Recognition of Fibromyalgia as a Disability

Tuesday 15th January 2019 Westminster Hall

09:30

[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?

[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—]

[Mr Adrian Bailey (in the Chair)]

Before I call the next speaker, I make it quite clear that I will call the Front-Bench spokespeople at 10.30 am. A lot of Back Benchers want to contribute—I am told 10—so I suggest an advisory time limit of four minutes at this stage. However, I will probably drop that to a hard time limit if the earlier speakers take up an excessive amount of time.

09:53

[Sir David Amess (Southend West) (Con)]

I congratulate the hon. Member for Chesterfield (Toby Perkins) on raising this subject. Frankly, until he became interested, we had not spent too much time on it. Over the years there have been battles to hear voices on autism, dyslexia and ME, but it has taken the hon. Gentleman’s raising the subject to get so many colleagues here this morning.

We all know people who, when asked how they are, go into great detail about having this and that wrong with them. We call them hypochondriacs. However, there is a great danger that people with fibromyalgia are somehow not recognised. It is a rotten illness. Some 2.1 million people suffer from it—one in 20 people—and women are seven times more likely than men to experience it. It is awful.

I say to my hon. Friend the Minister that the hon. Member for Chesterfield should be declared the fibromyalgia champion, on a non-party basis. Now that he has started the ball rolling, he should lead on this subject and we should follow. I will not repeat many of the things he said, but I absolutely agree on the importance of recognising fibromyalgia as a disability under the Equality Act and understanding the debilitating and long-term effects on sufferers’ lives. For those living with this painful chronic disease, lack of awareness leads not only to many suffering in silence, but to their often receiving inadequate support and treatment.

I also say to my hon. Friend the Minister that I found out what we are doing in Southend, with regard to fibromyalgia provision, and it is not brilliant. We have a chronic fatigue syndrome service across Essex, which also takes referrals from GPs for other forms of fatigue, not only CFS or ME. There is not a single streamlined resource in the Southend area, although three departments provide a service to fibromyalgia patients, meaning that they have different routes to access services. However, it is not really a niche service. I am sure that other hon. Members have had similar experiences.

We have heard about the waiting time for diagnoses and the lack of understanding of GPs. It is also important to ensure that patients themselves have a better understanding of the condition. As the hon. Member for Chesterfield said, we are unfortunately struggling to find a cure and to understand how this happens. I highlight the importance of research in improving the lives of fibromyalgia patients. So much about the condition is still unknown. We do not even have a clear understanding of its cause and, more critically, there is no known cure. We should certainly invest in research. With the right understanding, investment and attention, we can do more to ensure that fibromyalgia gets the treatment it deserves.

I have the highest regard for my hon. Friend the Minister. She will not perform any miracles today. She will agree with all colleagues who speak. However, I am getting a little frustrated about action. That is what I am really asking for. The Health and Social Care Secretary spoke about the 10-year plan. Will my hon. Friend say something in that regard, and cheer us all up by saying that the Government take this illness seriously and have a plan on which they intend to deliver?

09:57

[Liz McInnes (Heywood and Middleton) (Lab)]

It is a pleasure to serve under your chairmanship, Mr Bailey. Under the Equality Act 2010, only cancer, HIV and multiple sclerosis are automatically recognised as disabilities. For all other debilitating conditions—including visual and hearing impairments, motor neurone disease, epilepsy, dementia and cardiovascular disease—in order to be defined as a disability under the Act, they must be proven to be a physical or mental impairment that has a substantial and long-term adverse effect on the sufferer’s ability to carry out normal day-to-day activities. No doubt many campaigners for the conditions I have named, as well as many others, would like those conditions to be automatically recognised as disabilities, but as the debate is on fibromyalgia I will concentrate on that.

Before I was elected to this place, I worked as a clinical scientist for the NHS and was also a workplace rep for Unite the union. As a rep I represented a colleague with fibromyalgia when the Pennine Acute Hospitals NHS Trust was formed by a merger of four hospitals: North Manchester Hospital, where we worked; the Royal Oldham Hospital; Fairfield General Hospital in Bury; and Rochdale Infirmary. Inevitably, as happens in a merger of that kind, services were rationalised across the four sites, with the main pathology lab where we worked relocated to the Royal Oldham Hospital.

My colleague had a great deal of difficulty with the relocation because of the extra traveling time and because she would no longer be working near her home. She was in constant pain and was just about managing to hold down a job working close to her home, without the added stress and pain of traveling an extra 14 miles every day. Sadly, her manager was unsympathetic and seemed to have difficulty in recognising that she suffered from an extremely debilitating condition. No concessions at all were made for her condition, and she was forced to make the move, which caused her additional pain.

