Recognition of Fibromyalgia as a Disability

Marsha De Cordova Excerpts

Tuesday 15th January 2019 Westminster Hall

[Marsha De Cordova (Battersea) (Lab)]

It is a pleasure to serve under your chairmanship, Mr Bailey. I am afraid that my stop clock has just died, so do help me with the time and bear with me as I will not be able to see a clock.

I congratulate my hon. Friend the Member for Chesterfield (Toby Perkins) on securing the debate. I think that all of us across the Chamber would agree that he has done an excellent a job of raising the matter on behalf of his constituents and fibromyalgia sufferers across the UK. He made some powerful points. He talked about the desperate need for more research, stressing the point that although this debate is about the work of the Department for Work and Pensions, the subject crosses over into the work of the Department of Health and Social Care. I am sure that the Minister will take that forward and work with her colleagues in that Department on the issue.

My hon. Friend spoke about the impact that fibromyalgia has on sufferers, and how it affects all aspects of their everyday lives. We are focusing on social security matters, but there are also issues with work, as many colleagues have expressed today. Obviously, the huge challenges with access to social security should not go unnoticed. Many Members have made that point today, and I am sure that the Minister will address it when she responds.

Many hon. Members—some are no longer in the Chamber—made some really valid contributions and interventions. My hon. Friend the Member for Sheffield Central (Paul Blomfield) intervened to highlight the lack of understanding of the effect of fibromyalgia on day-to-day living and, in particular, on accessing social security. Members highlighted the challenges that fibromyalgia presents and the problems it brings, including in being assessed and qualifying for personal independence payment. My hon. Friend spoke about fibromyalgia being a fluctuating condition, which it is.

I agree with the hon. Member for Southend West (Sir David Amess) that my hon. Friend the Member for Chesterfield is a champion for people with fibromyalgia; he has certainly brought it to my attention. My hon. Friend the Member for Heywood and Middleton (Liz McInnes) shared her experience of cases of fibromyalgia and recognised the impact that the condition can have in the area of work.

I thank the hon. Member for Morley and Outwood (Andrea Jenkyns) for sharing her personal experiences, particularly in relation to memory and fibro-fog, as well as the fatigue that fibromyalgia causes. I commend her for being so open about the condition and for the way she is just getting on with life, as many people with a long-term disability do, including me.

I congratulate Adrienne, the constituent of my hon. Friend the Member for Chesterfield, as well as Fibromyalgia Action UK and Versus Arthritis, on all the work they are doing to raise awareness of the condition. Fibromyalgia was first recognised by the World Health Organisation back in the 1970s, and we know that in the UK up to 2 million people are affected by it and that as many as one in 20 people suffer from it. Yet it remains a condition that is still often unrecognised, under-diagnosed and, in many cases, totally invisible.

As we have heard, the symptoms associated with fibromyalgia include widespread pain across the entire body. In the words of one sufferer, it is a

“generalised pain that can be anything from a shooting pain in my arms, hands, fingers, legs, feet, toes, back and shoulders.”

It can also cause headaches. Another sufferer has said:

“Sometimes it feels like I’m hitting a brick wall...I get irritated easily and am quick to get frustrated and angry”.

The symptoms include an increased sensitivity to pain, fatigue and difficulties in sleeping. There are often also problems with memory and concentration, which is sometimes known as fibro-fog. Many Members mentioned those problems today.

For those who suffer from fibromyalgia, the symptoms are life-altering and the pain they experience is very real, but to the rest of the world—including the general population—the condition can sometimes seem invisible. We also know that many healthcare professionals find it extremely difficult to diagnose fibromyalgia, which helps explain why it is only on a case-by-case basis that the condition is recognised under the Equality Act. Many people face constantly having to go back to get diagnosed, making visit after visit to their GP practice, and the fact that the condition has many different symptoms relating to different areas of the body makes it even more challenging for sufferers.

There is no specific diagnostic test for fibromyalgia. Instead, there have been many accounts of sufferers facing years of referrals, MRI scans and so forth. Even if people are diagnosed with the condition, they are forced to wait for months, if not years, to receive treatment. Many hon. Members spoke about the urgent need for more research. One hon. Member—I am not sure whether they are still here—mentioned the research taking place in Sweden and the US, and called on the Minister to look again at how we can commit to more research into fibromyalgia, because we know that the condition affects so many people.

We know that there are many difficulties in diagnosing fibromyalgia. In response to the petition that my hon. Friend the Member for Chesterfield presented last April, the Government pointed towards the National Institute for Health Research. However, we know that fibromyalgia affects all aspects of life, so I will now turn to the impact it can have on employment. Fibromyalgia sufferers face difficulties in being able to stay in work and in getting the right support while they are in work. We know that the disability employment gap has remained at 30% over the last year. However, one of the best employment support programmes is the Access to Work programme. It ensures that those who suffer from fibromyalgia are actually aware of the programme, but it also raises awareness of its work among employers, because it can be a valuable resource for employers making reasonable adjustments for employees and for sufferers. Many sufferers want to stay in work and can stay in work. I will continue to press the Minister to ensure that the Access to Work programme is adequately funded, so that more funding is available for those suffering from fibromyalgia.

We have heard many accounts from many Members today that show that it is not only employment but social security that is a huge problem for people suffering from fibromyalgia. We know that 3% of PIP claimants have fibromyalgia, of whom the vast majority are women. Assessments for PIP are carried out by private companies, and in some cases they have insufficient knowledge of fibromyalgia and the impact it has on daily life, because it is one of the “invisible” conditions. That is really important.

We know that the framework for the current assessment process, not only for PIP but for employment and support allowance, is flawed. Fibromyalgia, because it is a fluctuating condition, is not being picked up in PIP assessments, and we know that the assessment framework is failing far too many people. That presents challenges for sufferers when it comes to accessing that essential additional payment, which contributes towards meeting the extra costs of living with fibromyalgia. I say to the Minister again that we must listen to all the testimonies about how PIP affects people and we must recognise that the assessment framework is not fit for purpose. She must commit to reviewing it.

Finally, I will talk briefly about the Equality Act. Because of my own disability, I come under it, and there is no reason why fibromyalgia cannot also be seen as a disability under it. We know that fibromyalgia is assessed on a case-by-case basis, but in the future it is fundamental that the Act begins to recognise the impact that fibromyalgia has on people’s daily lives.