HC Deb 06 February 2002 vol 379 cc304-12WH

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Mr. Tom Clarke (Coatbridge and Chryston)

I am very grateful to you for those words, Mr. Deputy Speaker and I am pleased to have obtained this debate on such an important subject. It gives us the opportunity to focus on an important milestone when dealing with the scourge of myalgic encephalopathy, or chronic fatigue syndrome. The report published this month, after painstaking activity and work, entitled "A Report of the CFS/ME Working Group: Report to the Chief Medical Officer of an Independent Working Group" is addressed to Professor Liam Donaldson. I am sure that we would all want to thank him for his considerable interest and contribution.

I hope to be brief in order to accommodate the contributions of my hon. Friends—especially my hon. Friend the Member for Great Yarmouth (Mr. Wright) who chairs the all-party group on myalgic encephalomyelitis with such distinction—and to give them the opportunity to make known their views on the report.

ME is an unfashionable cause—some people go as far as to say that there is no such thing. They claim that if it exists at all, it is a mild illness that only the middle class can get—it is all in the mind. People are told to pull themselves together, get a grip and face reality. We now know what reality is. ME does exist. Thanks to the Donaldson report, we are told Chronic fatigue syndrome (CFS/ME) is a genuine illness and imposes a substantial burden on the health of the UK population Much of the scepticism that has been so harmful to sufferers of ME stems from the 1980s, when a phrase to describe the illness popped out of thin air—yuppie flu. The report acknowledges what a disservice that was to ordinary men, women and children who succumbed to the illness. It dispenses brilliantly with those misunderstandings, disposes of them and gives us the response for which we have been waiting for far too long.

What is ME, or CFS as it is sometimes called? The term ME was coined in the 1950s following an outbreak 20 years earlier in the Royal Free hospital in London. The term CFS is a more recent invention. We now know that the illness has been around in one form or another for at least a century, possibly even longer. The report estimates that there are approximately 150,000 people in the United Kingdom with the illness. It is often, but not always, triggered by a viral infection. Labyrinthitis, an inner ear infection, is specifically cited in the report. The symptoms are often bewildering: total and overwhelming exhaustion; severe muscle pain; debilitating problems affecting concentration and short term memory; digestive difficulties; and, sometimes, intolerance to food, light, alcohol and even medication.

Contrary to myth, CFS/ME can affect anyone, regardless of their background, age, sex or ethnic origin-even children under five. How can children of that age imagine or invent such an illness, with all those symptoms? Those who have it most severely—about 25 per cent. of the total—cannot do even the most personal task without help.

I declare an interest in that I had the illness for 20 months in the early 1990s, but I was one of the lucky ones who made a full recovery. However, even those who have what might be described as a mild form of ME are in my opinion entitled to recognition and, indeed, a care package, which has hitherto not existed. Yet, as the report discloses, we invest virtually nothing in research into an incredibly destructive illness that varies in intensity among people. Are we therefore surprised that so little is known about the illness right across the board from patients to professionals in health care?

Following the Donaldson report, there can be no excuse for such indifference or indolence. In its own words, inaction due to ignorance or denial of the condition is not excusable. We can no longer tolerate circumstances in which specialists are few and far between and it can be virtually impossible to see a specialist because there are only a tiny handful in the country and those that exist are massively oversubscribed and often collapse under the burden. We are often no better further down the line. General practitioners are never given proper guidance. Some perform heroics, but others are openly hostile. Indeed, I know of one GP who sent a message to a patient that said "Stop being so nice to people and start digging the garden as I am doing", a view flatly contradicted in the report, which states: All clinical interventions carry a potential risk of harm, especially if applied incorrectly; for CFS/ME in particular, imposed, rigid programmes can be actively harmful. Much better, surely, is the report's recommendation that all management approaches should be done in full partnership with the patient. That also applies to diagnosis. GPs are encouraged to spot the illness early and to put in place a sensible plan for coping. Surely that is far better than what happens now, when many patients wait up to six months merely to be told that they are ill.

Should hon. Members have any doubt, I refer to the study undertaken by the charity Action for ME, "Severely Neglected". It surveyed almost 2,500 patients—the most ever—and revealed that a third waited more than a year and a half to be diagnosed, two out of three received no advice from a GP, and people were made worse by treatment and denied access to health care and benefits. It is not surprising that 50 per cent. of those interviewed in the survey said that they felt suicidal.

I welcome the positive and practical proposals in the report—early diagnosis and advice and much better treatment and care. It says that professionals should be properly trained and that the NHS—GPs and secondary and tertiary care—should be equipped to deal with the problems. The report strongly recommends proper research into all aspects of the illness to achieve a big breakthrough.

