Important Patient Survey

Please can those of you who have been diagnosed with vasculitis, who have not already completed this survey, please take a moment to complete it. John took part in a meeting in London this week with the BSR, SRUK and Lupus UK and although they have received many completed surveys from Lupus UK the numbers are much lower for Vasculitis and Scleroderma and Raynauds. BUT please do not complete the form if you have already done so... Thank you

vasculitis.org.uk/news/pati...

Susan

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  • Hi Susan

    Following my earlier comments, I have filled in this survey in reply to your request. I have done the best I can, as still some questions are not easy to answer, with the multi choice options, and I have had to leave some blank. E. g are you struggling to cope with your illness, answers yes, no, don't know or I'd rather not say. Well a year ago that would have been a resounding yes, but now I'd say no.

    i still think they assume you see a rheumatologist with the question about whether you get enough info from the rheumatology team to help manage your condition. Anyway, I've done the best I can. I still think it's a pity there is no section where you can explain or add your own comments, if it's possible to pass that back

    Best wishes, thanks for all you and Vasculitis UK do

  • This is just a pleminary survey - this alliance with the BSR Lupus UK and SRUK is very new and is in the early stages if development. They certainly don't presume you see a Rheumatologist but most people do see a Rheumatologist for their vasculitis, there are 18 different types.

  • Done, at last!

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