Recognition of Fibromyalgia as a Disability

Toby Perkins Excerpts

Tuesday 15th January 2019 Westminster Hall

[Toby Perkins (Chesterfield) (Lab)]

I beg to move,

That this House has considered the recognition of fibromyalgia as a disability.

It is a pleasure to open the debate and to serve under your chairmanship, Mr Bailey. I am delighted that so many hon. Members have come to support the raising of awareness of a crucial issue. I thank the Backbench Business Committee for selecting the topic for debate, and particularly the hon. Member for Southend West (Sir David Amess), for his support in obtaining and promoting the debate.

I want to pay tribute to two of my constituents, Adrienne and Leann Lakin of Chesterfield, and all the fibromyalgia campaigners who bang the drum relentlessly to ensure that sufferers’ voices are heard. Many intend to come to witness the debate. Their campaigning has been instrumental in persuading other hon. Members to attend or to speak out about fibromyalgia. I was proud to present a petition in Parliament, which reached more than 100,000 signatures on change.org, calling for fibromyalgia to be recognised as a disability and for greater awareness of and investment in treatment. I recognise that the context of the debate spans the responsibilities of both the Department for Work and Pensions and the Department of Health and Social Care, and I hope that the Minister will be able to pass on to her counterpart the topics raised in the debate that do not fall within her purview.

Many in this country are ignorant about what fibromyalgia is, but it is a condition that many people suffer from. It is one of a group of conditions often referred to as invisible illnesses, but sufferers live with its consequences every day of their lives.

[Nick Thomas-Symonds (Torfaen) (Lab)]

I warmly congratulate my hon. Friend on securing the debate. His use of the word “invisible” was telling. Besides raising awareness, is not the debate about getting to the stage where fibromyalgia is diagnosed more easily?

[Toby Perkins]

That is an excellent point, to which I shall return. One of the major problems that fibromyalgia sufferers experience is that it takes so long for their condition to be diagnosed. I shall talk more about what we can do to get earlier diagnosis and better understanding throughout general practice.

Fibromyalgia sufferers experience many different kinds of symptoms. Often there is a heightened sensitivity to pain and extreme muscle stiffness. They often struggle to sleep, which exacerbates their muscular difficulties, and experience extreme fatigue. Sufferers also experience cognitive difficulties—not just headaches but problems with mental processes, known as fibro-fog, and an inability to process things as they did previously. As if those things were not enough, fibromyalgia sufferers can be struck down with irritable bowel syndrome too. A panoply of symptoms means that people have a terrible time. However, often, when those symptoms are dealt with in general practice they are masked as other conditions. Many time-consuming treatments are undergone, but they do not get to the root of things.

[Paul Blomfield (Sheffield Central) (Lab)]

I congratulate my hon. Friend on securing the debate. Sara, a young mother in my constituency, has fibromyalgia, triggered by the birth of the youngest of her three children. She describes a pain so severe that she cannot even hug her kids. She says the personal independence payment assessment process stripped her of her dignity, because of a lack of understanding. Does my hon. Friend agree that there is a need to address unintentional ignorance and a lack of knowledge about what a debilitating illness fibromyalgia is?

[Toby Perkins]

I absolutely agree. My hon. Friend has given a powerful example. Meeting someone with fibromyalgia—this is even more true of those who live with a sufferer—we get to understand what it is like to walk a mile in their shoes. One reason why we asked the DWP to respond to the debate is that, on the face of it, sufferers do not appear to be very ill, but when we hear testimony such as that of my hon. Friend’s constituent we may understand what it is really like.

[Wayne David (Caerphilly) (Lab)]

Like other hon. Members, I have met constituents at my advice surgery who have complained that their fibromyalgia has not been taken seriously. All too often, not only GPs and clinicians but the Department for Work and Pensions among others see it simply as aches and pains. It is important that, as my hon. Friend has been doing, we develop the argument that it is not something to be dismissed easily. It is far more than that.

[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.

[Paul Masterton (East Renfrewshire) (Con)]

I congratulate the hon. Gentleman on securing the debate. My constituent Susan says that the pain she suffers is so bad that the only time she does not feel it is when she is asleep. She mentions that it is not just that the condition itself is not picked up properly within disability assessment, but that it exacerbates other conditions she has, making them even more extreme. Does the hon. Gentleman agree with that point about wider understanding of the effects of the illness within the disability system?

