Myalgic Encephalomyelitis

Debate between Paul Burstow and Mike Hancock

Wednesday 2nd February 2011 Westminster Hall

[The Minister of State, Department of Health (Paul Burstow)]

It is a pleasure to serve under your chairmanship, Mr Hancock, with the coincidence of speaker and respondent in the debate.

I congratulate my hon. Friend the Member for Redcar (Ian Swales) on securing the debate, and thank him and other hon. Members for their contributions. This is not the first time the House has debated these issues. My hon. Friend the Member for Mid Dorset and North Poole (Annette Brooke) raised them—as have others, including me—when in opposition. My local ME support group has been encouraging, and what it has taught me has been an invaluable part of how an MP gets an insight into a condition they might not personally suffer.

I realise that this is a difficult and controversial subject, and I can understand why feelings run high. I appreciate the difficult and desperate struggles that people often face to achieve clinical recognition and relief from the condition, and a sense of hope that there is a direction of travel toward understanding the underlying causes, and eventually getting a cure.

I will ensure that the comments of my hon. Friend the Member for Redcar about benefits are passed on to ministerial colleagues at the Department for Work and Pensions. Although he made some important points in that regard, I will not address them as they are above my pay grade—or certainly outside it.

The basic challenge is that we do not know with any confidence what causes the distressing symptoms—indeed, the condition itself—that my hon. Friend so clearly described. That is why he is right, as is the hon. Member for Stockton South (James Wharton), to highlight the need for research. On my hon. Friend’s point about defining the condition, until we have a strong clinical evidence base, we have to keep an open mind about whether this is one condition or a number of conditions with similar symptoms but different causes. The Department does follow, and will continue to follow for the time being, the World Health Organisation convention in how we describe and refer to the condition—that is, to call it CFS/ME. That is the WHO definition; it is not a specific term that the Department of Health has alighted on and no one else uses. It is important that that be understood.

On present understanding, that definition best captures the spectrum of symptoms and effects that characterise the illness. As yet, there is no cure nor any consistently effective treatment for the condition. As my hon. Friend rightly said, we do not even have a standard diagnostic test to confirm the condition. Diagnosis is possible only through excluding other illnesses with similar symptoms. There is, however, strong international consensus that CFS/ME is a chronic and disabling neurological illness. I want to stress that it is a neurological illness; it is not a mental health problem. I know that that suggestion causes great concern—and, arguably, offence—for many sufferers who have campaigned vociferously against it. The strength of many people’s reaction to that label says a lot about the stigma that is still attached to mental illness, and about the attitudes of health professionals towards it. We seek to tackle those two problems in the mental health strategy that the Government have published today.

Although CFS/ME has no psychological foundation, that does not mean that we cannot gain lessons and insights from cognitive behavioural therapy, and that where appropriate, it should not be used as part of a treatment plan, just as it is for many other long-term health conditions. The NICE guidelines, to which my hon. Friend has referred, include counselling and graded exercise as possible treatment options. Let me emphasise the words “possible” and “guidelines.” Neither of those things is mandated, but they could form part of a conversation between the clinician and an individual about the appropriate, personalised approach to their situation.

The guidelines seek to help a person to manage their symptoms as much as possible. In lieu of any clinical cure, that is about social recovery and helping people to manage their symptoms, be clear about their goals and define their own recovery, rather than simply prescribing a clinical treatment. We know that the treatment in the guidelines helps some patients but, as my hon. Friend has said, for many people it does not help at all, and some people find it offensive. The obvious point—I will return to this in a moment—is that a doctor needs to work with the patient to find the most appropriate way forward. That is why personalisation is at the heart of our general approach to long-term conditions, which is critical in this debate.

With no cure, research is naturally a source of hope for those with the condition, and my hon. Friend has made a powerful and compelling case for further investment. However, it is not as simple as the Government saying, “We will the end but we are not clear about the means when it comes to research,” and it is not a case of allocating a research pot to a specific disease type. Down that road lies poor research, not discovery and real change.

We are protecting health research budgets overall. That decision was taken from the centre and made by the Chancellor in the spending review. However, decisions about how money is allocated remain—rightly—with the Medical Research Council and other funding bodies, not with a Minister behind a desk in Whitehall. That must be the case with other funding bodies.

The MRC has nominated CFS/ME as a strategic priority area for several years. Indeed, it has set up an expert group to focus specifically on the condition in a way that did not happen previously. The group comprises leading academics from across the country, as well as representatives from several organisations that have direct experience and interest in the condition. They are working together to improve the capacity and opportunities for research in the area.

