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Westminster Hall

Tuesday 5 May 2009

[Mr. Roger Gale in the Chair]

Fibromyalgia

Motion made, and Question proposed, That the sitting be now adjourned.—(Mr. Blizzard.)

9.30 am

Mr. Rob Wilson (Reading, East) (Con): It is a pleasure to serve under your chairmanship, Mr. Gale, and to have secured this important debate, in my capacity as chairman of the all-party parliamentary group on fibromyalgia, a position that I have held since July 2005. I know that several hon. Members want to take part in the debate, and that was enormously helpful in securing it. The timing today is not helpful to everyone; early on a Tuesday morning following a bank holiday is a problematic time for those travelling long distances from their constituencies. Nevertheless the debate fulfils a long overdue promise to the dedicated and hard-working campaigners on fibromyalgia. I can find no record of a previous debate in the House on the subject, which makes it all the more important to the millions of fibromyalgia sufferers in the country. I have several questions to put to the Minister on behalf of campaigners, and I hope that she will be able to reassure them. I indicated what those subject areas were to the Minister’s staff, but I am not sure whether all the information went through in a timely way.

I should take this opportunity to give a brief introduction to fibromyalgia, as there is little knowledge of the condition. Fibromyalgia is a chronic condition of widespread pain and profound fatigue. Its name is made up of “fibro” for fibrous tissues such as tendons and ligaments, “my” indicating muscles and “algia” meaning pain. A patient can experience widespread muscular pain, stiffness, constant fatigue and non-refreshing sleep. The pain tends to be felt as an aching or burning, and is often described as being felt from head to toe. It can change location and can be worse at some times than others. Because it can come and go, sufferers can feel suddenly drained of energy, as if someone has just pulled the plug on them.

Sixty-eight per cent. of patients report that fibromyalgia has a very strong impact on their overall quality of life, with at least half reporting that the condition strongly impacts on their concentration and memory, physical mobility, overall mood, motivation and drive. A survey of five European countries has shown that fibromyalgia affects between 2 per cent. and 4.5 per cent. of the population, or at least one in 50 people, from children to the very elderly. Fibromyalgia has been shown to have more impact on patients’ lives than many other forms of widespread pain and chronic illness. I believe that the sheer scale of the illness and the suffering that results from it mean that it is high time fibromyalgia was taken seriously as an issue.

My constituent, Jean Turner, is a trustee of the Fibromyalgia Association UK, and works tirelessly to provide help and support for sufferers of the illness.
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Jean is a fibromyalgia sufferer and first reported her excessive tiredness to her GP in 1981. After blood tests and referral to a cardiac specialist to investigate the tiredness she was told that there was nothing wrong. Over the next seven years Jean underwent tests for arthritis, attended a private chiropractor for pain relief and was referred to an allergy specialist, but all the tests were returned as negative. Between 1988 and 1994 Jean did not feel able to visit her GP, because she was made to feel that the illness was all in her head. Fortunately, even though Jean’s GP was convinced that there was nothing wrong with her, she insisted on seeing a specialist and was eventually referred to a rheumatologist, who finally diagnosed fibromyalgia and osteoporosis.

I am sure that we would all agree that the 13 years taken to reach a diagnosis in Jean’s case was far too long. Diagnosis times have improved, but too many people are still needlessly suffering in pain while medical professionals struggle to reach a diagnosis. I am pleased to report that in the past few years Jean has learned how to deal with her condition and enjoys a much better quality of life, but all that Jean and other sufferers would ask is to be believed when they say that they are in pain and are not hypochondriacs. Sufferers want support to be available from the NHS. They want guidelines finally to be produced by NICE, and they want GPs to be trained properly in diagnosing the condition.

Many people do not know that fibromyalgia is a very common illness. It is in fact as common as rheumatoid arthritis and can be even more painful. It is a condition with no age limits. It affects mainly women, from children to the elderly, and the mean age is 49. A staggering 2.7 million people in the UK suffer from the illness. People with mild to moderate cases of fibromyalgia are usually able to live a normal life, given the appropriate treatment. However, if the symptoms are severe, they may not be able to hold down a paying job or enjoy much of a social life.