Had fibromyalgia been recognised as a disability, the NHS, as my colleague’s employer, would have been obliged by law, under the Equality Act, to make reasonable adjustments to accommodate her condition and keep her in work. That could have involved allowing her to work shorter hours, allowing for extra rest breaks or even finding her alternative work on the North Manchester Hospital site so that she did not have to travel. Her case emphasises why it is so important that fibromyalgia is recognised as a disability; so that it becomes legally incumbent on employers to make reasonable adjustments.

Sadly, that person is not alone. I have had at least one constituent who has had to leave her job because of this condition. Louise-Ann Wilshaw contacted me last week and asked me to attend this debate. She told me that she had had a very tough year being off sick from work and eventually having to resign because of the debilitating effects of the condition. At just 45 years old, she says that her future seems very bleak. She is uncertain whether she will ever work again. She is also struggling with accepting and learning to cope with her illness and having to support herself financially. Illustrating the effects of her illness on memory and concentration—the fibro-fog, to which my hon. Friend the Member for Chesterfield (Toby Perkins) referred—she finished her email to me by apologising for any spelling mistakes that she might have made.

Many of those who have to leave work because of their experience of fibromyalgia often have trouble accessing the relevant benefits. Assessment for ESA and PIP depends not on a person being diagnosed with a particular health condition or disability, but on how their health condition or disability affects what they can and cannot do, as determined by a work capability assessment or PIP assessment. We need to do more to support those affected by fibromyalgia. For many, acknowledging their disability as a disability would be a great start.

[Several hon. Members rose—]

[Mr Adrian Bailey (in the Chair)]

Order. I call Andrea Jenkyns, who has a four-minute advisory time limit. After her speech I will impose a three-minute time limit.

10:01

[Andrea Jenkyns (Morley and Outwood) (Con)]

It is a pleasure to serve under your chairmanship, Mr Bailey.

I cannot remember a day without pain in more than 15 years. When I was first diagnosed with fibromyalgia, it was less understood than it is today. We have come on in leaps and bounds. Fifteen years ago, it was felt to be very much a condition in someone’s head, but it is much more widely understood today, so we are moving in the right direction. I thank the hon. Member for Chesterfield (Toby Perkins) for securing the debate, which is important not only to raise awareness but to ensure that we get more research in this area.

I shall speak briefly about what it is like, on a daily basis, to live with this condition and then say a little about the current legislation and what I think could be done to help sufferers a lot more. The hon. Gentleman discussed some of the symptoms. The widespread pain is one of the worst things. I am talking about waking up in the morning and being bent over with pain. You feel like you are 80 because every muscle in your body is in pain, and that continues throughout the day. I have found that the medication provided really zonks me out. It causes me to have even more memory lapses, which in our profession is not good. You do not want to be feeling sleepy all the time.

It is a good job that I have kept my sense of humour about this. I remember one occasion back in 2015, when I was newly elected and a guest on one of the political programmes. Even to this day—three years on from being elected—I get very nervous when I know that I have to speak in a debate or do a media appearance, because I never know when the fibro-fog is going to come on. I remember that during that political programme, I could not think of a word as basic as “economy”, and what other word is there for economy? I do not know whether anybody else can think of one. So I was there, with the cameras on me, and I just wanted the ground to open up and swallow me, but I just laughed it off and dealt with it.

On another occasion, I was at a supermarket, unloading everything at the till—I had a whole week’s worth of shopping and baby stuff—and I completely forgot my PIN. The way I have dealt with that problem since is that, just as in “Who Wants to be a Millionaire?” you can phone a friend, I phone my mum, when I have that memory lapse, to remind me of my PINs.

Joking aside, the lack of sleep is an issue as well. Last night I had three hours’ sleep, and that is a regular occurrence. But I feel very lucky. My sister has multiple sclerosis. She is only 10 years older than me and is blind in one eye and losing the sight in her other eye, but she is a real trooper and runs her own business. I do think that the way we approach things in life can help. I am very lucky, in that I do not suffer with the depression side of fibromyalgia, and I think that is a real crux of it, so I would like to ask for more support for the depression elements of it. What I find is that each day is a struggle. I just keep focused and keep busy; I am probably living off adrenaline. When you get home in the evening, you collapse into bed and then, when you stop blocking it out, you realise what pain you were in. Then there is that vicious circle of lack of sleep and the cycle begins again. The fibro-fog, extreme tiredness, extreme pain and trouble remembering things are the big things for me.

