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It is very hard to find where lupus specialists are in the UK as there is no published national list as there is in the USA. The only way I know is to investigate the leading/teaching hospitals to see what their rheumatology departments offer.
Many of us in the London area ( and from other places in the UK) go to St Thomas' Louise Coote Lupus Unit which is one of the world's leading lupus centres. However they are very overstretched and under funded so there can be very long intervals between appointments and they are hard to contact in case of emergency. Many people pay for a private consultation at the private London Lupus Centre to get a kick start with diagnosis and treatment recommendations. However you don't have to wait more than a few weeks for an initial appointment at St Thomas' because they have to meet their targets. Since you are already on Warfarin and with your history it might be a relatively simple matter of getting you on the right meds and right INR to make a big improvement in your health.

Other hospitals I know of are St Mary's - Dr Colin Tench who also practises at the London Lupus Centre is based there I believe; the Middlesex Hospital; the Royal Free and University College also have connective tissue disease specialists. I do not know if follow ups and check ups are more frequent at other hospitals but that sort of information should be available from the hospitals themselves. I think St George's Tooting must have lupus specialists because the South London branch of LupusUK holds a patient information session there monthly
LupusUK could put you in touch with the regional branches.
You might also get help from the various APS/Hughes syndrome organisations and sites since it looks as if this could be your major problem.

I hope you can access better treatment than you appear to be getting right now- best of luck!
:)

Clare
 
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