For the reasons that I have given, I shall conclude by saying that an enormous number of people have worked tremendously hard to get us to this point, not least Action for ME and its chief executive, Chris Clark. In an interview with Brian Dow in response to the Donaldson report, he said: I wish I could believe that every single sceptical doctor, nurse, therapist and member of the public will suddenly have their minds changed, but that's not going to be the case. What should and will happen though is that the day after publication, if a doctor uses the immortal words 'I don't believe in M.E.' the patient has the power to say 'I'm very sorry but the Chief Medical Officer says that it does exist and here's the evidence'. In that spirit, I commend the report to my colleagues.

1.11 pm
Mr. Anthony D. Wright (Great Yarmouth)

I congratulate my right hon. Friend the Member for Coatbridge and Chryston (Mr. Clarke) on securing this important debate. It is always difficult to cram all that needs to be said into the allotted half-hour, so I thank him for his generosity in allowing me to make a small contribution.

I believe that the most significant aspects of the report relate to improving diagnosis, treatment, care, research and health service planning. I and everyone else with an interest in the issue would welcome a clear statement today from my hon. Friend the Minister on the Government's plans for implementation in those areas.

Equally important is the question of diagnosis. There is, of course, no single diagnostic test to prove that a person has ME. Until now, it has simply been a question of eliminating other possibilities. However, as early diagnosis seems to have a direct link to the likelihood of recovery, that must be resolved as a priority. The study by Action for ME showed that a third of people took more than a year and a half to be diagnosed. Most thought that that had made a "huge difference" to the severity of their illness.

The Chief Medical Officer's report is very strong on that point. It states that a provisional diagnosis can be put in place after six weeks, with accompanying sensible advice on rest and activity. The diagnosis can then be confirmed if the patterns continue. That has been almost universally welcomed, not least because it may help to break the spiral of a patient becoming worse and having to pay more visits to the GP.

On treatment and care, the report made it clear that because of the lack of serious research, there is no magic pill that helps all people. None the less, much can be done to alleviate some symptoms. Moreover, for those at the less severe end of the scale, rehabilitation programmes involving pacing, graded activity and cognitive behaviour therapy can be beneficial. The report makes it clear that none of those are cures and the latter two in particular are not appropriate for all people. Care must be taken on an individual basis. The report notes that awareness and understanding of ME as a serious illness needs to be increased among the general public, schools, the media, employers, agencies and Departments.

All in all, the report's publication marks a long overdue watershed moment in the history of ME. However, what we do next is every bit as important, if not more so. I therefore have several questions about the Government response to the report. The Government stated that they would refer the issue of providing guidance to the National Institute for Clinical Excellence in due course. I hope that the Minister understands that we need to be clear on when that will be. I believe that NICE's own period for producing guidelines is two years.

Mr. Michael Weir (Angus)

I understand that the Donaldson report referred only to England and Wales. Perhaps the Minister will say if anything similar is planned for Scotland.

Mr. Wright

I believe that the issue will be debated in Scotland and I am sure that the Minister will answer the question. Will she tell the House when advice on diagnosis will be passed to GPs and if it will follow the outcome of deliberations by NICE? Does the Minister think that the UK charities' suggestion of implementing interim guidance on management is a good one, and if so, when will it be done?

Mr. Bob Blizzard (Waveney)

Does my hon. Friend agree that it is important that patients are fully involved in the urgent research called for in the working group report? It is important, too, to listen to support groups such as the Beccles and district ME support group in my constituency. I am sure that my hon. Friend joins me in praising and congratulating the new Norfolk and Suffolk CFS/ME service under the leadership of Dr. Terry Mitchell, who serves both our constituencies, for its pioneering work. We need to build on that work and ensure that it is carried out elsewhere in the country.

Mr. Wright

I have no hesitation in applauding the work done by charities, especially the local groups in Norfolk and Suffolk. It is a matter of postcode prescriptions; whether one gets the treatment depends on where one lives. Dr. Mitchell is a pioneer on the issue in the Yarmouth and Waveney area.

On health services, the report identifies grave deficits in primary, secondary and tertiary care, which urgently need to be plugged. We need to take action to ensure that the changes happen as soon as possible, so those who are most severely affected do not continue to receive the worst deal from the NHS. What assurances will the Minister give on the matter? Does she intend to implement specific funding for such services? If it is to be left entirely for primary care, we will be making a rod for our own backs and condemning patients to years of frustration.

