Fibromyalgia Syndrome
The final item is a members' business debate on motion S1M-1124, in the name of Shona Robison, on fibromyalgia syndrome. The debate will be concluded after 30 minutes without any question being put.
Motion debated,
That the Parliament notes Fibromyalgia Syndrome Awareness Week from 10 to 16 September; recognises that the condition, which affects up to 4 per cent of the population, is frequently overlooked or minimised by health professionals; recognises the problems sufferers have in claiming appropriate benefits; supports the demand for better education and awareness-raising about the condition, and calls for more research into the condition so that Fibromyalgia Syndrome is taken seriously as the devastating "hidden" disability that it is.
Several members have come to me and asked, "Fibro-what?", so that I have had to explain what fibromyalgia is all about. That is not surprising, as for a long time fibromyalgia syndrome has been the hidden disability. I am raising the issue during Fibromyalgia Syndrome Awareness Week to try to bring that hidden disability out into the open. I was surprised when I attended a meeting of the Tayside support group, which was attended by more than 150 people, all of whom exhibited various symptoms related to the condition. That is where my awareness of the issue came from.
What is fibromyalgia syndrome? It is a very debilitating condition that involves severe pain in the fibrous tissues of the body, such as the tendons, ligaments and muscles. Sufferers can be in agony because their muscles become spasmodic, tight and painful to move. The syndrome is also characterised by extreme fatigue, sleep disorder and many other unrelenting symptoms ranging from migraines to allergies.
To date, the hidden disability has no cure. Another symptom is forgetfulness, which many sufferers find to be the most frustrating symptom because often they cannot remember the names of everyday items. I know of one lady, a member of the support group, who used to have an important job in Tayside Chamber of Commerce. When she developed the syndrome she had to leave her job because of the effects of the illness. It is a very debilitating condition.
The condition is poorly understood and sufferers often find themselves labelled neurotic. However, it is a real condition that is estimated to affect 4 per cent of the Scottish population. Fibromyalgia syndrome probably has the same level of awareness as ME had 10 years ago.
The syndrome affects seven times more women than men. We do not know why. Indeed, we do not know the answers to many questions. We do not know what the underlying causes of the syndrome are. Some evidence suggests that the illness may be post-viral; other evidence suggests that it is environmental. Organophosphates have also been linked to the condition. We need more research to find out the answers to those questions.
The key problems faced by people with fibromyalgia syndrome are lack of awareness in the medical profession and lack of access to the benefits system. The medical profession is generally unaware of the syndrome and many patients are told that they are suffering from muscle pain. In extreme cases, patients presenting a series of symptoms have been told that they are hypochondriacs.
The input of the medical profession is hugely important, particularly when it comes to claims for benefits. A claim for incapacity benefit, for example, depends not on the nature of a person's medical condition, but on how the condition affects the person's ability to work. The efficacy of the medical testing arrangements—the all-work test—depends on the doctors who are employed to carry out the medical assessments keeping abreast of and updated about conditions such as fibromyalgia. That is not happening. Doctors know very little about fibromyalgia and in some cases are misinformed about the condition. In both situations, the result is that many people with fibromyalgia who are very debilitated by the condition are denied access to benefits.
The Deputy Minister for Community Care could address the lack of awareness in the medical profession by agreeing to the issuing of guidance on the condition by the health department. I hope that that is the least that the minister will agree to today.
There needs to be far more research into fibromyalgia. Some good work has been done, but it is very limited and depends on the interest of a few people in the medical profession. I draw members' attention to the work of Dr Abdul Al Allaf from the rheumatology unit at Ninewells hospital, who has carried out limited research into the condition. He has been very supportive of the Tayside support group. That is not enough. We need more funding in order to investigate the condition. In the United States, far more research is under way. There is also much lobbying in order to secure funding from the National Institute of Health. We need something similar in Scotland.
Currently, there is no effective treatment for fibromyalgia, let alone a cure. That is likely to remain the case unless resources are put into researching the condition. Fibromyalgia sufferers are calling for acknowledgement, recognition and awareness. I hope that the minister will give them a good response.
I was one of Shona Robison's colleagues who had to ask what fibromyalgia was. I do not speak as an expert or with much knowledge of the subject; if I tried to do that I would merely add to the confusion.
I want to talk about the fact that there are many conditions, across the board, that the medical establishment, Governments and society take a long time to recognise. In such cases, sufferers find themselves isolated and confused for many years.