[Toby Perkins]

I entirely agree. The impact on the rest of the family includes caring responsibilities that fall on them, restricting their ability to develop their earning potential. The consequence is that the entire family of a fibromyalgia sufferer will suffer too. It is a powerful point.

Estimates suggest that as many as one in 20 people suffer from fibromyalgia. Since I secured the debate I have been contacted by many MPs—there have been many interventions in the debate—and by constituents and other members of the public. People say that at last someone is talking about the condition, which they or their partner have suffered with for so long, feeling that no one understood. The feeling of being misunderstood is familiar to many fibromyalgia sufferers. Often employers are baffled as to why on some days an apparently healthy member of staff is the life and soul of the party, but on others cannot turn up for work because they are crippled by their condition. By the same token, those employees often feel tremendous guilt that a condition that decimates their ability to contribute keeps striking them down. That often leads them to conclude that they must go into work even though they are in extreme pain, frequently making themselves even more ill in the process. It truly is a vicious circle.

Fibromyalgia sufferers are also misunderstood, as we have already heard, by those who assess them for benefits such as PIP and employment and support allowance, as their conditions are variable and can often be managed in the very short term. Many fibromyalgia sufferers have taken pills to help to manage the pain and support them through an ESA assessment, only to discover that the assessment outcome bears little relationship to their daily experience of living with fibromyalgia.

I have had constituents speak to me about the fact that the tablets they took to enable them to get in a taxi to travel to their assessment and get through that assessment for an hour meant that, when they got home, they were in bed for days afterwards. I think they thought to themselves, “If only the assessor could see me now, half an hour or an hour after the assessment, they would see why I’m unable to work. I’ve been able to get myself through that assessment, trying to comply with the system, but to my own disadvantage.”

[Jonathan Edwards (Carmarthen East and Dinefwr) (PC)]

The hon. Gentleman is making an extremely powerful speech. As I will say in my contribution, my wife is a fibromyalgia sufferer. Is it not the case that stressful experiences actually exacerbate the condition, leading to hugely damaging flare-ups?

[Toby Perkins]

That point is spot on, and made from the powerful perspective of someone who knows what it is like to live with someone experiencing fibromyalgia. I will come on in a moment to some of the other things that are believed to be triggers for fibromyalgia, but the hon. Gentleman is absolutely right. We all know—it is one of our worries about the assessment regime within benefits—the stress of that process: the stress of going through the assessment, of believing that benefits will be taken away or of wondering how they will feel the next day. It is an incredibly unhelpful situation where people’s income is tied to their being ill, so they wake up almost hoping to be ill to justify the income, while simultaneously wishing they were better because they want to be able to contribute. That is something that is known much more widely in our benefits system, but fibromyalgia sufferers are very familiar with it.

[Mary Glindon (North Tyneside) (Lab)]

I congratulate my hon. Friend on securing this debate and on the awareness day that he hosted last year, which was a very informative and moving event. Given all that has been said about sufferers, does he agree that, without the help of support groups such as the one in Newcastle, people with fibromyalgia would perhaps not have any outside support to help them with benefit queries or managing their condition? Those are voluntary groups that have been set up, but should we have more statutory groups to help people with the condition?

[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%.

[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.

[Scott Mann (North Cornwall) (Con)]

Will the hon. Gentleman give way?

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[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.

[Several hon. Members rose—]

--- Later in debate ---

[Toby Perkins]

When Members secure a debate, they always worry about whether they will fill the time, so it is great that this has been one of those debates that could have filled twice as much time. It is hard to pick out any particular contributions, but what the hon. Member for Morley and Outwood (Andrea Jenkyns) said was particularly compelling and, as the Minister said, the contributions from my hon. Friend the Member for Ellesmere Port and Neston (Justin Madders) and the hon. Member for Carmarthen East and Dinefwr (Jonathan Edwards) about the impact on families were also powerful. We will take the Minister up on her generous offer. Thank you.

Question put and agreed to.

Resolved,

That this House has considered the recognition of fibromyalgia as a disability.