What are the Government's intentions on research? For many sufferers, that is the area in which they are desperate for leadership. The York review, which was incorporated into the chief medical officer's report, highlighted the chronic lack of serious research. Indeed, only 43 studies worldwide met the York criteria. The report stated categorically that there should be a programme of research on almost all aspects of the illness.

The report is being forwarded to those responsible for developing the national service framework for chronic disease. That is welcome, but the outcome may be achieved only over a 10-year period starting in 2005. Given that the report indicates that the deficits identified, particularly in relation to the severely affected, need addressing urgently, does the Minr agree that we cannot afford to wait more than a decade for a clear national strategy to be put in place?

I am pleased that the matter was referred to the Medical Research Council with a request that it should convene an independent scientific advisory group and produce a broad strategy by the end of February. To date, the severely affected have been excluded from serious research and that needs correcting. It is essential that all aspects of the illness are covered. It will go down very badly indeed if research that may help those who are more severely affected is ignored. More work is needed in immunology, virology and endocrinology, among other areas.

At a conservative estimate, ME costs the country £4 billion a year in lost earnings and benefit payments. Does the Minister support the concept of ring-fenced money for research and, if so, what amount does she consider appropriate?

In essence, the chief medical officer said that from 11 January people with ME are entitled to the same support as those with other long-term, chronic illnesses, which is what sufferers and patient groups have been saying for years. They do not want special treatment, just parity with those who have other serious illnesses.

I welcome the recommendation that there should be public awareness campaigns to highlight the seriousness of the illness and I hope the Minister will tell us whether she intends to implement that recommendation. The report also recommends that the education and training of doctors, nurses and other healthcare professionals should include CFS/ME and that there should be specific postgraduate education and training in the subject. What assurances can the Minister give in that respect? For example, can she say when that will happen? Finally, can the Minister say how the recommendations on children with ME will be implemented? The impact of such an illness on a young child and their family can be devastating.

As hon. Members know, ME has suffered a curious history, and those who have it have had to face a peculiar double burden over the years. They must cope with an illness that to a great extent destroys their lives and suffer the prejudice and ignorance that has followed the illness around. It is hard for any of us to imagine what it must be like to endure the effects of a serious condition and a constant barrage of scepticism, cynicism and disbelief from those who should have helped them. Since I co-founded the all-party group on CFS/ME in 1998, I have heard from many sufferers whom GPs, health professionals and others have disbelieved. Although those sufferers were lucky enough to receive a positive diagnosis, they had to wait for years before they got to see an ME specialist.

Many more sufferers have experienced protracted battles with their benefits agencies, as they tried to receive the benefits to which they are clearly entitled. Further problems have been experienced at the hands of private health insurance companies, social service agencies and unsympathetic employers. The response to the report has been overwhelmingly positive. People are genuinely relieved that at last the Government are taking their illness seriously and that the problems that they face may finally begin to be addressed. Thousands of people saw a bleak future stretching before them, in which their quality of life became gradually worse. Those people can now have a sense of hope and begin to believe that one day they will be better. It is a huge breakthrough to be able to say at last that we have official recognition that ME exists and is a serious condition.

I commend the Government for their work in getting this far. They have seriously tried to grapple with the issue and, as a result, have made important progress. However, this must be viewed as the start of the process, not its conclusion, and we must act with an urgency that has been absent so far. People with ME want that, and after years of neglect, that is the least that they deserve.

1.21 pm
The Minister of State, Department of Health (Jacqui Smith)

I congratulate my right hon. Friend the Member for Coatbridge and Chryston (Mr. Clarke) on securing the debate. I also thank my hon. Friend the Member for Great Yarmouth (Mr. Wright) for his contribution, and my hon. Friend the Member for Waveney (Mr. Blizzard) for his intervention. I welcome the debate, not least because it gives the Government the opportunity to state their response to the independent working group's report on CFS/ME. A group is also being established in Scotland to consider how best to take the report forward.

I want to start by recognising how distressing and debilitating the condition can be for individuals, their carers and their families. If the illness is not enough of a problem in itself, as my hon. Friend the Member for Great Yarmouth pointed out, the report makes it clear that some patients have found it difficult to get the treatment and care that they need to help them manage their illness and make a recovery. That is why the independent working group gave high priority to harnessing the views of patients, parents, families and carers to underpin the guidance. Two sounding board events were held to enable patients to participate in the development of the report, and 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. Voluntary organisations also contributed to the independent working group by providing material and sponsored surveys that informed the report throughout.

