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- Published on Sunday, 11 May 2014 21:46
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Fibromyalgia Association UK calls for greater awareness
and education to help thousands of diagnosed patients in the UK
London, May 12th – Fibromyalgia Association UK (FMA UK) today calls upon MPs at a closed session at the House of Commons to request for greater research into the level of fibromyalgia suffering in the UK. Campaigners for the charity, predominately run by volunteers, demand a clearer assessment on the extent of the condition ahead of an official review by NICE in 2016.
The annual awareness day marks the release of a recent study by PIP Health on behalf of FMA UK into the levels of satisfaction of patient diagnosis and treatment. Notably:
- Over half of sufferers rated their treatment as poor or very poor 1
- Only 23% said the treatment process was good or excellent 1
The research also highlights how patients’ frustrations are exacerbated by inappropriate and irrational use of medicines not approved by the UK in a search for pain relief1. Insufficient research and development of treatments has left many patients without hope of recovery.
A referral for physiotherapy is quite common but not all physiotherapists understand fibromyalgia and inappropriate levels of exercise are often given resulting in more pain and therefore less mobility. Alternative therapies are also a popular treatment, and although this can see beneficial results for the sufferer, these treatment are limited on the NHS.
The only previous existing study by Harris Interactive2 presented at the European Parliament in 2008 showed that 82% of primary care physicians and 63% of specialists in the UK reported that they had little or no fibromyalgia training. In fact the UK had the worst results compared with France, Germany, Italy, Spain and the Netherlands. Results from the new study would suggest there has been little or no improvement.
Pam Stewart, Chair of Trustees at Fibromyalgia Association UK said, “Today we ask MPs for immediate action. For too long the disease has experienced a lack of investment in research, limiting understanding but now we stand at the forefront of the debate, representing all interested parties, asking for a commitment from Government to address this important and challenging disease.
“A change is needed in how healthcare professionals perceive fibromyalgia. Better standards of treatment would prevent thousands suffering at the hand of the disease, who are unable to leave the house, go to work and no longer able to look after their families.”
These findings highlight the urgent need to tackle escalating numbers of people suffering from a large number of symptoms that attack patients. At present there is very little research being carried out in the UK and sufferers are told there is no cure.
Msrtin Johnson of the FMA UK Medical Advisory Board said about the survey results
"The results of the FMA survey prove that doctors must not simply reach for their prescription pad when treating the symptoms of fibromyalgia - no specific therapy stands out as the cure for all symptoms, however in general, patient's symptoms improve the most with activities related to self management"
– ENDS –
About Fibromyalgia Association UK
FMA UK raises awareness of fibromyalgia by providing information to the general public, people with fibromyalgia, medical professionals and politicians. We also support research into all aspects of fibromyalgia. Through these initiatives we hope to improve the availability of effective treatment for this painful disease.
About Fibromyalgia
Fibromyalgia is a chronic condition of widespread pain and profound fatigue. The pain tends to be felt as diffuse aching or burning, often described as head to toe. It may be worse at some times than at others. It may also change location, usually becoming more severe in parts of the body that are used the most. The fatigue ranges from feeling tired, to the exhaustion of a flu-like illness. It may come and go and people can suddenly feel drained of all energy - as if someone just "pulled the plug".
Media Contacts
Pam Stewart, 07796 616269
References
1Fibromyalgia in the UK Patient Intelligence Report conducted by PIP Health on behalf of FMA UK.
2Fibromyalgia Global Impact Study Advancing Understanding, Aiding Diagnosis, 2008, Harris Interactive, http://www.enfa-europe.eu/assets/downloads/global.pdf
 FMA UK May 12th 2014 Press Release | [FMA UK May 12th 2014 Press Release] | 333 kB |
| FMA UK May 12th 2014 Survey Results | [FMA UK May 12th 2014 Survey Results] | 488 kB |
 FMA UK May 12th 2014 Survey Results (Powerpoint) | [FMA UK May 12th 2014 Survey Results (Powerpoint)] | 191 kB |
Highlights
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- National Helpline 0300 999 3333 (10am - 4pm Mon - Fri)
- Benefits Helpline 0300 999 0055 (10am - 12pm Mon, Wed and Fri)
- Complimentary information booklets for doctors and other professionals (fully referenced)
- Books and videos
- Website Contacts with legal specialists
- Conferences
- Local support group and helpline contacts
If your Health Care Professional needs some education in fibromyalgia you can request that an FMA UK Health Professionals Pack is sent out to them. All we need is the name of the Health CareProfessional and the address of their practice. We will then send a pack to their surgery addressed from us to them.
You can request a medical pack using this form.
You can find a Support Group near you by contacting the Regional Coordinator for your area. If there does not happen to be a support group near you then maybe you can join with some other members and set one up. Support groups provide a social benefit as well as the opportunity to share tips on coping with fibro. They come in all shapes and sizes and we are often told how they have helped people.