Fibromyalgia is a condition that often develops after some sort of trauma that seems to act as a trigger, such as a fall or car accident, a viral infection, childbirth, an operation or a huge emotional event. However, sometimes the condition begins without any obvious trigger. The cause of fibromyalgia has yet to be found, but in the past several years research has produced some insights into that puzzling condition; it has identified a deficiency in serotonin in the central nervous system, and a resulting imbalance of substance P, a spinal fluid that transmits pain signals. The effect of that is disordered sensory processing. The brain registers pain when others might experience a slight ache or stiffness. We can only hope that research will discover the cause and result in more effective treatment in the years to come.

I want to consider some of the problems that fibromyalgia sufferers face, beginning with diagnosis. Fibromyalgia is not new, but for most of the last century it was very difficult to diagnose. As I have said, part of the problem is that it is difficult to identify the illness by standard laboratory tests or X-rays. Blood tests and scans will return a negative result and a patient will not necessarily look ill, or will not appear clinically weak. Furthermore, many of the symptoms are found in other conditions, such as chronic fatigue syndrome, rheumatoid arthritis and osteoporosis. It is therefore not surprising that it has been dubbed “the invisible illness”. The problem
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comes when doctors do not have the experience or expertise to make a diagnosis. Nearly half of all specialists reported fibromyalgia as being “very or somewhat” difficult to diagnose.

Not only is the condition difficult to diagnose; diagnosis is a lengthy process in itself. The average time taken for diagnosis is more than two years, and patients report seeing between two and four physicians before a diagnosis is reached. That lengthy period can be very worrying, frustrating and upsetting for patients. Despite the fact that several specialist fibromyalgia syndrome clinics are provided by NHS consultants around the UK, most of those do not appear in their own right on the NHS choose and book system. Even those GPs who know about the condition—and there are too few of those—who are looking for specialist help within the NHS cannot always refer patients directly to consultants with an interest in and knowledge of fibromyalgia. One of the immediate actions that the Minister could take today is to rectify the situation. Those clinics could be added to the choose and book system, and the NHS could build and provide an extensive list of accepted specialist NHS services around the country.

What about the treatment of the condition when a diagnosis is reached? At present, treatment for fibromyalgia aims at reducing pain and improving sleep. Treatment therefore focuses on the symptoms rather than the condition. The best that a doctor can do is give guidance on ways of coping with and treating some of the symptoms. I hope that it does not appear that I am criticising GPs, specialists or the NHS in general. That is not my purpose as I believe that they do fantastic work under immense pressure; however, a major problem is that GPs get little or no training on the condition, and even consultant rheumatologists, who would usually diagnose fibromyalgia, often have little or no specific training.

Professional development is currently hampered by out-of-date medical tests containing erroneous information. Much of the fibromyalgia information that is used by the NHS is provided by voluntary organisations such as the Fibromyalgia Association. In 2008 it was FibroAction that helped NHS Direct to update its online information. It is clear that things need to change. Getting an accurate diagnosis is difficult, and about half of our GPs admit that the condition is often misdiagnosed. They highlight a lack of confidence in their ability to recognise the symptoms of fibromyalgia, or to differentiate the condition from others with similar symptoms. The problem does not rest with GPs alone. It is widespread in the medical profession. Education on the condition is urgently needed; the Government, through the NHS, could be the catalyst.

Mr. Philip Hollobone (Kettering) (Con): I congratulate my hon. Friend on his excellent and informative speech, and thank him for the work that he does as chairman of the all-party group on fibromyalgia. In the Kettering area, the Nene Valley fibromyalgia support group does wonderful work, as do support groups throughout the country.

The central point that my hon. Friend makes is fundamental, is it not? The NHS needs to provide as much help and support for GPs as possible. If it is difficult for specialists to identify the condition, it must be near to impossible for GPs.


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Mr. Wilson: I thank my hon. Friend for his support for the all-party group, and for his interest in the subject. I know that his constituents in Kettering will be pleased to hear that he has raised the matter of GP training.

