Advice on lupus centres

Is Guys Lupus centre the only Lupus department in London or near to Essex, just not happy ,going to Dr tomorrow asking for a second opinion , and is there any recommended consultants. if I'm allowed to ask,I've been told one minute lupus then fibro and it's driving me mad,plus always different consultant , or is it worth paying to go private , and if so where? Thanks

8 Replies

  • I went to St Thomas's in London. I was diagnosed with Lupus with my doctor here on paper and no one told me. When I went to London I was only diagnosed with auto immune hepatitis. I felt so ill I knew something else was going on. At London I was told I had MCTD and RA. Then I went to a doctor in Sheffield who was supposed to be very good. There I was told I had lupus, Sjogrens, auto immune hepatitis and fibromyalgia.

    Even though lupus was on my medical file for years not one doctor told me.

    I think if you went to a few different doctors they would all say something different.

    If you live anywhere near Sheffield I recommend doctor Akil. He also has a lupus nurse.

    Good luck X

  • Thanks you unfortunately I'm London

  • I asked for a referral to Professor Beverley Hunt at the Louise Coote centre in London. She is NHS and was excellent. Primarily I saw her for my APS but also diagnosed Lupus (which I'd known I had, yet no-one locally had done the right tests). She is extremely thorough.

  • Thanks just come back from my GP and happy to refer me to London just need to make decisions on who to see, thanks pleased your happy with your Professor.

  • Hi chaimee,

    There is another lupus centre in London, at UCLH. It is under Prof. David Isenberg. Perhaps you could ask for a referral for a second opinion there?

  • Thanks Paul Dr has refer me to guys hospital 7 week wait not that bad, after all my bad luck with appointment with rhumy ,today two hours over run appointment for neurology for my neck and head scan results taken two months ago to be told they are lost ,seem to be unlucky or is that the health service to come.

  • Hi Chaimee, I am pleased you have got a referral to Guys. It is so frustrating when you keep being given different labels. I too have been referred to Guys by my consultant who has looked after me for the last 6 years. How did you manage to find out the waiting time for the referral? I have been waiting for a week so far and no appointment has come through. Good Luck.

  • O so late in replying only just seen your note ,our dr uses a book booking screen the lady phoned me as said it would be that length of time ,have now been back for my second appointment ,at last yes I do have lupus,hope you managed to get referred.

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