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RSD UK - an introduction to our work

RSD UK is a voluntary non-profit making charitable organisation set up to give support to those concerned with Reflex Sympathetic Dystrophy aka Complex Regional Pain Syndrome. How RSD UK was formed, and why? What do we do?

The start of RSD UK

RSD UK was formed in September 2000 following realisation that support and information services for RSD/CRPS patients and families were difficult to find. The group had been running around 7 months when we attended the 4th RSD Conference in Eastbourne, hosted by Jean Chave. Jean announced she wouldn't be running any more conferences and and Catherine decided, after realising how useful the conferences where, to take over the running of it with the help of Dave Barton from SKIP (Supporting Kids in Pain).

Initially RSD UK was an email support group, where members could chat and discuss experiences, medications and treatments and have somewhere they could feel less isolated.

Information Website

After a few months it was obvious that more was needed; it was all well and good having somewhere to discuss problems but nothing was being actively done to raise awareness. In early 2001 our website, with information, encouragement and awareness issues went online. The visitor numbers soon started increasing and it at that time we decided to become more formally recognised.

Networking

Quite early on in our history we decided on the motto "Working Together to Stop the Pain" as it described our aims well. RSD UK work as much as possible with medical professionals and other organisations and we encourage new joint ventures where possible.

We made contact with other organisations, such as ARC (Arthritis Research Council) who now list us on their information leaflets; we sent out press releases and encouraged others to make contact with us.

Information leaflets

In August 2001 Catherine was awarded a grant from the Lottery Millenium Grants for their "Give it a Go" scheme. With the award we were able to design, print and post leaflets to GP's on a targetted basis to co-inicide with the first UK RSD/CRPS awareness campaign in the November of 2001.

These leaflets are available online to worldwide visitors or by postal delivery to those in the UK. Please email
giving your full name and UK postal address for copies.

Awareness campaigns

The first UK awareness week, November 2001 was very succesful and between RSD UK Alliance members we managed radio broadcasts, news articles and magazine space. 2002, 2003 and 2004 were also very succesful and have paved the way for us to take awareness forward. If you would like to become invovled with raising the profile of RSD/CRPS throughout the year please email Catherine for details.

Finances

RSD UK is a non-profit making organisation; employees are voluntary workers and accept no salary or other modes of payment for work carried out. We work to the lawful guides as set by the Charity Commission and will apply for grants, awards or funding as and when is appropriate.

Conferences

In 2002, 2003 & 2004 RSD UK hosted the Annual National RSD/CRPS conferences in Yorkshire. All three have been a success with an admirable programme of speakers and chaired by Dave Barton from SKIP; a full detailed account of past conferences, including photographs and write-ups can be found in our News and Activities section.

17th September 2005 is the date for the next RSD UK conference. Please email for details.

Parliamentary links

In June 2003 and November 2004 and Catherine attended Parliamentary health sub-committee meetings to discuss pain issues relating to the NHS, DoH and Department of Works and Pensions with emphasis on timely treatment of the patient. The outcomes were those of recognised need for patients to receive care at the appropriate time, to the approriate standard and all pain services should be part of a National Service Framework. Dr Foster reports that formed the basis of these meetings can be found on our downloads page or on the Dr Foster Website

Charity registration

RSD UK gained charity status on 17th October 2003. Full charity details are available on our Charity Page.

Research

We endevour to help the cause of RSD/CRPS research in the UK by way of making our members aware of ongoing or future research. Details of known research will be made available to RSD UK members and it is for each member to decide if they wish to take place. We hope to be able to make such research available on this website and would be interested in any feedback.

Many studies surrounding the whats and whys of RSD/CRPS have been inconclusive due to small subject groups studied. Collectively we can help researchers build up statistically significant research models.

We are aware of three research studies that are ongoing and further details are available via the News and Activities pages.

Research fellows needing RSD/CRPS subjects can telephone Catherine on 01484 643458 to discuss how we may be able to assist.

Please note: We do NOT give any member information to third parties for reasons of research or any other matter. All information held by us is used within the guidelines set down in the Data Protection Act 1998.

IN THIS SECTION

Who are we?

Our Patron

Objectives and Mission Statement

Charity Information

Support our work

RSD UK Alliance

Working with RSD UK

Contact details



applies to the name RSD UK, the logo and all graphics on this site, they must not be re-produced without written permission from the author