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APPG

Meeting 19th February 2004

Present:  Jane Griffiths (MP), Philip Barton, Angelo Docherty, Margaret Tansell,   L. Forgacoua, Frank Tansell, Judith Docherty, Jean Turner, Sue Tait, Mary Oubridge, Moira Henderson, Christine Brown, Michael Jones, Norman Farron, Beth Farron

Apologies: Tom Harris MP, David Lepper MP, Janet Dean MP, Michael Jack MP, Jean and Gerry Crossley, Rose Yates-Walmsley, S.A.Wibberley, Eileen McSherry, Wendy Adams, Dr M Nisar, Philip Percival, Lynne Mynott, Heather Butterick, Lynda Murphy

Welcome and introduction 

Jane Griffiths welcomed everyone to the meeting and explained that many MPs were unable to attend due to the House not sitting during parliamentary half term. Jane reported that the AGM of the Fibromyalgia APPG had been held and new officers have been appointed. The purpose of the APPG was intended to raise the awareness of Fibromyalgia with MPs and Ministers. =
Feedback on activities from local groups

Jane invited those present to share their achievements at a local level.  In Merseyside & Wirral an independent Fibromyalgia Support group has been awarded £5,000 from Comic Relief for a study into childhood experiences of FM on the Wirral and it will involve GPs and Pain Clinics. The group has a social and a business side.

The North London Fibromyalgia Support Group has an annual awareness day at The Royal Free Hospital. Camden Primary Care Trust (PCT) has started a pilot exercise programme for CFS patients but there is no provision for FM apart from the Expert Patient Programme (EPP). 

Members of the Reading Fibromyalgia Support Group have taken part in the Expert Patient Programme and found that all chronic illnesses shared the same problems of pain, fatigue and sleep. As a result of these classes, and with lobbying from the Reading group, Reading PCT, in conjunction with Reading Borough Council, has organised an exercise class based on pilates which is specifically tailored to sufferers of chronic conditions. The class is for people who have attended the EPP and is run by qualified instructors who also have experience in treating Fibromyalgia. 

FMA UK has printed 25,000 GP flyers on FM which will be distributed through Strategic Health Authorities and/or PCTs throughout the UK over the coming months. All GPs will receive one so there will be no excuse for any GP in the country not knowing about FM. These flyers should go directly to GPs and so shouldn't be filtered out by Practice Managers. The APPG cannot make sceptical GPs recognise FM but the Department of Health can.

Dr Holland from the North East recently spoke to one of the groups there and said that FM doesn't pigeon-hole nicely into rheumatology. Medical Research is catching up with FM. FM makes new/altered pain pathways.

Discussion of £8.5 million given to CFS/ME and how patients with FM may be able to benefit from the services provided.

The Department of Health is using the money to set up additional multi disciplinary approach treatment centres. North Devon PCT wants to bid for some of this money. In the NE, CFS is to be taken out of hospitals and treated in other centres. Money for Group Leaders training is needed to support leaders to deal with difficult FM cases that come to groups. Merseyside & Wirral has a 12 week exercise programme which many fail to complete. Jane Griffiths MP is going to ask a question in Parliament about future funding for FM. 

Discussion of Campaigning Ideas.

In the future local groups will be asked to lobby MPs either by writing to them or by attending their surgeries to ask them to attend the APPG meetings. Writing to local papers can challenge MPs to attend and take an interest in FM. MPs take notice of their constituents and should always reply to them.

Department of Transport guidelines do not list Fibromyalgia as a condition for concessionary fares. They need to be updated. Coordinated campaigns are best to have the greatest effect. In the past FMA UK has organised a postcard campaign during awareness week but stalls at markets, fetes and shopping centres are an easy way to make an impact. FMA UK's Awareness week this year is from 11th to 18th September.  It will start with the FMA UK International Conference at Imperial College London on 11th & 12th of September 2004.

Future Direction of APPG

Some APPGs get secretariat funding. It is essentially a Parliamentary forum on FM and provides an opportunity to influence government in the future. Jane will ask a Health Minister to come to the next meeting. Research done in other countries has to be replicated in the UK.  Manchester University has already started  replicating the MRI scan research of pain imaging in the brain. 

AOB

Junk/spam is causing charities' web site managers to be less effective; it slows down the administration and interferes with the running of the organisation. There is an APPG on this topic so please send evidence to your MP. 

All groups should be registered with the Community Volunteer Service. They may be able to help provide free computers for local community groups.

A local Birmingham artist, Vanessa Clark,  is seeking funding from the Arts Council and is interested in doing a video diary of FM. This could be shown at the conference as well as her art work of different installations that represent pain and other symptoms of FM.

Date of Next Meeting

The date of the next meeting will be notified as soon as a date has been agreed with Stephen Ladyman MP in response to our invitation to speak at the next APPG meeting.

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