One condition that is close to my heart is Gulf war syndrome. I know that Shona Robison's colleague Colin Campbell has worked hard to try to get the Ministry of Defence to recognise and treat that.
It took 10 years to raise awareness of ME, to which Shona Robison referred, and it is still treated with suspicion by clinicians.
I sit on the cross-party group in the Scottish Parliament on epilepsy. Although epilepsy is recognised as a condition and much more is known about it, health professionals are often cautious about dealing with it or helping to develop some form of strategy on it. Although health boards develop strategies—often at the prompting of Parliament—often they are not followed.
The Health and Community Care Committee should consider how the health service can be more responsive to new conditions. Perhaps the starting point should be acceptance followed by investigation, rather than suspicion and forcing the poor sufferers to prove that they have a condition. In my time in the Army, I visited the military hospital in Washington DC, where different treatments were tried for Gulf war syndrome—there was never any suspicion.
I would like to finish—
The debate is about fibromyalgia—a few words on that would be welcome.
According to the Royal College of General Practitioners, the single most important intervention in the condition is a comprehensive explanation. That would go a long way towards helping sufferers.
I congratulate Shona Robison on bringing this important debate to Parliament.
I know what fibromyalgia is, not because of any personal experience or medical training, but because of the experiences of one of my constituents. With her permission, I will briefly explain her experience. Christine Cottrell from Hawick was a senior industrial engineer who led a full life with her family and children and held down a responsible job in manufacturing in Hawick. She took out a critical illness policy with an insurance company against any problems that might arise in the future.
In June 1997, after taking out the insurance policy, she began to notice some problems with her muscular movements and some pain in her hands. From that beginning, the fibromyalgia syndrome grew and grew. She is now so afflicted that it was only with considerable pain and effort that she was able to come to my constituency surgery. I know what fibromyalgia is because I have seen it. It is very difficult for my constituent to walk 3 or 4 ft across a room, to change chairs or to go to bed at night. The effort that she made to come to see me was so outstanding that I felt that her case had to be investigated at all costs.
As Shona Robison said, a problem with fibromyalgia is that it is not well understood. However, after I wrote to the Minister for Health and Community Care, she was kind enough to reply with a full description of the condition, which was exactly the same as the one that Shona gave, and advice as to how my constituent might pursue matters with her insurance company. The insurance company's attitude was that the fibromyalgia syndrome did not exist. I invited the insurance company to come to see my constituent, but it declined to do so. It held to a number of outdated principles and said, in effect, that the syndrome was not well recognised or understood, despite the fact that, with the help of ministers at Scottish and UK level, we were able to explain to the insurance company what was meant by it.
Even with that helpful information from those ministers, the insurance company did not budge until we obtained expert advice from Ninewells hospital, where there was a specialist. I am sad to say that the insurance company then moved the goalposts by saying that there had been non-disclosure, which in my view was a fictitious assertion. The insurance company is still not prepared to meet my constituent's claim.
But enough of that. Christine Cottrell allowed me to mention her case because she felt that it is one that illustrates this serious problem. She has been in contact with some of the other sufferers. Fibromyalgia apparently affects more women than men and is quite prevalent within the community, but, as the Minister for Health and Community Care said in her letter to me:
"We do not hold statistics on the possible prevalence of FMS."
I think that it is probably time that we started to do so. I invite the Deputy Minister for Community Care to think about that. He may not be able to give us an assurance tonight, but he could take the matter away for consideration. The minister could also help explain what the syndrome is, particularly among groups that might come into contact with it, such as general practitioners, consultants and, in particular, insurance companies holding critical illness policies on behalf of their clients.
Not only was my constituent confronted with the difficulties of her illness, but at one stage she was told by the insurance company that it was not permanent—that it was something from which she could recover. I would like to see someone recover from the state that my constituent is in.
The Government can assist us by explaining to professionals what the syndrome is and what the likely effects are, and by ensuring that the message that fibromyalgia syndrome is a very unpleasant, very painful and very distressing disease is put out. We could also do with investing some money in research on the condition to find the causes and obtain treatment plans.
I hope that my constituent's experiences will show that this is a serious problem that requires to be addressed. I look forward to hearing the minister's remarks.
I join Euan Robson in congratulating Shona Robison on her success in obtaining this debate today. It is a strength of this Parliament that it can find time to discuss a condition which, as Ms Robison said, is little understood and about which there is a lack of awareness.
Fibromyalgia is a difficult and complex condition, as all the speakers in this debate have indicated. It is true that it is not fully understood, even by some medical professionals. There has been a great deal of commitment from both professional and voluntary organisations, but gaps remain in our knowledge about its cause, diagnosis and treatment.
