FMA UK
Election 2010 - Vote for fibromyalgia
The election will have an effect on events and issues affecting fibromyalgia and some of this could be positive if we take the opportunity. If the election goes ahead in May it would be pointless having our parliamentary awareness event on International Awareness Day. Rob Wilson MP has suggested a Tuesday in June at about 11.30 am as the best time. He would get a health minister to attend and he agreed that this would be a good event to launch the proposed Integrated Care Pathway* for fibromyalgia.
We need to lobby parliamentary candidates and after the election MPs will have to sign up to the All Party Parliamentary Group (APPG) on fibromyalgia again! To help achieve this and get them to the awareness event in June we have discussed the following plan of action:
- To ask groups to invite their MP candidates to an event or meeting.
- To provide a letter with FMA
- Ask MP candidates to sign a pledge as part of the above actions saying that they will sign up to the APPG and attend the first awareness event.
- Have the pledges sent to FMA
Study to discuss your views on living with pain and working life
Would you be willing to discuss your views on living with pain and working life? Researchers are looking for people living with pain to discuss how it might affect the ability to work and sickness certification. This will be at your convenience; you can be interviewed either face-to-face or over the telephone, or participate in a local focus group.
You might want to discuss experiences with your GP and employer, the new fit note, and benefits. We need to know more about how these issues are negotiated to improve the system. All data will be kept confidential and all reasonable expenses paid. If you are interested in finding out more, and are 18 or over, please contact the study co-ordinator, Elaine Heaver, at the Centre for Pain Research, University of Bath.
FMA UK Trustees March 2010 Newsletter
Welcome to the second newsletter from the trustees of FMA UK. Below we have outlined what we have been doing over the last six months.
Trustees
As a result of the recent resignation of Roger Leadbeater, there are now just 4 trustees with the following responsibilities:
| Pam Stewart MBE | Chair |
| Des Quinn |
Vice Chair and Webmaster |
| Janet Horton |
Benefits Helpline |
| Gerry Crossley |
National Helpline coordinator |
The trustees will seek a new treasurer as soon as possible and would welcome applications from volunteers with previous financial experience..
Fibromyalgia media coverage
The Guardian carried a cynical article on whiplash injuries by ‘Dr.Crippin’ on 2nd March. The article ended by saying: “Family doctors in the UK usually find that patients who have no objective signs of physical injury, but still present with persistent symptoms that they relate to "whiplash", often have more subtle and possibly psychological problems. They may even be on the slippery slope to "fibromyalgia" – whatever that is. There is any amount of bad medical science upon which both doctors and patients rely.”
DLA and AA safe for one parliament
Thanks to the enormous outcry led by various charities including FMA UK, disability living allowance and attendance allowance are safe – for the course of one parliament. You may remember our article about the threat to these benefit.
Following the publication of the National Care Service white paper in March the government now say
We have long said that we would protect everyone currently getting DLA and AA in cash terms in any reform of the social care system. We continue to believe that this is essential.
May highlights from Fibromyalgia Focus
When you are first told you have fibromyalgia you obviously want to know as much information as possible about the symptoms, possible therapies and how it will affect your day-to-day life. Information on the Internet can be overwhelming, especially if you don't know what sites to focus on. Often, a good book is just what you need.
This month meet the person behind that classic FM book Living with Fibromyalgia. Christine Craggs-Hinton shares her personal story and tells us what inspired her to write one of the first patient's books on FM in the UK. Living with Fibromyalgia is about to be relaunched, fully updated with the latest research and therapies for FM, so now is a great time to purchase a copy and get all the facts about FM presented in an easy to understand format.
Subscribe to Fibromyalgia Focus to read these articles and more.
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