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Mr. Bercow: I do. I say in no frivolous spirit that I was guiltyI frequently amof 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.
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
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 caretertiary, secondary and primaryalongside primary care trusts and strategic health authorities is also important. This would improve access
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 reviewsthe hon. Gentleman referred to oneof 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.