Trauma can bring the condition on. I think that when I lost my dad, that made the situation worse. As the hon. Member for Chesterfield rightly said, stress can make things much worse. I had a constituent who lost two young babies to cancer. That is how her condition was brought on, and she has struggled since.

I shall wrap up by saying this. There is provision under the Equality Act 2010, but it is on a case-by-basis. I think that is right, because everybody is different, but we need to ensure that fibromyalgia is more recognised and that there is greater support, better medication, which does not zone people out, and better support for depression. Also, the physical treatment is not just about physiotherapy; deep tissue massage is brilliant, but people cannot get that on the NHS. Could my hon. Friend the Minister look at such things, please?

[Several hon. Members rose—]

[Mr Adrian Bailey (in the Chair)]

Order. I will now impose a three-minute time limit.

10:06

[Patricia Gibson (North Ayrshire and Arran) (SNP)]

This condition, as we all agree, is not widely known about or understood. Often those living with it feel that they are drowning in despair and their loved ones are at a loss as to how best to support them. It is believed that up to 2 million people in the UK live with the condition. The true causes of it have not been established, but it is thought to be related to abnormal levels of certain chemicals in the brain and changes in the way the central nervous system processes pain messages carried around the body. It is also thought that there may be a genetic predisposition. In many cases the condition appears to be triggered by a physically or emotionally stressful event. There is no cure, although there are some treatments that can ease the effects.

I pay tribute at this juncture to the very important self-help groups in my constituency that help sufferers with this condition. There is no denying that it is a complex condition and there is a genuine lack of societal recognition of it. It is a truly disabling condition and must be treated and recognised as such for those seeking support from our welfare system.

Consultations undertaken by the Scottish Government show that current PIP assessments are simply not fit for purpose for those with fluctuating conditions such as fibromyalgia. Where conditions involve symptoms that fluctuate and vary, an effective assessment of illness must be flexible to take account of that. The problem is that disability assessments in the current UK welfare system are tick-box exercises, so the answers need to be yes or no even when complex, fluctuating and distressing conditions are being assessed. How can the assessment of such a condition truly be conducted in that way and still be meaningful? Clearly, simply ticking boxes cannot capture the distress, trauma and debilitation of such a complex condition. However, those living with this disease must subject themselves to that process in order to access essential support.

We need a welfare system that fully understands what those with this condition endure every single day as they struggle with everyday tasks that the rest of us take for granted. We need to ensure that the lives that they are living are reflected in the support they receive. That is the right thing to do, so I urge the Minister to put those laudable aims in motion without any further delay. Any further delay will mean greater suffering for those affected and their families, which ought to shame us all.

10:09

[Justin Madders (Ellesmere Port and Neston) (Lab)]

It is a pleasure to serve under your chairmanship, Mr Bailey. I congratulate my hon. Friend the Member for Chesterfield (Toby Perkins) on securing this debate.

I have an interest to declare: my wife is a fibromyalgia sufferer. I want to talk primarily about her experience of the condition. Perhaps the hardest symptoms to understand are the ones that we cannot see. The fatigue literally wipes her out for days at a time. There is also the pain: to the outside world she looks okay, but underneath she is suffering. In her own words, she said:

“I do experience various aches and pains. These can differ from aching muscles to painful joints, especially knees and ankles; tenderness all over my skin like I’m covered in a thousand small but painful bruises; and sometimes it feels as if every bone in my body is burning.”

Of course, I just want to give her a hug, but doing that makes her wince. It is so frustrating knowing that I cannot help.

My wife considers the cognitive challenges—the “brain fog”, as she calls it—the most irritating symptom. She also said:

“Sleeping does not come easily. It is very difficult to get to sleep and when I fall asleep, I wake up within minutes.”

There is not enough time to go through all the symptoms, but we have heard about many of them today. The biggest thing I would like the Government to take away from today is the experience we had in getting diagnosis and treatment. My wife said:

“When I was first diagnosed with fibromyalgia, three years ago, I was actually quite relieved…I knew things were getting worse. Despite numerous tests, there seemed to be nothing wrong with me.

I recall multiple visits to my doctors where I would tell them how exhausted I felt and they told me that I was probably depressed—that being a working mum with three kids was tiring and difficult.”

Hearing that just made her despair.

[Alex Sobel (Leeds North West) (Lab/Co-op)]

On that point, my constituent James wrote to me saying that a lot of medical professionals look at him as if the condition does not exist, and that the worst part is that nobody understands it and it is not recognised. He got zero support. He suffers from physical depression. The antidepressants do not work and he cannot get the support or the treatment that he needs from the NHS.