We heard about a number of case studies in this debate, and it is clear that fibromyalgia can be the cause of considerable pain and disability. Unfortunately, there is no straightforward, universally adopted, accepted diagnostic test for the condition. There is not even general agreement about what it should be called. It has been referred to not only as fibromyalgia but as fibrositis, fibromyositis, fybromyalgia syndrome or muscular rheumatism.
The condition is characterised by pain and tenderness in the muscles or the tissue next to the muscles. It is often accompanied by fatigue and sleeping problems. The difficulty faced by the medical profession is that such symptoms can be caused by a wide range of medical conditions, due to a spectrum of causes. In the case of any particular patient, the doctor may be unable to make a definite diagnosis. The condition appears to be most common in women, as Mr Robson said, although it also affects men and children.
Since Mr Robson's correspondence with the Minister for Health and Community Care, to which he referred, I am pleased to say that we have found some incidence statistics, gathered by the information and statistics division of the common services agency of the national health service in Scotland.
Some 2,029 people with fibromyalgia were seen in the year to 31 March 2000. That figure came from a sample of 53 Scottish general practices, taken from different communities and with a combined population of 307,741. That would give an incidence of 0.66 per cent for Scotland. The incidence referred to in the motion may be rather higher than there is evidence for, but I cannot dispute that the uncertainties surrounding fibromyalgia and the fact that the statistics depend on diagnosis by GPs may well mean that there are undiagnosed cases.
The NHS provides a range of services to which people with the condition have access, some of which may alleviate some of the symptoms. Aerobic exercise such as swimming and walking can improve muscle fitness, heat and massage may give short-term relief and antidepressant medications can help improve the quality of sleep and muscle relaxation. Many people with fibromyalgia may also benefit from a combination of exercise, physical therapy and relaxation.
The motion suggests that the condition is frequently overlooked or minimised by doctors. Let me make it clear that that should not be the case. All general practitioners receive appropriate training to help them meet the needs of their patients. Training for general practice is intended to provide the future GP with the skills, knowledge and experience necessary to provide quality services to NHS patients. That should and does include conditions for which the diagnosis and treatment are not yet well understood. That approach is designed to ensure—as Ben Wallace was urging—that future doctors have an improved capacity to respond to changing patterns of disease, changing needs and modern patterns of health care delivery. Nevertheless, I appreciate the concerns that have been expressed. The understanding of conditions with no known cause or cure should include an understanding of fibromyalgia syndrome. Today I have asked the chief medical officer to look into the matter and to assure me that it is included in training for general practitioners.
The motion refers to access to benefits, which as we all know is a matter reserved to the Westminster Parliament. However, there is no condition that either automatically entitles a person to disability benefits or automatically excludes them. Everything depends on the effects that a condition has on a person's capacity, not on the name of the condition that is diagnosed. If members are aware of cases of constituents who are having difficulty with benefits—which should not happen—or insurance claims, as Mr Robson described, the best route is for the local member to take them up.
In my many years of involvement at Westminster and here, I have gained experience of the external doctors called in to examine people to see whether they are eligible for disability living allowance or other related benefits. In referring the matter to the chief medical officer, which I welcome, will the minister recommend that external doctors take the condition into account?
The point I was making is that the decision of such doctors should relate to particular activities, as prescribed by the Department of Social Security—a department for which we have no responsibility—rather than to the name of the condition that leads to problems.
Many speakers referred to research. In all cases, health research funds are not ring-fenced for particular conditions. However, priorities for budgets reflect analysis of the burden of disease and of potential benefits. Within those parameters, the chief scientist's office, which is the Scottish Executive health department's principal source of research funding, is always prepared to consider well-founded applications for research into a wide variety of conditions. Indeed, the CSO is currently providing more than £10,000 funding for a research project at Ninewells hospital medical school, whose work Ms Robison referred to and which began on 1 September.
That project, which is a study of bone mineral density in patients suffering from this syndrome, follows a recently completed project on the role of physical trauma in the onset of fibromyalgia. The medical school itself is conducting a long-term self-financed study, due to finish in November, on prevalence and clinical associations. So it is clear—and Ms Robison made this point too—that, at least at Ninewells, the doctors take fibromyalgia very seriously indeed and are taking steps to improve awareness. I hope that today's debate will be a further step towards ensuring that there is broader awareness.
Meeting closed at 17:30.