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FMA UK October 09 Newsletter

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Category: Newsletters

Published on Wednesday, 28 October 2009 08:25

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CPWG on Chronic Pain at the Scottish Parliament
There was also a representative at the Scottish Parliament in September at the AGM of the Cross Party Working Group on Chronic Pain. This provided an update on the Pain Champion Dr Pete Marshall’s progress. He spoke about the work being done in creating a Managed Clinical Network (MCN) for Chronic Pain. This MCN would allow a network of specialists in different fields to work together to help benefit patients.

Benefits Action – The Green Paper
The Green Paper on Shaping the Future of Care Together has caused great concern amongst fibromyalgia patients. The Green Paper proposes that some disability benefits may be abolished (possibly including Attendance Allowance & DLA), and the money handed over to local authorities, who will then provide the care they deem necessary. FMA UK strongly objects to these proposals, and is encouraging all interested parties to protest.

One way to do this is to join the Benefits and Work campaign by completing the petition on their website: http://bit.ly/4NIvv . Another method is to encourage your members to write to their MP. It is important to do this before the end of October. You can also sign the petition on the number 10 website which can be found here: http://bit.ly/2bTC9o

Although government minister Phil Hope has said recently that “DLA is not under threat”, the update at the benefits and works website still urges action as there are still some conflicting messages. You can find out more information from Benefits and Works on the latest changes here: http://bit.ly/eqZGB

The European Network of Fibromyalgia Associations (ENFA)
The European Network of Fibromyalgia Associations now represents eleven European countries and FMA UK is an active participant in their meetings and events. Previously, meetings have been held in various European cities, but, to cut down on the expense, regular Skype (internet telephone) conferences are held. Pam Stewart is our representative at these meetings.

Trustee Meetings
In order to cut down on expenses the members of the board regularly keep in contact with one another via monthly Skype conference calls. This allows important business to be discussed between face to face trustee meetings. Trustee meetings are held in Stourbridge 3 times a year.

Office
The Stourbridge office continues to be staffed 5 mornings a week by Chloe, helped out on many days by volunteer Laura. In the last 18 months the office has sent out over 4000 posters and nearly 15,000 awareness flyers. In August 418 individual information booklets were also sent out. The office can be contacted for merchandise orders or admin enquiries on 01384 895002 or This email address is being protected from spambots. You need JavaScript enabled to view it..

Website
With the growth of the website it is being redesigned by Des to provide better organisation to the growing content that we feature, but this is progressing slowly due to pressure of work. The new design will improve functionality for the website as well as making it more accessible and we hope to launch it soon

Conclusion
FMA UK Board of Trustees would like to take this opportunity to thank all of those who work tirelessly to support the Association in their work to raise awareness of the condition with members of parliament, medical professionals, the general public and to provide support for people with fibromyalgia and their families. Without your input the association would not be able to provide the level of service that it does.

We hope that you will find this information informative and we look forward to hearing from you with any feedback and about what you have been involved with in your own catchment area.