Rob Wilson on another glaring omission in national health statistics

Reading East MP Rob Wilson secured a Westminster Hall debate for today, on the subject of Fibromyalgia. North Thanet MP Roger Gale was in the chair.

Highlights from Mr Wilson's speech follow. It is clear that this is another area where the data that ministers gather is inadequate - a theme I wrote about recently.

"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.

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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.

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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.

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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.

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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:

“There are no specific plans to improve the treatment for those living with fibromyalgia.”—[Official Report, 30 June 2008; Vol. 478, c. 655W.]

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

“Information on the number of people diagnosed with fibromyalgia is not collected.”—[Official Report, 21 November 2007; Vol. 467, c. 998W.]

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:

“We have made no assessment of the progress being made by the national health service into improving the diagnosis and treatment of fibromyalgia. We have taken no recent steps to raise the awareness of fibromyalgia among the general public and health professionals.”—[Official Report, 9 October 2007; Vol. 464, c. 516W.]

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.

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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."

Tom Greeves