Fibromyalgia

David Jones Excerpts

Wednesday 1st July 2015 Westminster Hall

[Alok Sharma]

Yes, of course; the hon. Gentleman is absolutely right. A common theme is emerging among colleagues participating in the debate.

Let me describe fibromyalgia. It is a long-term condition that causes pain all over the body. As well as widespread pain, people with fibromyalgia may have increased sensitivity to pain, fatigue, muscle stiffness, difficulty sleeping, problems with mental processes, headaches and problems with their bowel and stomach.

[Mr David Jones (Clwyd West) (Con)]

I congratulate my hon. Friend on securing this debate. He mentions the severe pain that sufferers endure. My constituent, Mrs Joanne Kirkby, suffers from this terrible condition. Is he aware that most of the pain relief treatment centres in mainland Great Britain are within England and that if a patient comes from Wales, it is necessary to go through an extremely lengthy and complicated bureaucratic process to access treatment at, for example, the Bath pain relief centre?

[Alok Sharma]

My right hon. Friend makes a very good point. Perhaps the Minister will comment on where treatment is available and where pain clinics are situated.

The exact cause of fibromyalgia is unknown, 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 suggested that some people are more likely to develop fibromyalgia because of genes inherited from their parents. In many cases, the condition appears to be triggered by a physically or emotionally stressful event, such as an injury or infection, giving birth, having an operation, the breakdown of a relationship or the death of a loved one. The key point is that anyone can develop fibromyalgia, although it affects about seven times more women than men.

The condition typically develops between the ages of 30 and 50, but can occur in people of any age, including children and the elderly. Exactly how many people are affected by fibromyalgia is not clear, although research has suggested that it could be a relatively common condition. Some estimates suggest that nearly one in 20 people in the UK may be affected by the condition to some degree. Of course, one of the main reasons it is not clear precisely how many people are affected is that fibromyalgia can be difficult to diagnose. There is no specific test for the condition, and the symptoms can be similar to those of a number of other ailments.

Living with fibromyalgia can be incredibly debilitating. Ahead of today’s debate, a number of local people emailed me about their experiences of coping with fibromyalgia. I want to read out some extracts from the heartfelt and moving words that they sent me. A father of young children writes:

“I have had Fibromyalgia for a couple of years now. My life and that of immediate family has changed significantly in adapting to and attempting to cope with my condition.

I am unable to continue working as a qualified accountant, as my ability to read, write and concentrate have all been significantly affected. I suffer with ‘Fibro-fog’, a difficulty in recalling words or train of thought where the mind goes blank...I find it impossible to switch off from the pain, as it is constantly moving as though it is being scattered around my body.

I, and many of the members of the Reading Fibromyalgia group, experience the lack of understanding of others due to the ignorance relating to this condition that we suffer. As we appear whole there is often a lack of compassion from others and we can be made to feel as though we are malingerers. I have always had a strong work ethic and believe in setting a good example to my children; if I could work then I would work.

My hope now is that there will be a greater understanding of Fibromyalgia and how limiting this condition can be on the individual.”

A female sufferer writes:

“My typical day starts with trying to get my body working. My joints are so stiff with pain that I have to sit on the side of the bed and massage my shoulders, lower back, my knees, elbows and hands. It takes an hour to get showered and dressed. I do feel a failure if I have to get my husband to come and help me.

After having problems with pain, exhaustion and fatigue for several years, they then turned into depression, stress and anxiety. My G.P. finally diagnosed me with Fibromyalgia.

In 2013 I went along to our local Fibromyalgia Support Group…I went in the room and saw that there was ‘nothing different’ with these people. I was reduced to tears to find that they were all like me, young and old, male or female, and that I was ‘Not a Fraud’.”

Another submission that I received was from a male sufferer. He writes:

“Living with Fibro is often difficult and it’s like we have a volume control button that is broken at maximum setting—sometimes the pain and stiffness abate with medication, exercise where we are able to do so and so forth but it always comes back later in the day or within a day or two of doing too much activity.

Depression in people with Fibro is common”

because of

“the life we used to live but many no longer can. This adds to the stress and tension and it can become a vicious circle. Exhaustion is common as well.

The lack of understanding and sympathy from other people including importantly the medical profession makes it all the harder to bear. Yet Fibromyalgia has been recognised by the World Health Organisation since the 1970s as a chronic and long-term health condition. Thousands if not millions of people worldwide have Fibro either diagnosed or not so but they display the symptoms.

