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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.
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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
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