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Lord Turnberg: My Lords, I wanted only to say that I am in entire agreement, and so is Dr Wessely. There is a physical component, and it would be nice to get a grip on it.
Lord Addington: My Lords, it is nice to know that I was not as lost as I thought.
The fact remains that, if treatment is going on, we should be very sure that we do not say to people that we are just dealing with a perceived or psychological disturbance. I believe that this is at the heart of the noble Countess's criticism. It is a perfectly normal side-effect for someone to have depression because he cannot move or function in his job. That is all that it is: a side-effect. Those with disabilities and debilitating illnesses probably have more to get depressed about than others. It is natural. It is in that secondary light—I hope that the Minister will confirm this—that treatment should be offered, not as the primary mover. That is a key consideration.
Will the Minister give us some assurance that children who are faced with the condition will be given guidance that means that they are not placed under extra stress? From the limited reading and research that I have done on the subject, stressful situations and the inability to handle them seems to make the condition worse. Every effort must be made to reduce that risk. If that means that children must be taught at home, that must be done. If it means that they must be taught by distance learning or with a reduced syllabus, it must be done.
I do not care what Doctor X says to Doctor Y; I do not mind how they rage and tear at each other. The fact is that children who are placed in stressful situations will fail, if they are placed in an educational situation that they cannot handle. It would be better for someone to pass a few subjects and develop core skills so that they can pick up their education later than for them to be told, "You can do it" and receive extra work. I come back to the example of dyslexia. People are told, "Work harder and you will achieve". I am sure that that is a way of bringing on a stress-related illness for people who, in fact, have a different learning pattern. It happens. The Minister should make sure that people are given learning patterns which they can actually achieve. That should be done, and the Minister can give us some assurances on it.
Other than that, when can we expect to have a definitive—I hope—study programme in place? When can we expect the reports, at least? I say that because generally in such arguments, one side is eventually
battered into submission but will still have a few adherents who go on until their dying day. That is the usual pattern. What emphasis has been given to finding definitive answers? It strikes me that labels are getting in the way of effective treatment. If people are told that this is a predominantly psychological condition, when it is a secondary one, as seems to be the consensus—I am surprised that there is consensus, but there seems to be—that will get in the way of effective treatment. If that can be established and made plain to everybody involved, we will probably achieve a way of living with the condition, even if we go on researching it for a long time. I call for that assurance from the Government. They may not be able to change the progress of scientific knowledge, but they can certainly establish a pattern for dealing with the by-products and effects of a condition that we have identified as a real one.2.15 p.m.
Earl Howe: My Lords, this is an unusually difficult debate for non-medical parliamentarians such as myself, who come cold or nearly cold to what is, by any standards, a highly technical subject. However much background reading I may do on the clinical character of ME—I have done a good deal—I am aware that it does not qualify me in any way to pontificate on those matters and certainly not to pronounce on the essentially aetiological issues underlying the noble Countess's Question. The noble Countess, on the other hand, is in a quite different position, as she is of course steeped in the subject. She deserves to be listened to with particular care; and it is not surprising that I should find myself impressed by what she has said today.
In trying to summarise her concerns, I hope that it is not too colourful to say that we are looking at a doctors' battleground; for it is apparent that, for some years, there has been a sharp division of opinion in the world medical community about what ME actually is. Since 1969, as the noble Countess said, ME has been formally classified by the WHO in its international classification of diseases as a neurological disorder—in other words, an organically based condition, albeit with psychiatric components. To others, it is first and foremost a psychiatric or behavioural diagnosis, albeit with a range of physical symptoms that are psychosomatic in origin. I hope that that is not too simple a way of describing the essential difference of view.
It is a difference, as we have heard, that has profound implications. For legal and medico-administrative purposes, the formal classification of a disease determines who treats the patient and how—in other words, whether one is referred to a psychiatrist or to another specialist such as a neurologist. If ME is an organic, physical illness, a psychiatrically oriented response, particularly one focusing on cognitive behavioural therapy, might not, to a layman, appear to get to the root of the difficulty, although I take note of everything that the noble Lord, Lord Turnberg, said in that context.
