10:11am Tuesday 19th February 2008
By Ian Ross
LACK of understanding by GPs about scleroderma was one of the concerns raised by a survey of sufferers.
The scleroderma questionnaire was sent out by the Alsager-based Raynaud's and Scleroderma Association, which is led by its founder Anne Mawdsley.
Some 70 per cent of people responded to the questionnaire, with 1,050 of the 1,500 forms sent out being completed.
The main concerns raised by people were fear of the future, lack of understanding by GPs and junior doctors, frustration at not being seen by a scleroderma specialist and lack of counselling facilities.
"We're correlating the comments from sufferers, which will give doctors treating patients an excellent insight into people's feelings, how they perceive their care and understanding by health professionals, the service they receive and how they are treated," said Mrs Mawdsley.
"There were many positive comments which were encouraging, and others which indicated there is still room for improvement.
"It is hoped this information will be of value in improving services and care for patients in the future."
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