Some patients have had a positive experience and have worked with health and social care professionals to manage their own care. The report gave the example of a patient who said that a diagnosis of CFS was made and I was advised how to manage my energy". Another said: My GP was brilliant. He said he didn't know how to cure me, but we would work together to make me better. We want everyone with CFS/ME to receive the treatment and care that they need, when and where they need them. Like the patients quoted in the report, we want those with CFS/ME at least to be listened to when decisions are being made about the type of treatment and care that would best meet their individual needs. I want to make it clear that we fully endorse the view of the independent working group that CFS/ME is a chronic illness. Health and social care professionals should recognise it as such, and the Government welcome the publication of the report as the start of the process of improving awareness and understanding of CFS/ME.

I acknowledge that the working group faced a difficult task. Widespread uncertainty surrounds the condition, along with disbelief and controversy about its existence and disagreement about the best way to treat it. I should like to take this opportunity to thank the members of the working groups, including the children's and reference groups, who carried out such a difficult and complex task. I am confident that the report will act as a catalyst for improving care and treatment for people with the debilitating illness.

My right hon. and hon. Friends made an important point about the contribution that patients can and should make in determining the best way forward. Patients with a chronic illness have a wealth of experience in managing their condition, and the Government recognise that. The report entitled "The Expert Patient—a new approach to chronic disease management for the 21st century" sets out how the national health service will empower those with long-term illnesses to become key decision makers in their own care, and that is relevant to this subject.

Key challenges face clinicians who care for people with CFS/ME. First, as my right hon. Friend the Member for Coatbridge and Chryston outlined, there are no agreed diagnostic criteria. Diagnosis is often made by eliminating other conditions through a series oftests, and although it is agreed that overwhelming fatigue is one symptom that characterises CFS/ME, debate continues about which other factors should be taken into account when making the diagnosis. Secondly, we do not know the cause of CFS/ME, although there are many theories. Thirdly, no one form of treatment suits every patient, and it is for doctors, in partnership with their patients, to decide how to relieve the wide variety of symptoms that individuals can experience. Fourthly, we are aware that there is controversy about some approaches used for managing CFS/ME.

We must ask all the stakeholders to work together and establish the treatments, or combination of treatments, that will help patients to get better. One possible way forward would be to develop clinical learning networks that allow clinicians and patients to develop expertise. That is in line with the approach of using patients and users to develop expertise. Although most people receive treatment in the primary care sector, I recognise the concerns of my right hon. and hon. Friends about the tertiary and secondary care sectors, and there is potential to develop service networks between tertiary and secondary care. That is another matter that the Government must explore with strategic health authorities. It would improve access to the skills, experience and resources of secondary and tertiary centres, and incorporate the principles of stepped care.

Services for people with CFS/ME have been too patchy. We expect that the report and any further research that may be commissioned will help health professionals feel more confident about caring for patients. The fact that the report has been published should help to increase awareness of CFS/ME, throughout both the medical profession and the public. The report is not intended to provide a comprehensive clinical guideline and has not been developed as such, and a referral to the National Institute for Clinical Excellence to provide guidance on management and treatment is being considered. Thought must be given to what is the most appropriate clinical tool for helping patients with the condition. It may be that an audit, referral protocol or guideline best meets the needs of the patients with CFS/ME, and those matters must be discussed in some detail with NICE. It would be better to consider all the evidence rather than to rush in and develop something that is inappropriate.

As was outlined, we will ensure that the external reference groups who are developing the national service framework for both long-term conditions and children's services consider the report and its recommendations for improving treatment and care. Although CFS/ME may not be examined as a specific condition in those NSFs, they will address some generic issues that affect the management of illness in childhood and adolescence and long-term medical conditions in adults. NSFs set out standards for treatment and care and provide support to health and social care professionals to deliver high quality services. Although they may span over 10 years, they do not take 10 years to make an impact.

On research, it is clear from what I said about the challenges facing clinicians that we agree with the working group that the evidence base is poor. We fully support the need for more research on a wide range of aspects of CFS/ME and have asked the Medical Research Council to develop a broad strategy for advancing biomedical and health services research. To do this, the MRC will appoint an independent scientific advisory group. The terms of reference and timetable will be agreed in the spring of 2002. However, I am sure that my hon. Friend is aware that it is a long-standing, important principle of successive Governments not to prescribe to—

Mr. Deputy Speaker (Mr. Nicholas Winterton)

Order. I must tell the Minister that time is up. I regret that I must cut off her reply. We now move on to the final debate, initiated by the hon. Member for Twickenham (Dr. Cable).