause intolerance of food, alcohol and even light. The House and the wider public must understand that ME sufferers experience sheer exhaustion and excruciating pain. Those are often the daily endurance and harrowing ordeals of sufferers, who can be afflicted by the illness at any time of their lives. A quarter of ME sufferers suffer depression as a result of their affliction.

Mr. Laurence Robertson (Tewkesbury)

My wife suffers from ME. In addition to the crippling illness and symptoms that my hon. Friend has graphically described, one of the problems that my wife faces is that it is not understood that ME is a disease that often affects highly capable and very active people. I am sure she would want me to emphasise that to the House tonight.

Mr. Bercow

My hon. Friend is absolutely right—ME can strike someone at any time of their life and its effects can be variable and unpredictable. People can be well one day, and the next day be incapable of performing the most personal and simple task. I am grateful to my hon. Friend for making that point.

It is estimated that there are about 4,000 cases of ME per million of the population. The Effective Health Care bulletin recently speculated, with some authority, that ME sufferers comprise between 0.4 and 2.6 per cent. of the UK population. Millions of days are lost to ME in the workplace each year. The monetary impact is estimated to be about £4 billion. A 1997 study relating to schoolchildren found that ME was the single most common cause of absence from school.

However, there have been good developments. The establishment of the working group on chronic fatigue syndrome or ME was one such positive development. Set up by the Department of Health in late 1998 and chaired by Professor Allen Hutchinson, director of public health at the school of health and related research at Sheffield university, the working group was given important duties and has discharged them to admirable effect. The working group's terms of reference obliged it to review management and practice in the field of…ME with the aim of providing best practice guidance for professionals, patients and carers to improve the quality of care and treatment for people with…ME. The group produced its findings on 11 January this year in relation to the diagnosis of the disease, its management and its treatment. There were several conclusions, with which the Minister will be broadly familiar. It was concluded that health care professionals should recognise the chronic character of the disease and co-operate with affected parties. Early diagnosis, instead of a third of people having to wait 18 months or more to be diagnosed, is viewed as a priority. There is a crucial imperative for clinical evaluation and follow-up, preferably by multidisciplinary teams. The quality of support from GPs in co-ordinating strategies and then, where necessary, making appropriate referrals to specialists must be part of the mix.

The focus on domiciliary services should not be ignored either. There is a role for therapeutic strategies. Some of them—cognitive behaviour therapy and graded exercise—have come to be extremely controversial. That is why many experts think that there should be a new emphasis on pacing, which will require a commitment from Government and other agencies. There is a role for patients in the management and treatment of their condition. There is an overriding need, on which everybody, from whatever side of the argument, agrees, for more research, not least into the physical causes of the affliction. In relation to children, it is thought that care is best co-ordinated by an appropriate specialist—usually a paediatrician.

I think it is a positive development that that work has been done and that we now have the endorsement of the chief medical officer, Sir Liam Donaldson, for the proposition that this is a recognised disease. The days in which it was pejoratively and offensively dismissed as yuppie flu, and as something whose resolution required people simply to get their act together, are rapidly being consigned to the dustbin of history.

I hope, however, that the Minister will understand that I want to put a number of particular questions to him. I do so making it absolutely clear that this matter is not a party political football as far as I am concerned. The Government have done considerable good work on this subject, so I am not cavilling at them, but performing the proper role of a constituency Member of Parliament as well as an Opposition Member in seeking to encourage still greater efforts from the Administration.

Who is now on the scientific advisory panel established by the Medical Research Council? The chief medical officer and the Government want the MRC to have such an independent panel and to produce a strategy. I think it was originally expected that that strategy would be produced by the end of February. Later, in debates both in the other place and here, it was suggested that we would hear further from the MRC in spring this year. We are now, even by the most elastic definition, into the summer, and a good deal that we had expected has not yet been forthcoming.

What patient involvement will there be in the work of the MRC? When will its biomedical and health services research strategy be finalised, announced and started? Does the Minister agree with me—and, I suspect, other hon. Members in all parts of the House—that the matter is pressing because too little is known about the aetiology and pathogenesis of ME? What use are the Government making of the ME Association's booklet "ME/CFS/PVFS: An Exploration of the Key Clinical Issues", which is authoritative and is designed to be useful to them in communicating to all the agencies, including general practitioners, good and effective practice?

What assessment has the Minister made of the levels of primary, secondary and tertiary care, and what plans does he have, on the strength of his few days in his important post, for their improvement? In the light of the fact that another Under-Secretary of State for Health, the hon. Member for Salford (Ms Blears), declared at column 1008W on 12 March this year that there was merit in the development of clinical learning networks at local level, can he advise the House whether there has been any progress on that subject? Is it his judgment that such work should be undertaken before, after or concurrently with the formulation of the MRC strategy?

Has the incapacity benefit handbook for medical service doctors been changed? The Minister will know—if he does not, that is excusable and he will soon be informed about the matter—that there is great anxiety that, in the past, not recognising the disease meant unfairness for sufferers who tried to get the benefits to which most of us now believe they are entitled. Has the handbook been revised? Has the changed decision, the new attitude and the reformed culture been communicated to the people who determine whether sufferers get that to which they are entitled? Is the Minister satisfied that people are getting what they are due?