My hon. Friend has acknowledged as good news the fact that the MRC is making up to £1.5 million available to support research into the causes of CFS/ME, which is welcome. Decisions on funding will continue to be made purely on the quality of research funding received. Critically, as in any area where we need more research, that sends a clear signal that the money is there and that there is a willingness to commit funds to research. The gauntlet has been thrown down to the research community to rise to the challenge and ensure that there are enough bids of sufficient quality to draw in that funding.

The funding call will focus on six priority areas identified by the expert group— autonomic dysfunction, cognitive symptoms, fatigue, immune problems, pain management and sleep disorders. I will ensure that the MRC and other research bodies look at this debate and see the additional points that have been made about biomedical research, so that that can be taken into account by the expert groups.

The call will also seek to build up research capacity, because one of the challenges has been attracting more researchers into the field. The expert group can only achieve so much on its own and, if I may be blunt, there has been a history of fractiousness and fragmentation between different groups with an interest in the area. Often, it is easy to agree on what we do not like, but harder to agree on the common ground and what the course of action should be to change things. I understand the heightened emotions that are often articulated by constituents who suffer from the condition, and I have spoken about that to people in my surgery. However, we will not achieve anything if organisations do not work together and engage with one another to find common ground and build alliances.

All patient groups need to look outwards and be positive about how they can work with the NHS, the Department, medical researchers and each other to influence change. One big challenge is to get more researchers interested in that area of work, but we are sometimes in danger of shooting ourselves in the foot by failing to show a united front.

Everyone with a stake in this area has an interest in ensuring that a constructive and supportive environment exists for research—that is key. Division and discord will not accelerate the pace of change, and I hope that the reconstituted all-party group on Myalgic Encephalomyelitis will play its part in facing that challenge and driving us forward.

My hon. Friend has mentioned the XMRV retrovirus, and I want to underline his point. It is an area in which research is not conclusive and where further research is being pursued to establish whether there is a link. At this time, however, there is no robust evidence to suggest such a link. Research can provide hope for the future, but we need to do more now to improve care for people with the condition.

The NHS does not always get it right for people with long-term conditions in general, let alone those with CFS/ME. The problems faced by people with CFS/ME are consistent with those caused by other conditions. Care is fragmented rather than integrated, and people struggle to be referred to a specialist in a timely and appropriate way. Most importantly, there is a sense that health professionals see the condition, rather than the person in front of them. Although this debate is about how we describe CFS/ME, it taps into some basic ideas. All too often, the label ends up mattering more than the person. Health professionals decide how people are treated and to which services they should be referred, but that should not be the most important determinate. We want the patient and doctor to work in partnership in the consulting room, meeting as two experts—one on the person, and one on the appropriate ways to support and treat them.

The greater use of personalisation and care planning can play a part, and that must be an explicit part of the Government’s plans for the NHS. However, it goes deeper than that, because it is really about patients being given the power of self-determination. The idea of, “No decision about me, without me,” should be a governing principle of the NHS. People should be asked to set their own personal goals and work together with professionals to achieve them. Everybody is different, and we must ensure that the care they receive reflects that.

My hon. Friend did not mention commissioning, but it is important to touch on that issue. To achieve these changes and get the right services and specialists, we must make sure that support is available. I know from my own constituency that excellent work is done in specialist CFS/ME clinics to integrate care for patients. Nevertheless, there is patchiness around the country that compromises the quality of treatment and reduces the options available. That is why we must improve commissioning, and GP consortia can help us involve patients much more in how local services are shaped.

I stress that the future of the NHS is local, not national. It is about local NHS and local GP consortia working with local patients’ groups and making decisions based on a clear understanding of their needs and local needs. To commission effectively, GPs must understand the needs of patients with long-term conditions.

I hope that the Neurological Alliance can play an important role in that. Nationally and regionally, it has support networks that can make a huge difference by levering change in the commissioning of neurological services. I urge groups with an interest in CFS/ME to engage with the Neurological Alliance, use it, work through it and form connections with it, as a way of shaping and changing services in the future.

In conclusion, there are real opportunities ahead, and a real chance to address some of the frustrations and misery experienced by people with this condition. My message, and that of the Department of Health, is that there is an open invitation for representative groups to get involved in shaping the future of the NHS. We want the Neurological Alliance to be a key source of advice and support for GP consortia and health and well-being boards at local level. I am sure that the new NHS commissioning board will be keen to build links with the alliance in forming national policy.

The urgency exists, and the additional commitment to drive long-term conditions to the top of the agenda is one of the Government’s ambitions. I thank my hon. Friend for raising these issues, and we will continue to work together to make sure that we improve the lot of his constituents and those of other hon. Members.

[Mr Mike Hancock (in the Chair)]

Thank you, Mr Burstow. I ask those hon. Members who are not involved in the next debate to leave the Chamber quietly and speedily.