APPG FAQ on FM
What is the message from the APPG?
Recent e-petitions on the No. 10 Downing Street website have raised the question of treatments and the government responses have indicated that it is up to each Primary Care Trust (PCT) to decide priorities for their area but, without clear national guidance, fibromyalgia mostly slips to the bottom of the list, if it is considered at all.
Rob Wilson, Chair of the APPG on Fibromyalgia said that “The response [by the Government] is symptomatic of the challenge we face with the whole campaign. The Government can fob us off until the cows come home unless one or both of the following occur:
1. We pressure our local MPs individually to encourage them to join the fibromyalgia campaign.
2. We persuade the media to take an interest and highlight fibromyalgia.”
Is my MP a signed up member of the APPG on fibromyalgia?
This is a question we are often asked and one that is difficult to answer. As explained in Q1, each APPG must have a minimum of 20 parliamentarians from both the government party and the official opposition and the names of these 20 can be found at http://www.publications.parliament.uk/pa/cm/cmallparty/register/memi301.htm. We do not have access to other MPs who may be members and the best way to find out if your MP has joined is to ask them.
What is the purpose of International Awareness Day Coffee Mornings?
The Coffee Mornings which are held on May 12th each year are not APPG meetings. Their purpose is to invite as many MPs as possible to attend to convince them that we need their support to push for better diagnosis, management and research into fibromyalgia. This is the reason we need a lot more MPs to attend as without their help we will not have such a strong voice. Of course we need sufferers to attend as well to speak with the MPs as it is important for us to get our message across to help them understand what it’s like to live with fibromyalgia.
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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.