I also know that the Minister’s heart is in the right place, and that she is anxious for the NHS to help. However, recent parliamentary questions from hon. Members throughout the House have had a less than encouraging response. In June 2008, the hon. Member for Twickenham (Dr. Cable) asked what plans the Department of Health had to improve treatment for people with fibromyalgia. The answer came:

Another hon. Member asked how many people were diagnosed in his constituency, the region and nationwide since 1997. The answer was:

Among other things, I asked the Minister what steps were being taken to raise awareness of fibromyalgia, and what progress there was on diagnosis and treatment. The response was:

I shall not embarrass the Minister by going through all the parliamentary questions and answers on the subject, but there is a discernible pattern. There is clearly no focus on the illness in the Department, and thus no focus on it in the NHS, yet the condition acts as a significant drag on the economy. In 2006, through a parliamentary question, I ascertained that 8,400 people who were claiming incapacity benefit or severe disablement had been given a primary diagnosis of fibromyalgia. We know that that is the tip of an iceberg, as most fibromyalgia sufferers on benefits will have been diagnosed with something else. The economic cost of the failure to diagnose the problem swiftly does not affect only the Department for Work and Pensions; the cost to the NHS and local authorities, too, will be huge. Better awareness and education of health professionals would considerably reduce that financial burden.

Many groups work tirelessly for the sufferers of the condition, and do their best to raise its profile. I take this opportunity to pay tribute to their ongoing work. As chair of the all-party group on fibromyalgia, I work closely with the Fibromyalgia Association UK and FibroAction, but the message regularly comes back that there is a problem in raising the profile of the condition. There is only so much that the third sector can do. Is it not time for the Department to consider a nationwide awareness campaign to highlight fibromyalgia syndrome, and the importance of fast diagnosis and the provision of treatment? Do the millions of people who suffer with the illness not deserve at least that from their NHS?

Raising the profile of the condition is difficult without the support of the relevant authorities. I draw the House’s attention to an application made by FMA UK in July 2007 to the medical advisory board of the
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National Institute for Health and Clinical Excellence. The aim of that application was to establish a set of clear guidelines on fibromyalgia. In May 2008, FMA UK had still not received a response, and asked me to intervene. Despite my intervention, still no response was received. Suddenly, and incredibly coincidentally, in the last couple days—since today’s debate was arranged—FMA UK has finally been contacted by NICE. FMA UK was informed that its application had been unsuccessful.

The fact that FMA UK has received an answer does not excuse the arrogance or incompetence—or both—that NICE has shown until now. Frankly, it is insulting and deeply frustrating for those who work tirelessly to raise the profile of the condition to have to wait for a debate such as today’s before the relevant authorities take them seriously. A delay of two years is not good enough.

Given everything that I have said this morning, it is imperative that a clear medical framework is set out for GPs. It is more than long overdue. NICE’s response will be extremely disappointing to FMA UK, as well as to fibromyalgia sufferers throughout the country, and I urge NICE to consider the matter again. Will the Minister give fibromyalgia sufferers some hope this morning by saying that she will personally intervene, asking NICE to ensure a clear set of guidelines for the diagnosis and treatment of the illness?

The many sufferers of fibromyalgia also look to the Department of Health for leadership and support. They were particularly gratified that the chief medical officer, Sir Liam Donaldson, recognised the impact of fibromyalgia and its prevalence in the UK as a cause of chronic pain in his annual report of 2008. Sir Liam said:

Sir Liam has articulated what FM sufferers require—information, and access to NHS tailored services.

The voluntary organisations know that some good specialist NHS services are provided for fibromyalgia patients. Such services include those provided by the clinic at Guy’s hospital. Professor John Davies has had many years’ experience in treating sufferers of fibromyalgia and myalgic encephalomyelitis. Russells Hall hospital in Dudley has been providing a chronic pain service for more than 25 years, but only in the last 12 years has it developed from being a single-person service to the present well-resourced and multidisciplinary team. There are also good multidisciplinary teams at the Royal Bolton and Poole hospitals. We have also seen some great local initiatives. For instance, an eight-week course for fibromyalgia patients is being run by south-west Essex community services in conjunction with Basildon university hospital.

I have already said that I have enormous respect for the many hard-working organisations, such as FibroAction and FMA UK; and, of course, one should not forget the work of the PolkaDotGals and their splendid calendar.

