Recognition of Fibromyalgia as a Disability

Jonathan Edwards Excerpts

Tuesday 15th January 2019 Westminster Hall

[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.

--- Later in debate ---

[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.