Mr. Russell Brown (Dumfries)

I congratulate the hon. Gentleman on securing the Adjournment debate. Despite the chief medical officer's deliberations and findings, does not the hon. Gentleman believe that great problems remain locally because some GPs continue to fail to recognise ME as an illness?

Mr. Bercow

I do. I say in no frivolous spirit that I was guilty—I frequently am—of seriously understating my case. I brought a delicacy of touch and natural kindness to bear in my remarks. I should have stated more bluntly that the Government should not only provide advice and communicate the new culture to GPs but put their foot to the backsides of those who have consistently misunderstood and displayed insensitivity towards people suffering badly at a difficult time in their lives. I am grateful to the hon. Member for Dumfries (Mr. Brown), whose point of view on the subject I share. Much remains to be done.

Does the Minister acknowledge that the ME Association is playing its part through funding a major study by Dr. Derek Pheby, director of applied epidemiology at the university of the West of England, under the auspices of the Ramsay Research Fund? It is designed to consider factors that might explain ME that is so chronic that victims become housebound or even bed-bound.

Will the Minister visit the information centre that the ME Association is developing in my constituency? I do not know how he can resist such a gracious entreaty only days after his appointment. I should be delighted to act as host. He knows from my remarks that the invitation is made in a non-partisan spirit. The issue is too big for political games. I should be delighted to welcome him if his busy schedule permits him to make such a visit at some stage. I know how pleased the ME Association would be.

Sir Liam Donaldson accepted the conclusions of the working group report on the subject without exception. They represented a milestone. Genuine progress has been made and there is no time to let up. We must not hold back; we need to consolidate and build on the progress. The evil of chronic fatigue syndrome must not be compounded, through errors of commission or omission, by chronic delay syndrome.

I am pleased to encourage the Minister, who well deserved his promotion as I said earlier, in the work that must follow. I look forward enthusiastically to his reply.

10.43 pm

The Parliamentary Under-Secretary of State for Health (Mr. David Lammy)

I am grateful to the hon. Member for Buckingham (Mr. Bercow) for his remarks and I congratulate him on securing the Adjournment debate. It is my first Adjournment debate as a Minister and I am pleased that it is on such an important subject as ME and chronic fatigue syndrome.

The hon. Gentleman mentioned several detailed matters and he will forgive me if I reply to some of his substantive points in writing. However, I hope that most of my comments will tackle the important issues that he raised.

I welcome the debate, not least because it provides an opportunity for us to state clearly our policy on chronic fatigue syndrome and ME more generally. I want to begin by acknowledging how distressing and debilitating the condition can be for individuals, their carers and their families. The hon. Gentleman was quite right to illustrate how debilitating this condition can be for individuals, and the hon. Member for Tewkesbury (Mr. Robertson) described very clearly the effects of the disease on his wife.

In January, an independent working group reported on ME. It is quite clear from the report that some patients have found it very difficult to get the treatment and care they need to help them to manage their illness and to make a recovery. We now want to move to a situation in which everyone with ME gets the treatment and care that they need, when and where they need it. I know from my own constituency that not only patients but the voluntary organisations that serve them are anxious that the momentum created by the publication of the independent working group's report should not be lost. I would like to assure hon. Members that we are aware of these anxieties, and I hope to address them in my speech.

It is fair to say that this is a controversial area, and that many in the field have different views on the nature of this very debilitating complaint. However, harnessing the views of patients, parents, families and carers to underpin the guidance was afforded high priority by the working group. The group aimed to capture views from individuals with special interests or expertise, and from a wider constituency, and to structure that material to reflect the range of opinion.

On the basis of that opinion, I want to make it absolutely clear that the Government endorse the view of the working group that this is a chronic illness. Health and social care professionals should recognise it as such. We welcome the publication of the report as the start of a process of improving awareness and understanding of ME. I acknowledge that the working group was faced with a difficult task. There is widespread uncertainty surrounding this condition, along with disbelief and controversy about its existence, and disagreement about the best way to treat it.

Four key challenges face clinicians caring for people with ME. First, there are no agreed diagnostic criteria. Diagnosis is often made by eliminating other conditions through a series of tests. There is agreement, however, that overwhelming fatigue is one symptom that characterises ME. There is a continuing debate about which other factors should be taken into account when making a diagnosis.

Secondly, we do not currently know the cause of ME, although there are many theories about that. Research has demonstrated immune, musculoskeletal and neurological abnormalities, and shown that physical, psychological and other factors are interrelated and all play a role. Thirdly, there is no one form of treatment to suit every patient, but treatment to relieve the wide variety of symptoms that individuals can experience is a matter for individual doctors to decide in consultation with their patients.

Finally, we are aware that there is controversy about some of the approaches used for managing ME. It is clear that the task ahead is to ask all the stakeholders in this field to work together to establish what treatment, or combination of treatments, will best help patients to get better, or at least relieve their symptoms.

