Recognition of Fibromyalgia as a Disability

Liz Twist Excerpts

Tuesday 15th January 2019 Westminster Hall

[Toby Perkins]

I pay tribute to the voluntary group that my hon. Friend speaks of. We all recognise the incredibly important role that voluntary groups of that sort play, and it is true that, when someone has a condition that is so misunderstood, speaking to other people who have experienced it and to families supporting people who have experienced it is important. I think we are also all conscious that, in an era where local government funding has been cut, often charitable and voluntary groups are the ones seeing their funding cut. Those groups often do not require a lot of funding, but a small amount of core funding enables them to function. That is something that many of us are concerned about.

I am conscious that there are a number of people who have put in to speak. I am very happy to take interventions, but I also do not want to cut into other people’s time, so I will crack on a little bit. Obviously, if there are other pressing issues, hon. Members are free to raise them.

It is hardly surprising that so many employers and assessment staff misunderstand fibromyalgia when, as has been reflected on already, it is so often misdiagnosed by the medical profession. Most fibromyalgia sufferers will live with the condition for over a year before it is diagnosed, and it is often the diagnosis of last resort, which means that sufferers will often have gone through many painful months of ruling out various other explanations and taking other kinds of drugs not relevant to their circumstances before the true cause of their pain is articulated.

[Liz Twist (Blaydon) (Lab)]

Does my hon. Friend agree with my constituent, Karen Mitchell, who has fibromyalgia, that medical help and support is very variable, that there is great variation in how well fibromyalgia is recognised and that we need to ensure that consistent and helpful treatment is available?

[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%.