Although she is not my constituent, I feel that I ought to mention Lindsey Middlemiss, who I believe is here today. Lindsey is a constituent of my hon. Friend the Member for Newbury (Mr. Benyon). My hon. Friend is unable to attend the debate, but I know that he takes a keen interest in Lindsey’s work and that he supports the
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work of the all-party group. Not only is Lindsey the chair and founder of FibroAction, but she is involved with the West Berkshire Neurological Alliance that operates in my constituency of Reading, East.

Lindsey developed the illness following a whiplash injury. She deteriorated so rapidly that within nine months she had to give up her career. Her story is similar to that of many other sufferers; despite numerous visits to her GP and several tests, it took her more than two years to secure a diagnosis. Lindsey was lucky enough to obtain private treatment, but many others may not have been so fortunate. One of the common problems for fibromyalgia patients is that the lack of NHS treatment and understanding means that they need private treatment, and their families have built up large debts in their attempt to help.

One of the major obstacles faced by Lindsey was that her GP was not aware of any other treatments or services that could help her. It was down to Lindsey’s determination and her family’s support that she met Professor Davies at the fibromyalgia clinic at Guy’s hospital. With his help, Lindsey’s condition proved manageable, but Lindsay would like to know why it took five years and a great deal of money for a healthy young woman to get the health care that she so desperately needed.

Where do we go from here? In February 2005, Dr. Ernest Choy and Dr. Serena Carville from King’s college London produced a nine-point recommendation for the management and treatment of fibromyalgia. It is a credible report and is worth mentioning for that reason. I shall not go into the full details of the plan today, but I would like to highlight some of the most important and thought-provoking points. Choy and Carville concluded that a full understanding of fibromyalgia requires an assessment of pain, function and the psychological impact on patients. They also believe that individually tailored exercise programmes, including aerobic exercise and strength training, can be very beneficial, as well as other therapies, such as relaxation and physiotherapy. Relaxation works very well for almost everyone affected by this condition. It reduces tension in the mind and body and calms the symptoms, especially the pain. Choy and Carville concluded that, ultimately, medical professionals need to be able to listen to, and believe in, an individual’s experience of pain. Only then can a programme of treatment be established to reassure them and reduce stress and anxiety.

I ask the Minister to assist fibromyalgia sufferers by helping to deliver the following: first, it is clear that we need to work towards providing greater education for general practitioners. It is unsatisfactory that many GPs are not confident or able to diagnose the illness in a timely fashion. Timely diagnosis is key to helping people with this condition. Secondly, it is not acceptable that NICE has only just acknowledged FMA UK’s application to provide a clear and unequivocal set of guidelines for GPs. Those guidelines could be used in the training of the medical profession and could reduce the stressful experience currently associated with diagnosis.

Martin Horwood (Cheltenham) (LD): I am very grateful to the hon. Gentleman for securing this debate. I was taken aback by some of the statistics that he gave, which were new to me—and I was also slightly taken aback by the PolkaDotGals’ charity calendar. However, there is
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the risk—this was the experience with drugs for dementia and other illnesses—that NICE will use the lack of a good evidence base as a reason for refusing to recommend treatment. Is that a risk, given some of the issues that he has mentioned, about credibility, belief and so on?

Mr. Wilson: The hon. Gentleman is right that NICE has behaved in that way in the past, but we are looking not for advice on drugs, but for a set of guidelines so that people can be diagnosed quickly and GPs can properly understand their functions in this regard.

Thirdly, effective treatment needs to be available throughout the country, but that should be signposted by the NHS, rather than third-party organisations. Fourthly, the profile of fibromyalgia desperately needs to be raised. As I mentioned before, despite its dedication, the voluntary sector can only do so much. We all have a part to play in raising awareness, but help from the Government is much needed. As we have seen, fibromyalgia is a complex condition with numerous contributing factors, and although research has advanced our understanding, it is clear that much work remains to be done.

I know that the Minister has many pressures on her time and that there are also many pressures on the resources of the NHS. However, I know that she understands the chronic pain and suffering affecting millions of people throughout the UK and that she will do her utmost to provide assistance. I hope that today’s debate will help to raise the profile of this “invisible” illness; that is the very least that I can do to help to support the many campaigners who have done their best to raise its profile.


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