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RT @robmcd85: If you are looking for a pain diary please feel free to use this. If you'd like it in another format just let me know. Can be…

Articles

BSR/BHPR Conference (Liverpool April 2008)


The delegates who came to visit us included Professors of Rheumatology, Consultant Physicians, General Practitioners, Specialist Rheumatology Nurses, Physiotherapists, Occupational Therapists, Podiatrists, Academic Researchers, Drug Company Directors and others. The spread of delegates was from all around the UK and ROI and some from overseas. One Egyptian doctor was delighted to get the literature as he had to give a lecture in Cairo soon to update his colleagues about fibromyalgia.

A few snippets from our conversations included:

  • A consultant asked if FMA UK sponsored research. He was looking for funding.
  • A specialist nurse was doing an MSc on sleep disturbance and another on fibromyalgia. A researcher was looking at genetics to see if there is a reason why some people who are injured or suffer trauma, get better, while others develop fibromyalgia. There was a visitor from the National Audit Office looking for statistics  and information.
  • We had visits by some of the representatives of the drug companies. They let it be known that the market was beginning to open up but were reticent about revealing specific details. One company medical advisor was impressed with what FMA UK had achieved as mainly a volunteer charity. On this point out of the fourteen charities with stands only two did not operate with paid staff.


It was pleasing to note that there were some areas where courses for fibromyalgia patients had been established and that others were collecting information with the intention of starting courses. These were primarily led by Specialist Nurses, Physiotherapists and Occupational Therapists.

Of the few hundred delegates we spoke to there was one elderly doctor who said he thought the pain of FM was “in the mind”. Norman took him on and eventually he went away thoughtfully with one of the medical packs.
 
It was also good to talk to colleagues from the other healthcare charities, eg Lupus UK, Scleroderma Society, Arthritis Care, British Sjogren’s Syndrome Association, National Rheumatoid Arthritis Society, and others. The commercial companies were also represented and had large expensive looking stands, but all were friendly and helpful. 

As fibromyalgia was not a subject on the conference programme this year, we explored how this could be rectified another year. Betty had the opportunity to speak to the Chief Executive of BSR/BHPR and discussed the possibility of a specialist interest group. The Chief Executive promised she would look into it and get back to us.
 
This was a very enjoyable worthwhile experience and FMA UK should consider this annually and perhaps others (eg RCN Rheumatology Forum Conference). It is by attending such conferences that better care for those with fibromyalgia may result.

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