The WHO guide to primary care is one of the key sources of guidance for English-speaking doctors in general practice. That is why it was with surprise that patient groups noted a couple of years ago that the guide and its associated web guide appeared to take a stance completely opposite to the official WHO line, classifying ME under the heading of "Mental and Behavioural Disorders". The diagnostic criteria for ME as listed in the guide were totally inconsistent with the internationally accepted criteria, omitting to mention numerous biological abnormalities and placing undue emphasis on lifestyle factors. How were such inconsistencies to be explained? It turned out that that part of the WHO guide had been compiled by the Institute of Psychiatry at King's College Hospital, London, and the Department of Psychiatry at Oxford University, where a number of the proponents of the "psychiatric abnormality" school of ME are based. In September 2001, the WHO issued a statement effectively repudiating the classification of ME in the WHO guide and on the website.
When I was in the Ministry of Defence, I heard nothing but good about Professor Simon Wessely, and it is no purpose of mine to make his position difficult. I take no pleasure in, and set no store by, the suggestion that Professor Wessely effectively hijacked the WHO logo to give credence to his own view of ME as a mental illness. Nevertheless, I am uncomfortable that the professor does not appear to be doing his utmost to clear the air on this issue.
The noble Lord, Lord Turnberg, was kind enough to give me some papers that defend Professor Wessely's position, the tenor of which he reflected in his speech. I have to say that I did not find those papers as useful as I had hoped. While making clear that the professor does indeed regard ME as a real condition—I accept, of course, that he does—they not only gloss over many of his numerous published pronouncements but also skirt around the key issue of what he regards the nature of ME as being. That is important because of the very considerable influence exercised over government policymaking by those who believe that ME is an inherently mental illness.
If in the UK not enough emphasis is being placed on the WHO definition, it is likely that research on ME, which everyone agrees is vitally necessary, may be wrongly balanced. I should be interested to hear from the Minister how much research is being directed to the possible neurological and physical causes of ME as opposed to other possible causes.
There are other consequences too. If the UK, for some reason, departs from the long established WHO line, there is an obvious potential impact on disability benefits. I understand that, at present, the mobility component of DLA is not available to physically incapacitated individuals diagnosed with ME. It would be helpful to hear from the Minister why that is.
I am concerned, too, that if the definition of ME as a mental disability gains further ground, there will be profound implications in the context of the reform of the Mental Health Act. The Government's original proposals included a power to enable doctors to
impose compulsory treatment orders on adults and children. I have considerable difficulty with the concept of compulsory treatment orders in any case, without the thought that they might capture those who should not be classified as being mentally ill in the first place.Reputable doctors of my acquaintance will say that in treating a patient with ME, the best approach by far is a holistic one, involving mind and body, in which the patient feels that the doctor has a real empathy for him and that all his concerns are being taken seriously. But that is far from being the universal experience. There is a risk of my being too anecdotal, but I have read numerous accounts of patients who have presented to their doctor with the debilitating and distressing physical symptoms that are ascribed to ME, and who have been told, in essence, that the symptoms are psychosomatic and that they should stop making a fuss and go home. Once we get onto that kind of territory we are on a dangerously slippery slope.
I have a particular concern for children with ME. A child presents with symptoms consistent with ME and is classified not as having an illness with an organic cause, but as being mentally disturbed. So the question is asked: what is making him mentally disturbed? All too often, the answer is that it is the parents; that is, that a parent is in some way inducing the symptoms in the child. If a parent is inducing them, the cause is clear. What is behind it is Munchausen syndrome by proxy—that ill-founded diagnosis which is so flimsy yet so powerful and which, as recent criminal cases have shown, has been instrumental in bringing about desperate travesties of justice for mothers and families. So instead of asking how the child should be treated, the question becomes: is the child safe to be left with the parent? Should care proceedings be considered? That is a train of thought that in general practice and social services is far from uncommon; and all because children who are genuinely physically ill are classified as though they are not.
