Recognition of Fibromyalgia as a Disability

Wera Hobhouse Excerpts

Tuesday 15th January 2019 Westminster Hall

[Wera Hobhouse (Bath) (LD)]

It is an honour to serve under your chairmanship, Mr Bailey. I congratulate the hon. Member for Chesterfield (Toby Perkins) on securing the debate.

I am here today because Julie Britten, my constituent from the Bath fibro group, came to see me a couple of weeks ago with her partner and very movingly described what fibromyalgia is. We have heard today from two hon. Members whose wives are suffering from the condition. We need to listen to the carers, too, because they feel as helpless, if not more, to see a loved one suffering. They also suffer from the fact that a lot of people, because they do not understand what fibromyalgia is, suggest that it is made up. Suddenly something has changed in their family member and they do not really understand why. That helplessness is one of the most painful things that the sufferers themselves and the carers who live with loved ones have to put up with.

We have already heard a number of points about the condition. As was mentioned, in Bath we have an excellent facility, the Royal National Hospital for Rheumatic Disease, previously known as the Royal Mineral Water Hospital. It is a very old hospital, locally known as “the Min”. Again, because it is not a rheumatic condition, but far more complicated, we need to find facilities where we can directly address fibromyalgia as a disease, rather than tiptoeing around what it is. The main difficulty is that the pain that people with fibromyalgia feel is not directly caused by damage or injury to the area that hurts. Instead, as I understand it, the problem lies in how the brain and the nervous system process pain from that area, so it is complicated.

Fibromyalgia is recognised in the Equality Act 2010 as a disability and an invisible illness, but again, because of the uncertainty, the most important thing that we in this place can do is push for more research and funding for research into the condition. That is at the heart of ending the uncertainty.

Hon. Members may know that I am working on eating disorders, and a similar picture has emerged on a couple of occasions. People do not understand fibromyalgia, which leads to stigma, and our rules and regulations do not fit with it. We need more funding to get to the bottom of what fibromyalgia really is and understand it, so we can end the suffering not just of the people who feel that incredibly debilitating pain, but of their loved ones who also live with it and are affected by it. I ask the Minister to make sure that there is more funding for understanding fibromyalgia.

--- Later in debate ---

[Sarah Newton]

The hon. Gentleman is right. There are so many conditions that we are beginning to understand, as more research and information comes forward, and continuous education for GPs is vital. I understand from the Department of Health and Social Care that such education is ongoing and that there is free learning material for GPs on fibromyalgia.

[Wera Hobhouse]

Will the Minister give way?

[Sarah Newton]

I am really tempted to give way to lots of colleagues, but the more I do the less time I have to address the issues that have already been raised. I have taken a number of interventions, but as the clock is against me I will now press on and try to address as many of those issues as possible, bearing in mind that there will be a follow-up meeting and, as always, I will write to those Members whose particular concerns I do not address in my few remaining minutes.

My hon. Friend the Member for Southend West invited me to invest. We clearly have long-term investment in the NHS, and plans for significant extra investment over the next 10 years have recently been communicated, with a disproportionate amount going into primary care and community services. Since each person is affected in such different ways, the pathway and range of care that people need will largely be co-ordinated in the community, with GPs. The new investment gives us hope, but alongside it we need to ensure that there is both education and training, and improved pathways. The one message I have heard clearly today—I know this from cases in my own constituency, of working with women affected by fibromyalgia—is that people are ping-ponged around the system, between physical and mental health services, with no joined-up care pathway. With so many other chronic conditions, the NHS has got so much better at having evidence-based pathways, so that once people have their diagnosis they understand the pathway they are on, and those who are able to support them know what support is available.

We need to take away and work on so much more from this debate. As many Members have said, it is about getting the ball rolling, ensuring that voices are heard loud and clear, and that we work across Government and the House to improve the quality of life of people with fibromyalgia.

On the benefits system, I want to assure people that fibromyalgia is recognised as a disability under the 2010 Act. It is really important for people to understand that. We have heard today that no two people are affected in the same way, so it is important that we have a person-centred approach to providing support, whether that is encouraging employers to be more aware of fibromyalgia and of the reasonable adjustments they need to make to enable people to stay in work, or looking at how the benefit system supports people.

The benefits system uses a person-centred approach, and I can absolutely reassure Members that the healthcare professionals who undertake the work capability assessments for the employment and support allowance, which is the income replacement benefit for people who cannot work, and the assessment providers for the personal independence payment, or PIP, which is a non-means-tested benefit for people both in work and out of work, have had training in fibromyalgia. A lot of that has been done in the past year, in association with voluntary sector organisations that have provided support. Members will know, because we are often in debates about improving PIP, that I am absolutely determined to ensure that we make the improvements to which we have already committed, so that everyone has access to the support they deserve.