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PSALV - Psoriasis Scotland Arthritis Link Volunteers.You are not allowed to view links.
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LoginAbout PSALVPsoriasis is a common condition affecting 2-3 in a 100, but still has an extremely low profile, and is much misunderstood. It can be very disfiguring, and many think it infectious - it never is. It is painful, itchy, bleeds and scales constantly. The condition is incurable and treatments can be extremely time consuming, messy and some can be smelly.
There was no charity based in Scotland, raising awareness and lobbying our own politicians.
In 1998, several people with this debilitating skin disorder and the painful connected inflammatory arthritis set up a local support group.
We had many interesting meetings with different speakers, on many topics and decided we could do more with charity status, particularly as health is a devolved issue.
PSALV was launched in early 2004, at the City chambers Edinburgh, attended by several MSPS and chaired by the late Brian Meek, who supported us, and is much missed.
As a "Scottish charity", that is founded by people with the conditions, under Scots law and based here-we feel we have a better understanding of the needs of people with skin psoriasis and PsA than charities based outside of Scotland. 'Only a charity based and founded here can call itself a Scottish charity' - Oscr, official Scottish charity regulator. This is the legal definition.
So far, since gaining charity status, in 2003 we have set up a website and we provide a newsletter for our members, with articles by doctors on different topics. We also run public info seminars.
In January 2005 PSALV held its very first briefing in the Scottish parliament for all MSPs on psoriasis and psoriatic arthritis.
Later that year we held a 3 day exhibition in the parliament gardens to mark world psoriasis day.
Over the past two years we have been lobbying the Scottish parliament to develop clinical guidelines on the diagnosis and treatment of psoriasis and psoriatic arthritis: to develop national standards of care for people with psoriasis/psoriatic arthritis; and to define psoriasis and psoriatic arthritis as chronic conditions to be included in the list of conditions exempt from prescription charges.
We have recently met with some success regarding these matters as SIGN (Scottish Intercollegiate Guidelines Network) are in the process of drawing up new guidelines for the management of psoriasis and psoriatic arthritis in adults.
Also the Scottish Government has reduced the cost of the prepay charge for prescriptions from April 1st 2008.