[Justin Madders]

That is exactly the experience that we have had and so many other hon. Members’ constituents have had. Speaking about how she felt before she got her diagnosis, my wife said:

“Sometimes, just having a bath would wear me out. I spent most weekends in bed or on the sofa…I just had no energy to move. I couldn’t do stuff with my children or even cook dinner. And I couldn’t understand why I felt like this. I knew other people got tired, but they still managed to live their lives. And so I thought I must just be lazy or completely lacking in any self-control…So when I was finally given my diagnosis, I was pleased that it wasn’t just me making it all up. It was not all in my head or character flaws leading to laziness and ill-discipline. I was and am actually ill. This is something beyond my control. And although it might be unfortunate, at least I now knew what it was.”

I was relieved as well. I knew that something was wrong, but I did not know what. On reflection, I think we both realised that she probably had the condition for years and all the time it was getting worse. We knew something was wrong, but we felt that nobody was listening.

[Tonia Antoniazzi (Gower) (Lab)]

The most shocking thing about fibromyalgia is that it mostly affects women—seven women to one man. My constituent came to visit me on Sunday at a surgery and she has just emailed me now to say that after that five-minute meeting it has taken her until today to recover. Does my hon. Friend agree that we cannot continue to ignore this?

[Justin Madders]

That is certainly something I recognise. My wife tries to live by pacing herself. That is the only way she can manage her condition. She knows it is a lot worse in winter than in summer and it will flare up if she over-exerts herself. She can save energy for specific occasions, for example a conference, work or an evening out, but no matter how much she plans, it can catch her out. She will be too exhausted or in too much pain to meet a deadline or go to a meeting. She ends up giving her apologies and feels that she is unreliable. She has practically given up trying to plan social things in advance. It is incredibly frustrating.

Unless more research can be done into this condition and more awareness raised among the medical profession and employers, fibromyalgia suffers will continue to be disadvantaged by more than just their symptoms. For us, this is not just about how fibromyalgia is classified under the Equality Act 2010, but, in common with many recurring and fluctuating conditions, about how people with these conditions are treated and supported. There needs to be much more research into the condition alongside consistent treatment pathways, with better training for medical professionals to recognise and then treat the symptoms.

Services should be in place to support fibromyalgia sufferers to enable them to live their lives as fully as possible. It has taken my wife two years, at her insistence, to be referred to a pain management clinic. A year on, she is still waiting to be seen. All the time she is suffering and her condition is deteriorating. I hate what this condition has done to my wife and our family. It is so frustrating not being able to help her make the pain go away, not being able to help her find a way for her to live her life as she should. It is so frustrating that there appears to be no hope on the horizon that things will get any better soon.

10:14

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

Diolch yn fawr, Mr Bailey. My wife is also a sufferer of fibromyalgia. I asked her if she wanted me to make a speech publicly declaring her condition and she was eager for me to do so, because one of the biggest feelings felt by fibromyalgia sufferers is helplessness.

My wife was recently diagnosed, but she has been suffering from the symptoms for five years. The trigger event was the birth of our second child—giving birth is of course a very physical, traumatic experience—and she has suffered since that day. It is a terrible, life-long condition, once it catches hold of an individual. Chronic pain is the main characteristic of the condition, as we heard from an actual sufferer, the hon. Member for Morley and Outwood (Andrea Jenkyns). The pain is constant, but the condition flares. The flares can last for weeks. The symptoms then are extremely severe—there is no reprieve.

Chronic pain is always associated with chronic fatigue, because sufferers cannot sleep and find themselves in a vicious cycle. The other main condition is hypervigilance, and sensitivity to noise and sound. My wife has gone from living a very active lifestyle to now living minute by minute, which has a huge impact on her social life and our ability to enjoy a family life. It is life-changing.

The medical pathway is extremely convoluted. There is a lack of awareness at not only primary care, but secondary care. My wife has been fortunate to be referred to the Royal National Hospital for Rheumatic Diseases in Bath, but she is at the start of a very long waiting list, five years after being diagnosed. There is a huge amount of work to do in Wales, where health is devolved, for us to improve pathways for people who suffer from this condition.

Before special care is provided, treatment is based on the painkiller continuum—different painkillers of different strengths—and then also different antidepressants, which have their own very serious side effects. The major symptoms are fatigue, widespread pain, joint aches, migraines, carpal tunnel, drug resistance, sweating hands and feet, slurred speech, light sensitivity, noise sensitivity, memory loss, food intolerances, irritable bowel syndrome, lower tolerance of physical activity, non-restorative sleep, confusion, anxiety, depression, hearing problems, menstrual issues and chemical sensitivity.

