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APPG

Minutes of APPG meeting 151107

ImageAll Party Parliamentary Group (APPG) meeting on Fibromyalgia
on Thursday 15th November 2007
at the House of Commons, Westminster, London.

Present:

MPs
Rob Wilson MP for Reading East – Chairman
Shailesh Vara - MP for North West Cambridgeshire and Shadow Deputy Leader of the House of Commons
Betty Williams - MP for Conwy

FMA UK
Pam Stewart, Gerry Crossley, and Jean Turner

MAB Members
Dr. Kim Lawson, and Dr. Ernest Choy

Polkadotgals  http://www.polkadotgals.com/index.htm
Biance Embley, Emma Levick,  Lindsey Middlemiss, and Vicki Walden

Rob Wilson welcomed everyone to the APPG on Fibromyalgia.  There was a short AGM where the MPs re-elected Rob as Chairman and Nick Palmer MP for Broxtowe as Vice-Chairman.  Shailesh Vara was elected as Treasurer and Betty Williams was elected as Secretary.
Rob then introduced Dr. Ernest Choy to present his EULAR 9-point plan on the treatment of Fibromyalgia.

Dr. Choy explained that he was Chairman of the European League Against Rheumatism (EULAR) charged with developing guidelines for the management of fibromyalgia.  The group included rheumatologists, neurologists, physiotherapists, a patient representative and pain specialists involved in the management of fibromyalgia.  This group reviewed the evidence that treatment helps people with fibromyalgia and came up with a 9-point recommendation that it is hoped will be implemented throughout Europe.  There is a lot of evidence from high quality research that effective treatments are available for fibromyalgia.

Both Shailesh Vara and Betty Williams asked many questions about fibromyalgia and its symptoms, diagnosis, age range, gender and current treatments.

When asked if there were any national guidelines for the treatment of fibromyalgia patients, Dr. Choy said that the EULAR guidelines are the first to be developed and have only just been published.

Rob then introduced Dr. Kim Lawson to present the FMA UK application to the National Institute for Clinical Excellence (NICE) for universal guidelines for the treatment of fibromyalgia.

Dr Lawson said that an application had been made to NICE to produce guidelines so that diagnosis and treatment of fibromyalgia would be standardised.  At present it depends on whether a GP refers a patient to a rheumatologist, a psychologist or pain management specialist as to what treatment that patient receives.

With regard to the process of submitting a topic to NICE, the submission of the suggestion was easy and straight forward but the progress of that submission is difficult to follow.  We have been told that we are not allowed to communicate with them to ascertain the progress of this topic so we have no idea when a reply will be received.

Rob Wilson said that FMA UK might not be able to ask questions but the APPG will write to NICE to find out what is happening and when we can expect an answer.  If that doesn’t work Rob will ask a parliamentary question about it and then NICE will have to give the government the information. 

There followed a very proactive discussion on how to raise awareness with both decision makers and the general public.

Rob Wilson suggested we think about Campaign Post Cards.  He said, “If an MP gets enough of them it makes them think that it is something they aught to be taking an interest in.”  He went on to say that if every MP received 30-60 cards, firstly they would have to answer that communication, so would have to take time to think about it and secondly it could be used as an opportunity to get them involved with the APPG because there is a lot of resistance at present as MPs know very little about fibromyalgia and don’t think it a problem in their constituency.  If MPs are not interested we have to MAKE them interested.  Also MPs will only respond to their own constituents so this is not something FMA UK can do in a mass mailing. 

[We are a large group of people who are affected by FM so let’s get shouting.  FMA UK plans to instigate this Post Card Campaign as a run-up to the Coffee Morning to be held at the House of Commons for International Fibromyalgia Awareness Day on 12th May 2008.]

Rob also said that people should write to their MP asking them to ask their local PCT what they are doing to support fibromyalgia patients because again it gets the interest of the MP and forces them to contact their PCT which forces the PCT to think about fibromyalgia treatment.

[It would be a good idea to write separate letters for the above two ideas then the subject wouldn’t get confused and each MP would then receive two letters about FM.]

When the question of how many fibromyalgia sufferers there were was raised, Dr. Choy said it would not be difficult to work out a figure.  Rob then said that once he had this figure he could possibly put down an Early Day Motion (EDM) in Parliament.  However, again, this would require enough MPs to sign up to this EDM to make it possible.  If MPs knew how many fibromyalgia sufferers there were in their constituency it could make them more supportive. MPs will only take notice when it is high awareness and it’s fashionable.

Rob mentioned that an MP had received a visit from one of his constituents.  As a result this MP sought Rob out and spoke to him about FM.  This MP is now signed up to the APPG.  Rob’s message is ‘It does work’. 

There have been instances in the past where MPs have said that they have signed up to the APPG but whose names do not appear on the list.  This could be because they may not know that they have to sign up every year for their names to remain current.

When asked if Rob could let us know when questions on fibromyalgia were asked in the House, we were told that we could sign up to http://www.theyworkforyou.com and ask to be informed whenever fibromyalgia is mentioned in the House.

The APPG is an awareness raising group for all members of parliament in England, it doesn’t involve the Scottish Parliament or the Welsh Assembly. What is needed is an equivalent lobbying body in those two areas.  [However when anything of importance happens, FMA UK will do its best to ensure the information is passed on.]

Dr. Choy mentioned that in America, fibromyalgia has a higher profile which could be because a couple of wives of Senators have fibromyalgia.  Rob wondered if any MPs had family members with FM and when his office sends round the minutes of the meeting they will ask that question.

Prior to the APPG, the Polkadotgals held a photo shoot outside Parliament to promote a calendar they are producing in order to raise the profile of fibromyalgia.  Rob suggested that we send all MPs a copy of the calendar and that a critical fact about FM should appear on every month.  MPs will look at that as they don’t receive many calendars. 

Although the two presentations give us hope for fibromyalgia treatment in the future, we cannot stress enough that all these things take time to filter through the various systems, so please don’t expect anything to happen overnight or worry your GP at this stage.  As soon as we know more we will certainly keep you informed.

This was an extremely positive and proactive meeting that resulted in several actions being proposed.

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