Those are the issues that we have to confront. I hope that the Minister will do so head on and that in his characteristically thorough way he will take away with him the many important questions raised in this debate and ensure that they are followed up with a proper reappraisal of this distressing and complex condition, and the guidance that is given on it. What matters is that patients with ME are treated appropriately and well. In turn, that depends on clarity from academics and evidence-based treatment guidelines. It is clear from this debate that we have some way to go before that point is reached.
2.24 p.m.
The Parliamentary Under-Secretary of State, Department of Health (Lord Warner): My Lords, I, too, thank the noble Countess for initiating this debate, primarily because it provides me with an opportunity to state the Government's position on CFS/ME. I know well the noble Countess's particular interest in ME and her commitment to improving the experience of people with this condition. I share the same predicament as the noble Earl, Lord Howe, of
not being an expert in this subject. However, I shall pluck up my courage and nervously tiptoe into what he called the medical background. As regards his point about disability living allowance, I do not know the answer, but I will make enquiries and write to the noble Earl.I begin by recognising how distressing and debilitating this condition can be for individuals, their carers and their families. I will go on to outline the actions that we are taking to improve services for this patient group. I am sure that we all agree that the most important thing is to ensure that patients receive the treatment and care that they need. It is certainly difficult to disagree with the point made by the noble Earl, Lord Howe, that, in these circumstances, a holistic approach probably is the right way forward.
I must emphasise again that my primary concern is the treatment of patients and the research associated with the condition, and not a semantic argument, as my noble friend Lord Turnberg eloquently explained. I certainly defer to the scientific and historical knowledge of the noble Lord, Lord Walton, in what I thought was a very helpful and clear set of remarks. We should all have regard to his background and knowledge in this area.
I understand that there are a wide range of views about the most appropriate ways of providing care and treatment for patients with CFS/ME. We want to gain a better understanding of this condition and the best ways of treating it. I hope that we can all acknowledge that, in general, doctors and other professionals working in this field are highly committed to providing the best possible care for their patients. It is worth putting clearly on the record that therapies such as graded exercise, cognitive behaviour and pacing came from an independent working party. They were not all invented in the head of Professor Wessely.
I turn now to Professor Wessely who has featured rather prominently in our debate, and on whom the noble Countess launched a rather unfair personal attack. He has a very good reputation for the work that he has done over many years, which my noble friend Lord Turnberg explained and, rightly, defended Professor Wessely's reputation. His research has taken forward our understanding of CFS/ME in many respects and has widespread respect from the medical/scientific profession. He has received a research medal from the Royal College of Physicians—not, I hasten to add, the Royal College of Psychiatrists; he has been elected to the Academy of Medical Sciences; and he has received a commendation in the last research assessment exercise, all for his CFS/ME research.
I must tell the noble Countess that I met Professor Wessely after her last attack on him and tried to understand what might have upset her about his approach. I came away impressed by his responses, arguments and deep concern for the welfare of patients. I think that noble Lords should also be aware that Professor Wessely started the very first NHS service solely for CFS/ME patients, and has been active in service development and NHS care for CFS/
ME ever since. I understand that he has also worked closely with Action for ME, also attacked—again, I thought, unkindly—by the noble Countess. I believe that we should focus on the best ways to assist and support patients with CFS/ME and not on attacking individual clinicians.I turn now to the issue of classification and stress that it is not the Government's role to endorse or otherwise the classification of individual diseases. That is something that is best decided by the WHO following consultation with interested parties. Of course, the UK plays a full part in the work of the WHO through its membership on its executive board where the UK's representative is Professor Sir Liam Donaldson, the Chief Medical Officer.
The WHO's internationally recognised international classification of diseases—ICD—is a system that enables deaths, injuries and diseases to be identified and monitored in a consistent and comparable way over time and across geographical boundaries. It is not diagnostic criteria and it is not used by clinicians as such. The current version, ICD-10, classifies CFS in two places: as neurasthenia in the mental health chapter, F48.0; and as myalgic encephalomyelitis in the neurology chapter, G93.3. The diagnostic criteria used in ICD shows that the WHO has essentially put the same condition in both places, apart from an explicit mention of viral causation in G93.3. That is the WHO's formal position.
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