I wanted to say far more about the process of us helping these people, but there is insufficient time. These are very sick people. The health systems and the social security system that we have within the British state at the moment offer little support.

10:17

[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.

10:25

[David Linden (Glasgow East) (SNP)]

In three minutes, I cannot possibly do justice to the many emails I received from constituents; suffice it to say that I thank Lorraine Deacons, Ellie Woodburn, Caroline McGarvey, Geraldine Kennedy and Marie Christie, who all live in Glasgow East and are affected by fibromyalgia. I deeply regret that such a pathetic time limit means that I cannot read out their testimony—I am actually quite upset about that.

I will touch on a number of issues that were raised by charities. On training and education, there is clearly inconsistency among GPs and they need to come into alignment. We cannot have what seems to be a postcode lottery for some of our constituents. If they have a sympathetic GP, that makes all the difference.

[Sandy Martin (Ipswich) (Lab)]

Will the hon. Gentleman give way?

[David Linden]

No I will not, because of the time limit.

Work capability assessments are also a major issue. I understand that one charity worked up guidance with Maximus. I would be grateful if the Minister clarified whether that guidance has been cascaded through the Department for Work and Pensions for decision makers.

The issue of reasonable adjustments has been well covered, but there is a role for the Department for Business, Energy and Industrial Strategy to play. I hope the Minister can have conversations with her colleagues about that.

On alternative medicines, we all accept that patients know their bodies best, so it is important that we respect their wishes. That is a message to health practitioners.

Finally—because I want to show courtesy to the hon. Member for Strangford (Jim Shannon)—a major concern that was raised with me was that social media platforms are hosting groups where misinformation is being perpetuated and where people are talking about suicide. Social media platforms have a real responsibility to get a grip on that.

As I say, I am conscious that many hon. Members want to speak in the debate and had the courtesy to put their names down. On that basis, I will stop talking and allow other hon. Members, who were here at the beginning of the debate, to contribute.

10:22

[Luke Pollard (Plymouth, Sutton and Devonport) (Lab/Co-op)]

I thank my hon. Friend the Member for Chesterfield (Toby Perkins) who has become a real hero for many people with fibromyalgia, because he has given them a voice. Ahead of the debate, I posted on Facebook to ask people to share their feelings and experiences with the people of Plymouth, because there are many fibromyalgia sufferers there. The number of people who have got in touch is extraordinary. Among those people, the common view is that they want to be believed and supported. My hon. Friend’s work has done much towards that. The suggestion of the hon. Member for Southend West (Sir David Amess) about a fibromyalgia champion is a good one that has cross-party support.

It is important to say, and to say clearly, that fibromyalgia is real, that the pain is real, and that the people who suffer from it should be believed. That should not be controversial, but I am afraid it still is. The campaign to have it recognised as a disability is good and important. It would make such a difference to many people’s lives to have that recognition.

Sarah wrote to me to say that,

“the pain is chronic and never goes away…Physically it started with the horrendous pain, constant viral infections, walking along and suddenly my legs would give way and I would end up lying in the road, being unable to change the gears in my car suddenly as I didn’t have any feeling and being unable to function due to feeling so fatigued and having zero energy.”

Among the people who got in touch, it was common to talk about how fibromyalgia rips away the ability to do things that many of us take for granted and how, in many cases, they did not understand why that happened and could not explain it clearly to people. The delays in diagnosis contribute to that suffering.

Fibromyalgia should be classified as a disability. That is a necessary step to dealing with the horrendous stigma around the disease and to directing the attention that people with fibromyalgia need to get the support they deserve.

The real-life stories I have heard from people in Plymouth were about not just their diagnosis and the health system, but how the DWP treated them, especially in their healthcare assessments. Our assessment system does not adequately understand the real-life experiences of many people with hidden illnesses, in particular fibromyalgia and ME, but also many more besides. It really needs to, because they are precisely the people who need support from our welfare system, but are not getting it.

One thing that all hon. Members can do is tackle the stigma around fibromyalgia, as we have done for ME and many other hidden illnesses. To do that, we need to talk about it, give a platform to those people who suffer from it, and recognise that we will not receive mass lobbies in Parliament about it, simply because coming to London—especially from Plymouth and further away—takes a lot of energy and knocks people out for weeks afterwards. We need to recognise that it is real and do something about it.

10:25

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Member for Chesterfield (Toby Perkins) on securing the debate and other hon. Members who have made contributions in a restricted time. Without a doubt, the subject is worthy of a three-hour debate, as the number of hon. Members present indicates.