The potential to develop service networks between the various stages of care—tertiary, secondary and primary—alongside primary care trusts and strategic health authorities is also important. This would improve access to the skills, experience and resources of secondary and tertiary centres, and incorporate the principles of shared care.

The report was not intended to be a comprehensive clinical guideline, and has not been developed as such. A referral to the National Institute for Clinical Excellence to provide guidance on management and treatment is being considered. Thought needs to be given to what is the most appropriate clinical tool for helping patients with this condition.

An audit, a referral protocol or a guideline might best meets the needs of patients with ME. These matters need to be discussed in some detail with the national institute. It would be better to consider all the evidence, rather than to rush in and create a guideline that may turn out to be wrong in the short term.

Mr. Anthony D. Wright (Great Yarmouth)

I take on board the point that the Minister has just made about referral to NICE. Is he aware that such a referral sometimes takes up to two years? The length of time that it sometimes takes to come to the working group is too long. We need to speed up the process. Bearing in mind the seriousness of the issue, will he give a commitment to consider that problem, and to try to deal with it as a matter of urgency?

Mr. Lammy

As a new Minister, I shall of course give a commitment to consider that issue. This is a complicated area. The report is substantial and makes serious recommendations. The consultation with NICE is being considered at the moment, and I hope that in due course I can come back to my hon. Friend with some conclusions about where we are at now.

We will also ensure that the external reference groups that will develop the two national service frameworks for children's services and adults with long-term conditions consider this report and its recommendations for improving treatment and care.

Within those frameworks, ME may not be considered as a specific condition. However, the NSFs will address some of the generic issues affecting the management of illness in childhood and adolescence and long-term medical conditions in adults. NSFs set standards for treatment and care, and support health and social care professionals in the delivery of high quality services.

I want to address some of the points that the hon. Member for Buckingham raised. He referred to the Medical Research Council. I understand that earlier today senior members of the MRC appeared before the all-party parliamentary group on ME. They described the process that the MRC is using to develop a research strategy for ME.

Hon. Members will recall that, following the publication of the independent working party report on ME, the Department of Health asked the MRC to develop a broad strategy for advancing biomedical and health services research on chronic fatigue syndrome and ME. The MRC has now assembled a small group to develop this research strategy. The group comprises individuals who are not active in the CFS field but have the requisite scientific expertise. They will be joined by lay members drawn from the MRC consumer liaison group and others to take this issue forward.

The proposed terms of reference for the group are to consider the report of the working party on ME, including its recommendations for research; to consider other recent reviews—the hon. Gentleman referred to one—of the current knowledge and understanding of ME; to take account of patient and lay perspectives; to recommend a research strategy to advance understanding of the epidemiology and biology of ME; and in the light of current knowledge to suggest what areas of further research are needed with regard to possible treatments.

I understand that the MRC hopes to conclude the process by the end of the year, but it recognises that the consultation steps may require slightly more time than previously anticipated. The MRC considers it vital that the process is not rushed. I can provide the hon. Gentleman with a list of the membership of that group if he so wishes.

The hon. Gentleman also raised the issue of benefits for ME sufferers, and I realise that that is a sensitive area. The Department for Work and Pensions recognises that ME is a debilitating illness. However, entitlement to benefit is dependent not on claimants having any particular diagnosis, but on their care and mobility needs in the case of disability living allowance or on the illness's effect on their ability to perform prescribed work-related functions in their assessment.

Mr. Laurence Robertson

May I stress that ME can lead to a patient being unable to walk?

Mr. Lammy

I am sympathetic, and assessments are made relating to such factors as mobility. The hon. Gentleman may be aware, however—I know this from the report, which I have with me and which I read at some length in the Library earlier today—that there is a spectrum of diagnosis. It is therefore right for a proper benefit analysis to be made, and for full account to be taken of the variety of debilitating effects that the disease can have.

Clinicians face challenges, and we agree that the working group has provided an evidence base from which to start. We fully support the need for more research on a wide range of aspects of ME, and we have asked the Medical Research Council to develop a strategy; I have mentioned the terms of reference. I am sure that the hon. Gentleman is aware of a long-standing and important principle of successive Governments—that Governments should not prescribe the details of what research councils should do. The Department is considering the benefit aspects in depth, but benefit will rather depend on the spectrum of complaints that an individual may have.

Mr. Bercow

I understand the Minister's point of view, but does he accept that, historically, the bias of research projects has tended to be towards psychiatric explanations of the disease rather than its physical causes?

Mr. Lammy

I think it would be wrong for me to comment on the science of what is a complex disease. I am not a physician. We have a working report, which is being studied.

As I have said, there are many views on this complex complaint. What is important is that the Government take it seriously, that clinicians, general practitioners, primary care trusts and strategic health authorities—among others—take it seriously, and that consultation takes place with NICE. I hope to return to the hon. Gentleman in due course with news of that. Moreover, the Medical Research Council is engaged in a strategic study of the issues.

The motion having been made after Ten o'clock, and the debate having continued for half an hour, MADAM DEPUTY SPEAKER adjourned the House without Question put, pursuant to the Standing Order.

Adjourned at two minutes to Eleven o'clock.