Recognition of Fibromyalgia as a Disability — [Mr Adrian Bailey in the Chair]

Part of Backbench Business – in Westminster Hall at 10:14 am on 15th January 2019.

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Photo of Jonathan Edwards Jonathan Edwards Shadow PC Spokesperson (Treasury), Shadow PC Spokesperson (Transport), Shadow PC Spokesperson (Foreign Intervention), Shadow PC Spokesperson (Business, Energy and Industrial Strategy) 10:14 am, 15th January 2019

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, 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 offers little support.