My introduction to fibromyalgia has come through my constituents in my position as a local representative, a councillor, a Member of the Northern Ireland Assembly and now a Member of Parliament. My constituents have told me about the sensation of being in pain and feeling ill. One lady said that her day-to-day life was having her sight affected and having no energy.

Clearly, my heart went out to that constituent, not simply because she has a difficult life, with days where she cannot get out of bed, eat or even really drink, or simply because she is young, but because I want her to get so much more out of life than a daily battle to do the things that most of us can do, such as showering and basic hygiene care, but that she cannot. The diagnosis of fibromyalgia will not automatically entitle her to the help that she needs, which is why the debate is so important. She will have to fight another battle to have her illness and needs recognised and accepted. We all know what the issues are.

The specific treatment for fibromyalgia syndrome is a multidisciplinary approach that includes physical rehabilitation, access to hydrotherapy, psychological support, behavioural therapy and education sessions. Alongside that, the European League Against Rheumatism’s guidelines on the condition say that treatment should incorporate collaboration with a range of professionals, including pain specialists, psychologists, physiotherapists and occupational therapists. All that tells me how complex fibromyalgia is, with a lot of different departments managing a lot of different facets. It is little wonder, with respect to the Department and the Minister, of whom I am very fond, as she knows, that some people feel abandoned and alone in the middle of all of those people and departments. It is for them that we stand here today.

We want research and legislation. We need protection under the Disability Discrimination Act 1995. I conclude with a comment from a lady, who says:

“I know a lady who is an absolute whirlwind when she is well. She could be in my office cheering everyone up with a winning smile and charming personality and literally an hour later, she is wiped out and can’t move for days at a time. To expect this lady to be able to attend job centres weekly for hour-long job interviews without understanding that she physically cannot do this is absolutely absurd and yet she is not automatically entitled to ESA and other helps. To believe that she will”—

by some miracle—

“be able to attend her PIP assessment on a certain day is a nonsense and yet she faces losing PIP if she doesn’t present herself to be assessed.”

It is because of people like her, and all those people who live a life of darkness and pain, who battle to live, to eat and to turn their lights on, that this debate is important.

10:28

[Angela Crawley (Lanark and Hamilton East) (SNP)]

It is a pleasure to serve under your chairship, Mr Bailey. I congratulate the hon. Member for Chesterfield (Toby Perkins) on securing the debate and on his efforts to ensure greater recognition, research and understanding of fibromyalgia through the mechanisms of the House. I am only sorry that the debate is in Westminster Hall, where the amount of time is so compressed, and that, because of the structures of this place, most hon. Members have had less than three minutes to say what they wanted.

I will try my best to say as much as I can in the limited time I have, but many constituents who have written to me will not be given a fair hearing, which is unfortunate. I know Brexit is going on today and that is important in its own right, but this is equally important to my constituents and it impacts on their lives. I do not think that we are doing them any justice with the limited platform that we have.

As we have heard, fibromyalgia is a chronic condition with symptoms that can be constant or intermittent for years, or even a lifetime. Hon. Members of all parties have said that fibromyalgia can be difficult to diagnose, because the nature of the conditions fluctuates and symptoms often vary. As various Members have said, it has a huge impact on loved ones. The personal contributions of the hon. Members for Carmarthen East and Dinefwr (Jonathan Edwards) and for Ellesmere Port and Neston (Justin Madders), and the personal experience of the hon. Member for Morley and Outwood (Andrea Jenkyns)—who called for the Government to recognise and support people, especially those experiencing depression—are really important.

My hon. Friend the Member for North Ayrshire and Arran (Patricia Gibson) rightly called on the Government to recognise the condition as a disability and to look at the way that the Department for Work and Pensions system assesses it. The tick-box exercise is not flexible and does not recognise the impact of the condition. I share the frustration of my hon. Friend the Member for Glasgow East (David Linden) that this platform does not do justice to the subject at all. It is unfortunate that limited speaking times have taken over the debate and a lot of people have not been able to say as much as they would have liked.

Many of those suffering from the condition continue to work. Many constituents who have contacted me are not solely reliant on the social security and welfare system of this Government. They continue to work and want to contribute. There is nothing more soul destroying than having a debilitating condition when all they want to do is go out and provide for their families.

When people are unable to work because of fibromyalgia, it is right that the social security system should help them. For many people, additional support from personal independence payments and other forms of support allows them to reduce their hours and manage their condition. Yet many people find, when it comes to reassessing and reapplying for support, that being seen to be self-managing or trying to manage their condition goes against them. The current process goes completely against trying to manage a condition and continue working. That is exactly what anyone would want to do, and hopefully any self-respecting member of this Government appreciates that these people are trying their best to hold jobs as well as manage their condition. The DWP system should not hold that against them.

