Recognition of Fibromyalgia as a Disability

Debate between Toby Perkins and Rachael Maskell

Tuesday 15th January 2019 Westminster Hall

[Toby Perkins]

I could not agree more with my hon. Friend. I think that there are many hon. Members here for the debate, on such an important day in Parliament when there are many alternative demands on our time, because we have had a powerful experience of what our constituents go through.

[Rachael Maskell (York Central) (Lab/Co-op)]

Does my hon. Friend agree that the fluctuating nature of fibromyalgia means that the DWP system is not sensitive enough to respond to the challenges faced by those who experience the condition?

[Toby Perkins]

I agree, and I think that that hints at a wider problem in the benefits system assessment regime, which finds it difficult to deal with fluctuating conditions, whether mental health conditions or muscular problems along the lines of fibromyalgia, that are better on some days, or manageable with a huge amount of medication, so that people can get out of the house and may appear better than usual on the assessment day.

--- Later in debate ---

[Toby Perkins]

I do. My hon. Friend will be pleased to know that I will be hot-footing it from this debate to health questions, where I have tabled a question about diagnosis of fibromyalgia in general practice. Other hon. Members might wish to leap on the back of that question and make their own contributions, and the one that my hon. Friend has just made is powerful. There is variability of diagnosis, and I have met a number of different sufferers who have had different kinds of treatment and, as a result of the treatment they have had, present very differently now. That is something I have seen with my own eyes.

Even with all the medical advancements that have been made, fibromyalgia is a condition without a known cause or a known cure. There are many factors thought to contribute to the condition, including abnormal processing of pain due to chemical changes in the nervous system or imbalances in chemicals in the brain such as serotonin, dopamine and noradrenaline. The condition often appears to run in families, suggesting that there is a genetic predisposition to it and, as we have just heard from the hon. Member for Carmarthen East and Dinefwr (Jonathan Edwards), stressful events can be a trigger.

Many people who are concerned that general practice training, which by its very nature is general, is inadequate on fibromyalgia and that that is a cause of the delays in diagnosis. The petition also calls for greater research into fibromyalgia. With over 70,000 diagnosed patients having made claims for PIP, it is clear that this is a widespread problem, but that number is estimated to understate the number of fibromyalgia sufferers by at least 90%.

[Rachael Maskell]

Does my hon. Friend agree that it is vital that there is a clinical specialist in fibromyalgia within each health economy, whether that is led by a general practitioner or a specialist practitioner, to support people with fibromyalgia right through the pathway in accessing services and in managing their own healthcare?

[Toby Perkins]

I recognise that, and I also recognise how stretched our national health service is more generally and the need for us to have that specialist help as early as possible. One thing that is becoming clear is that the delay in diagnosis allows the condition to get worse, which adds to the cost of treating it further down the line. Anything that can be done to speed up the diagnosis will have many economic benefits, as well as medical ones, down the line.

While the suffering and economic cost of treating and supporting fibromyalgia sufferers is so large and the knowledge base on what causes it and how to treat it is so small, this is an area that is ripe for further research. In the Library note we received before the debate, we were told that in the past five years, funding applications for around £1.8 million worth of research were approved. In a single year—I appreciate why this is a false comparison, but it provides some context none the less—the UK spends over £400 million on cancer research. Of course, I do not for a second underestimate the value of research into cancer, but given the problems that fibromyalgia causes and how long patients will live with it, surely we should be spending more than 0.5% of the investment into cancer research on researching the grave and widespread menace that is fibromyalgia.