Recognition of Fibromyalgia as a Disability

Debate between Toby Perkins and Scott Mann

Tuesday 15th January 2019 Westminster Hall

[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.

[Scott Mann (North Cornwall) (Con)]

Will the hon. Gentleman give way?

--- Later in debate ---

[Toby Perkins]

What can we do to raise awareness of fibromyalgia? I think we will hear from the hon. Gentleman particularly on that subject.

[Scott Mann]

I am grateful to the hon. Gentleman for bringing this debate to the Chamber; as the number of people here shows, many of us have been written to by our constituents. I did a little bit of research, and it seems to me that the USA and Sweden both have good research teams looking at this condition and how it might be helped. Does he think the UK Government should look at what Sweden and America are doing on this particular disease to see how we might be able to help out?

[Toby Perkins]

I do. While Sweden and America have very different kinds of healthcare system, the hon. Gentleman is right that they both have world-leading research capabilities. Clearly, there is a big question for future UK medical research about our leaving the European Union; a great deal of medical research is much easier to do when we have 28 countries paying into it, rather than just one. However, whether collectively with other countries or individually, we have absolutely world-class medical research capabilities in this country and we should contribute towards the global knowledge base on fibromyalgia. The hon. Gentleman makes an important point in saying that.

What can we do to raise awareness of fibromyalgia? Today’s debate is the latest step towards doing just that. We have already had the presentation of the petition, and the fibro campaigners also held a reception in Portcullis House. Around 25 MPs came along to hear more about what life with fibromyalgia is like, and I was delighted that Adrienne Lakin and Billy Mansell were able to present at that reception and to get across to Members a little bit about the impact that it has had. The debate is another important step, and we look forward to hearing more about the Government’s strategy on recognising the effects of fibromyalgia on sufferers and what more they will do to raise awareness.

The petition was also specific about recognising fibromyalgia as a disability under the Equality Act 2010, which is an important and contentious issue. Providers of public services are required to make accommodations for people with disabilities. Many fibromyalgia sufferers would qualify as disabled in their own right, but each sufferer has to prove their own disability. Given that, as we have heard, the condition can take more than a year to diagnose in the first place, it is often quite a bit after that before sufferers are actually recognised as disabled. While many people manage their symptoms and go on to enjoy productive lives, the invisibility of fibromyalgia and the difficulty of diagnosis means that many patients are not recognised as disabled and are often invisible sufferers. As we have heard, that has a knock-on impact on their families, who often attempt to manage caring responsibilities alongside their responsibilities as breadwinners, trying to keep food on the table.

Once diagnosed, fibromyalgia sufferers would like the Government and the Department for Work and Pensions to recognise them as disabled under the Equality Act, ensuring that they get any support that they need to lead productive lives. Of course different patients will have different attributes and needs, but it is a chronic condition that will not get better. Ensuring that they do not have to fight to be taken seriously would be of real value. We heard previously that fibromyalgia may affect as many as 5% of the population, yet less than 0.2% receive PIP due to having it.

I am delighted to set the ball rolling on this important debate and look forward to hearing the perspectives of other hon. Members. Fibromyalgia sufferers need greater certainty, greater research and greater awareness. Collectively, we as a country need to do more to ensure that we not only understand but support them in their illness and in their desire to lead productive lives.