I will take the limited time I have to give voice to my constituents. Vivian says:

“The problem is, I look okay on the outside. I can string sentences together. I also make eye contact in social situations, but the process itself is so degrading. Stress makes my fibromyalgia worse, meaning more pain for me and I can hardly move. I take as many painkillers and diazepam as I can to lower my pain to a point where I can move without looking sore. What makes me mad is the appeal board know how fibro affects people, yet still have these processes in place. Surely our system of benefits must shake-up if this is how people with genuine illnesses are treated?”

I hope that the Minister will take that on board.

The reality is that for someone to sit there with a form and tick boxes, and fit people into a condition that says they can make eye contact, do their make-up, walk a distance, is a degrading process. I do not think that is something that we would want to go through ourselves, so why would we administer a process that puts other people through that, especially when we have the ability to change it? I do not think it is that hard to devise a process that fits the condition. Alter it slightly, vary it, create flexibility, but for God’s sake do not have a system that degrades people further when many are already at their lowest point.

I do not believe that the Government are doing enough to support people who wish to return to work or self-manage their condition. Another constituent, Donna from Carluke, recently decided to return to work on a part-time basis. She has had to adapt to her illness and, after two years of treatment, agreed to return to work. She works only mornings because she needs the afternoons to sleep, in order to manage her condition and look after her children in the evenings. She was claiming personal independence payment to allow her to work part-time and to supplement her earnings. However, Donna is currently in the process of challenging a refusal to be granted personal independence payment; the process assessor thought she did not need that additional support, because the tick-box exercise does not recognise her condition. The cut in the support that she receives from the disability element of the working tax credit and a council tax reduction means that her household budget is cut by £750 per month, which is more than she earns for working part-time. She still wants to continue to work. She feels she would be better off not working, but she continues to maintain her part-time job and to manage her condition because she has two young boys and she wants to set them an example. That is nothing short of admirable. This woman has gone through years and years of trying to get a diagnosis and a lot of personal stress and trauma in her life, yet she continues to work and give a prime example to her sons. I do not think anyone should be penalised for that.

William from Netherburn was forced to give up work because of the dramatic changes to his lifestyle. He has many other conditions on top of fibromyalgia. He is in constant pain, goes numb and has acute memory problems, yet he was awarded the lowest rate of care when moving from disability living allowance to personal independence payment. This is a flaw in part of the process of transitioning people from their legacy benefits. It is something that could have been altered. There have been countless debates about that in the House. Obviously, it is easy for the Opposition to criticise the Government, but we have given ample opportunity and made many suggestions about how to review, change and adapt the system. It cannot be that hard to adapt a system, even slightly, to recognise that it is not user-friendly for anyone with a condition.

A close friend, Emma Richmond, who I have known since I was 17, was one of the most lively, vivacious, bubbly people I have ever met, but in the last two years I have seen a huge change in her because of this condition. I want to use her words, not mine. She said:

“At the age of 30 I’m using a cane and find I’m losing my social life to pain. Every day I’m in pain and it has never let up. There are days when I can’t get off the sofa due to the pain and fatigue. It’s a debilitating condition. It’s a humiliating condition. I get to the stage where I don’t see why I’m here anymore. I fight to be normal every day. It’s not like me to feel like giving up.”

Emma, like others I have spoken about today, has a full-time job. She works for Her Majesty’s Revenue and Customs, of all Departments. They have been an understanding employer, which prompts the question that if a person who works for a Government Department can have that level of understanding and flexibility, why cannot an individual in society, who engages with other services and other Departments, have exactly the same flexibility and understanding? It seems highly hypocritical, but it shows it can be done—I believe it can be. The Government only have to make minor modifications and changes to the system to deliver the best services they can. With respect to the Minister, I know she always wants to do that.

I ask the Minister to discuss this with her colleagues in the Department and look at the many ways in which the initial assessments can be made fair for people with fibromyalgia and mental health issues to avoid them needing to go through the taxing and arduous appeals process. An appeals process that consistently overturns decisions is clearly flawed. I ask her to get to the root cause, and make the process fairer and more flexible, for my constituents and for my friend. I want to be able to ensure that they enjoy their lives as much as we all can.

10:38

[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.

