APPG

Minnutes of May's APPG meeting

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Category: APPG

Published on Wednesday, 13 September 2006 12:29

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National Fibromyalgia Coffee Morning at Westminster, May 11^th 2006

At Westminster Rob Wilson MP, chair of the All Party Parliamentary Group on Fibromyalgia, hosted a coffee morning on behalf of FMA UK to raise fibromyalgia awareness with MPs the day before World FM/ME Awareness Day to which all MPs were invited to attend. 

Rob Wilson MP opened the coffee morning by thanking everyone for coming and how important it was to celebrate and recognise FM/ME World Awareness Day.  The meeting was addressed by the shadow health minister, Andrew Lansley MP (Con) for Cambridgeshire South and the Liberal Democrat Spokesperson for Health, Steve Webb MP, for Northavon, Gloucestershire. 

Andrew Lansley MP informed the meeting that the APPG was an important opportunity for fibromyalgia sufferers as it provided a forum for health professionals and can have a dramatic impact on the NHS and influence the treatment of the illness. Andrew also stated that it is not just the treatment of FM that is important but also the understanding and investigation of the physiological causes as if these are not identified it can be very difficult to treat the illness. GPs with a special interest in fibromyalgia would also be helpful, he said, and needs to be encouraged through professional leadership in this discipline at PCT level. Medical Research Council research that highlights the quality of life for fibromyalgia sufferers is essential, he stated.

Steve Webb MP told us that support groups were absolutely vital for illnesses like ours that are little known and thanked FMA UK for facilitating this with their nationwide network of support groups. He informed us that the Dept of Health has written 25 letters on fibromyalgia since August 25^th 2005 as responses to MP letters from their constituents. He suggested that a good campaign would be for fibromyalgia sufferers throughout the country to write to their MPs asking them, for example, to find out what provision has been made by the DoH for Fibromyalgia. This would then inundate the DoH with letters about the condition that they would be bound to reply to. Be proactive, he said, be a pain in the backside and keep nagging!

This was a unique networking opportunity for fibromyalgia sufferers to tell MPs the problems that they face and for health professionals to elaborate on ways of treating FM. Dr Kim Lawson of the Biomedical Research Centre at Sheffield Hallam University told me he had had an article published in his local paper 'The Sheffield Star' to coincide with World FM Day. He had also contacted 6 local MPs two of whom attended the coffee morning: Clive Betts MP for Sheffield Attercliffe and Nick Clegg MP for Sheffield Hallam. Clive Betts said he would be interested in speaking to a group of FM sufferers in Sheffield. Russell Brown, MP for Dumfries, told me that he had talked to a group of fibromyalgia sufferers in his constituency and found out from their problems them how isolated they felt. 

In summing up, Rob Wilson mentioned that he was trying to organise a debate on fibromyalgia at Westminster in the autumn to which a health minister was bound to attend. Members of the public would not be able to ask questions but MPs would be able to, so it is vital that you contact your MPs to feed them the questions you would like asked at this debate.

We would like to thank Rob Wilson MP and his PA Susan Thatcher for organising this event. Pam Stewart, chair of FMA UK, has already booked the same for next year and was able to leave a huge pile of FMA UK flyers at reception for a very willing receptionist to hand out to all those who passed by! Awareness of Fibromyalgia has been raised once again, but we must remember that there is much more to be done, and we must all be willing to play our part however small. Thanks go to all of you who have urged your MPs to attend this event. Please do more of the same; it makes all the difference.

Sue Tait

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