Research

Hi had visit with rhumatolgy last week .as I was coming out of appointment a lady stopped me asking if I would be interested in participating in some research to do with lupus sLe . Through London college hospital ..my rheumatology doctor is leading it through my local hospital hopefully will be helpful and come up with some answers ..?? Was wondering if anybody else has been asked ..xx

6 Replies

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  • Could this be part of BILAG? Several years ago i agreed to join in this lupus research via my rheumatology clinic. Hospitals all over GB are involved:

    lupus.org.uk/news-events/re...

  • No I haven't but would be happy to. I haven't ever seen a NHS rheumy as once you've seen someone private you get stuck. I would like to know of anything I could be part of as we are all so different I feel they need to include as many of us as possible.

  • interesting I first saw my rheumatologist in private then he referred me to his Nhs outpatient clinic. I am still seeing him after some 20 years try and see if you could attend his nhs outpatient clinic. Ours is a long trek and can be proved expensive in the long run as it is so broad.

    Best wishes

  • Yep a possibility. Its only London. Only private initially through my husbands work. General care, and I use the term loosely through my gp. But there is the sticking point. The NHS referal needs to be local, and I have to force my gp to refer back when I need something. She thinks I get adequate care but never calls me for general checks I attend when I know I can't manage my symptoms.

    However, I would be interested in in research and have just google it my rheumy is part of the research I will ask.

  • I have been asked in the past and I help where I can, if not to help me but for those of us diagnosed in the future.

  • Yes, last year I agreed to be involved with one at my local hospital in Sunderland.

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