10:48

[The Minister for Disabled People, Health and Work (Sarah Newton)]

It is a pleasure to serve under your chairmanship today, Mr Bailey. I begin by paying tribute to Adrienne, who I believe is with us today in the Public Gallery. It is through her persistence and determination to use the mechanism of petitioning Parliament that we are here in Westminster Hall today. It is a really good example of how people all around our country can ensure that their voices are heard in this place, so I congratulate her on that.

I also pay tribute to the hon. Member for Chesterfield (Toby Perkins), because he picked up on that opportunity and worked with his constituent. I am very pleased to say, as my hon. Friend the Member for Southend West (Sir David Amess) and everybody else has done, that the hon. Member for Chesterfield is a champion. It is great that he has championed this cause, raised awareness of the issue and made sure that all of our public services are doing everything they can to help people with fibromyalgia, because we have heard today how absolutely debilitating the condition can be and how many people it affects.

Today has been a really good opportunity to build on the work that has been done with the petition and have this debate. I share the frustration that so many people have mentioned that we do not have time to address all the issues that have been raised and hear from the many people who have written to Members across the House because they want their individual voice to be heard.

Before this debate, I extended an invitation to the hon. Member for Chesterfield to bring his constituent into the Department. What we are discussing is a cross-Government issue; it affects the Equalities Office, which is the custodian of the Equality Act 2010. There has been much discussion about what more we can do about health services and research, so I will ensure that, along with me as Minister responsible for the main disability benefits, we have Ministers from the relevant Departments at a roundtable and summit, so that we can properly work with the information that has been provided today and with the great organisations that are undertaking research and standing up for those with fibromyalgia.

I pay tribute to my hon. Friend the Member for Morley and Outwood (Andrea Jenkyns), and to the wonderful husbands who have spoken about wives who are suffering. It is brave of Members of Parliament to stand up and talk so personally about situations that have such a detrimental impact on them. It is difficult for MPs to admit to any sort of weakness; we live in fear of our constituents thinking less of us for expressing that we have a condition or disability that might be perceived as a weakness. However, it is vital that people with disabilities and health conditions are in this place, because they have an important role to play in society. I am absolutely determined to ensure that we have a society in which we focus on what people can do rather than on what they cannot, and in which they are supported to reach their full potential.

I will now draw on some of the points I have been asked to raise. On the support in the health service, we have heard that it is clearly too intermittent. I know that there are good examples; colleagues in the Department of Health and Social Care have told me that there are bespoke services for people with fibromyalgia, but we have heard from colleagues today that it is too much of a postcode lottery and that the services are not consistent. That stems from the fact, which has been recognised today, that it is a difficult condition to diagnose. Because the way in which fibromyalgia manifests is unique to each person, general practitioners want to ensure that they rule out the possibility of other conditions. We have heard so powerfully today that no two people are the same, so GPs, in the absence of a diagnostic tool, need to explore many different avenues before they can get to a diagnosis of fibromyalgia.

[Justin Madders]

It is not just about the postcode lottery. Many GPs do not really know about the condition, and we need to get more understanding out there. My wife saw a number of doctors before she got a diagnosis. Also, her experience of gaining specialist help to access the pain clinic, which hopefully she will do later this year, was that she had to be referred to a rheumatologist to get a diagnosis and then was referred back to the GP, to refer her on to the clinic. That is a pretty inefficient way of doing things.

[Sarah Newton]

The hon. Gentleman makes a very important point, but I understand that to help GPs the Royal College of General Practitioners and Arthritis Research UK have developed an e-learning course on musculoskeletal care, which includes fibromyalgia and is free to all healthcare professionals. It aims to improve core skills in diagnosing and managing any musculoskeletal condition. A medical guide on diagnosis and treatment has also been developed by the Fibromyalgia Association UK, and a mandatory core component of all GPs’ training is an applied knowledge test. This AKT is a summative assessment of the knowledge base that underpins independent general practice in the UK, within the context of the NHS. The content guide for the Royal College of General Practitioners, which serves to prepare trainees for the test, includes specific reference to a required knowledge of fibromyalgia. Clearly, therefore, there is now a consistent attempt to ensure that GPs going through training and coming into general practice have a much better understanding of how to diagnose and treat fibromyalgia than we have seen hitherto.

[Sandy Martin]

Fibromyalgia affects one in 20 women, so it seems bizarre that so many GPs still do not know about it. Training for incoming GPs is clearly effective, and needs to be so, but an awful lot of GPs still possibly need retraining. Fibromyalgia is not the only such condition. An awful lot of GPs have never heard of endometriosis, for instance, which affects one in 10 women. Ought we not to have a system in which GPs are regularly trained in these additional diseases and conditions that affect so many?

[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.

10:49

[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.