Contact:
Mr Ashley Medicks
Address:
Plascow Cottage
KIRKGUNZEON
Dumfries
DG2 8JT
Telephone:
01387 760 567
e-mail:
-
SKINSHIP (UK) WELCOMES CALLS FROM ANYONE WITH ANY KIND OF SKIN PROBLEM
During the making of a documentary for the BBC on the subject of skin disease and its effect on sufferers, we visited the Dead Sea in Israel. Ein Bokek is a resort famous for its treatment of psoriasis and, to a lesser extent, eczema. People from Germany, Austria and Denmark are sent there on their health insurance schemes for free!
First timers arrive at this resort, typically nervous and embarrassed at the thought of walking into a closed-off solarium, where they know they are going to be surrounded by mainly naked people with bad skin! Within minutes, however, everyone is made to feel not only welcome, but also the most relaxed and comfortable about their appearance that they have felt for a long while. To see so much in the way of others with different diseases and differing amounts of the same disease as you is peversely comforting. Being able to walk around the entire resort wearing appropriate swimwear in a very relaxed fashion as well as being able to join in the electric atmosphere of the resort's night life is, for all those lucky enough to have been, the most empowering and invigorating experience imaginable!
Ever since I took my own extensive skin disease (mycosis fungoides) there in 1987, I have been obsessed with the thought of how we could replicate the incredible feelings of warmth and togetherness so evident there, back here in the UK. Skinship (UK) was established as a charity with exactly these thoughts in mind.
However, we have rather a big problem to overcome. We have taken hundreds of calls on our helpline from people who, once they have heard an outline of our plans to establish an effective national support group network here in the UK express great enthusiasm for them. The problem is that when when we have spoken to the existing patient support organisations about their experiences regarding local groups, they have told us the same story. On those occasions when such groups have been set up with the best of intentions, they have all fizzled out reasonably quickly. Why is this? We have put this down to the way that the majority of 8 million or so UK skin sufferers feel about their situation. To expect someone who is also stigmatised, marginalised, ashamed, embarrassed and consequently suffering loss of self esteem and confidence to wish to attend a local group, no matter how well organised it is, is, at present, unrealistic.
How can Skinship possibly hope to overcome this hurdle? We firmly believe that the desire to overcome the stigma and shame and to improve upon the current public perception of, and reaction to, skin disease and disfigurement is massive. Simply everyone we have canvassed on our Helpline endorses this. 8 million skin sufferers in the UK alone is an enormous amount of latent potential and power! We are convinced that as long as we push all the buttons in the right way the floodgates will open and the years of loneliness, anger and frustration that so often accompany skin sufferers will begin to melt away. With the help of our patrons Ben Elton (who has psoriasis), Dr Mark Porter (supporter) and a very famous and well-loved public figure (who also has psoriasis) we have plans to hold a National Launch Day. If we make the biggest possible noise on that day, all of it targeted at skin sufferers, their families and friends, telling the story, not only of the Dead Sea, but also how we would quite easily translate all the positiveness into activities to be held here in this country, we feel that we stand a chance of creating a defining moment. This will take place as soon as we have the funding and logistical support we will need.
Should we be successful, our local groups will be set up on the back of a wave of support and enthusiasm. They won't be just bunches of people sitting around talking about skin disease. We will actively encourage groups to begin to do those things that we currently find very difficult, if not impossible, such as visiting swimming pools or leisure centres. The more the public gets used to seeing us, the less they will stare! People do not stare at the familiar. The groups will be designed to be run autonomously and there will be no membership fees!
Additionally as part of our launch day activities we plan to advertise the appalling lack of resources and training across the whole field of dermatology here in the UK and give people an opportunity to sign their names and return them to us. If 10 percent of UK skin sufferers were to do this that would be 800,000 voices shouting for a better and fairer deal. What a political mandate that would give us!
To sum up, this is a radical and some might argue, controversial proposal aimed at easing the pain and ending the shame of millions of people at a stroke. For such as sea change to occur, even with goodwill riding on the back of the aspirations associated with the millennium, we need all the help and support we can get! Should you agree that we do stand a chance of succeeding, I wonder if you would be kind enough to drop us a line, saying as much. We would be most grateful.