Yet people still think we’re making it up, which is very disheartening to us; some even are abusive to us because they don’t understand.”

Ahead of this debate, I spoke to many fibromyalgia sufferers, and colleagues who have contributed have clearly done the same. They will have heard the same things as I heard from constituents and in emails from people across the country, detailing their own experiences of coping with this debilitating condition. Three common themes emerge. First, fibromyalgia is not well enough understood by GPs and the medical profession, as the hon. Member for Strangford (Jim Shannon) said, and there seems to be no significant research effort to find a cure. Secondly, as a result, there is no consistency of approach or care across the country in helping sufferers to deal with the effects of fibromyalgia—exactly the point made by my right hon. Friend the Member for Clwyd West (Mr Jones). Thirdly, the condition is not well enough understood by the general public or employers, and sufferers have told me that they have faced discrimination in the workplace as well as the wider community. That is completely unacceptable.

I want to mention the good work of the Fibromyalgia Association UK, which today merges with FibroAction to speak up with a louder voice for sufferers of fibromyalgia, provide national helplines and raise awareness of the condition with GPs. Although knowledge is inconsistent within the GP and health community, there are pockets of excellence. Last October, I was invited to the one-year anniversary celebrations of the re-launched Reading fibromyalgia support group. There I met with Dr Antoni Chan, a consultant rheumatologist and physician at the Royal Berkshire hospital, who gave a presentation on the ongoing research aimed at understanding the condition and developing treatments. I also met Dr Deepak Ravindran, a consultant pain specialist at the Berkshire pain clinic. The clinic offers a comprehensive service, starting with expert diagnosis and followed up by medical treatment, which is complemented by good support from specialists in physiotherapy and psychology—a truly multi-disciplinary approach. I pay tribute to Dr Chan and Dr Ravindran for the excellent work they are doing to help fibromyalgia sufferers in Berkshire.

As a result of that meeting, I wrote to North and West Reading clinical commissioning group last November, providing a copy of the pamphlet on fibromyalgia that Dr Ravindran has produced and asking the CCG to promote understanding of the condition among the local general practitioner community. Dr Ravindran recently informed me that the need for an integrated and collaborative approach to managing fibromyalgia has been recognised locally, and a community pain service in the Reading area will start in September. That will be a collaboration between the Royal Berkshire hospital and the Berkshire healthcare NHS foundation trust, and its vision is to provide fibromyalgia-specific pain management programmes. That is good news for fibromyalgia sufferers in Reading and Berkshire, but, as other colleagues and I have remarked, the approach is inconsistent across the country.

I have three asks for the Minister and the NHS. First, education and knowledge of fibromyalgia must be improved among GPs and other healthcare professionals, and awareness of new diagnostic criteria must be increased and disseminated more widely. Secondly, strategies that provide an integrated and holistic service with patient empowerment as key must be promoted and developed, because patients need to be involved in decision making and the management of their condition. Thirdly, the aim should be to set up a network of fibromyalgia clinics across the country, so that patients who have had a flare-up of the condition have somewhere to go for treatment other than A&E or hospital.

My final point is about raising awareness of the condition more generally. Jeanne Hambleton, a freelance journalist and health writer, has informed me that last year she wrote to two well-known TV soap operas and asked whether one of the characters could be diagnosed with fibromyalgia to raise viewers’ awareness of the condition. Sadly, she did not hear back from the producers of either programme. I have no doubt that many people watch debates on Parliament TV, but it is safe to venture that many, many more watch soap operas. If the producers of “Casualty” or “Holby City” are watching the debate, they may want to get back to Ms Hambleton about her suggestion. I look forward to the Minister’s response.

--- Later in debate ---

[George Freeman]

The hon. Gentleman makes an excellent point, and he is helping to raise awareness today. I will pass on the points made today to the team at NHS England with responsibility for this issue. The answer to the question on awareness is to support debates such as this, and to promote the work of the charity and the patient advocacy groups.

The routine assessment of pain is a required competency for all healthcare professionals. However, patients who remain in high levels of pain after conventional approaches to treatment have failed are able to access specialised pain services, which are nationally commissioned by NHS England. Patients referred to such services receive multidisciplinary team care from clinicians with expertise in pain management.

[Mr David Jones]

The Minister heard my earlier intervention, and he now mentions specialised pain relief centres, most of which are located in England. He also heard my points about the bureaucratic difficulties experienced by patients living in Wales when accessing such centres in England. Will he liaise with his colleagues in the Welsh Government on whether a smoother path can be achieved for patients from Wales?