After my appointment yesterday with my rheumatologist, I'm being referred to St Thomas's / The Louise Coote Lupus Unit (which I believe is actually now based at Guys).
Can anyone tell me how long I will be waiting for the appointment? He basically sidestepped answering any of my queries/issues with the referral so I don't want to be hanging around forever before getting anything sorted!
Many thanks!
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jojo-lianne
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I don't know how long the wait is now but I was a patient there for 9 years before moving back to Australia - they were fantastic and it will be worth the wait especially as I believe a lot of patients from there were being referred back to their gp's about 18 months ago. Good luck
I have been in their care for nearly 8 years and I had my appointment there yesterday. Yes, they are now based in Guys hospital and they are amazing. It is definitely worth waiting for. The waiting time may be quite long unfortunately. When I was referred there it took about 4 months but that was 8 years ago, it may be quite different now. Good luck.
Hi, I'm a regular at Louise Coote Unit - St Toms, London. The unit is understaffed with a lot of patients. Don't expect to be seen on time. Sometimes waiting over by at 2/3hrs. The nursing staff are great, although I don't always get to see my assigned doctor. Recently they've moved to Guys hospital & I have an appt there mid Dec so I'm not sure what to expect. Next wk, I need to go Guys for blood tests due to extremely low haemoglobin levels (it will be my 1st time there). A lot of other out patients travel from other parts of the country. Do you have far to travel from? This Lupus Unit is one of the best in UK so it's a relief to talk to meds who understand & know about Lupus. I hope your 1st appt there will be an uplift one x
I had to wait approx 3 months, and up until recently had been a patient for 3 years. They are excellent, and do many tests that your regular local consultant do not.
I decided recently not to attend there anymore, as the journey and waiting times in the clinic left me totally exhausted and exacerbated my bad headaches, leaving me with after effects which took me days to get over!
Also, I found my local rheumi consultant was so brilliant that she did everything for me that they did at Louise Cootes !
But I'm sure it will be worth the initial waiting time for a appt
Good luck.
The rheumatologist who referred me from Guy's said it would be "soon", but the appointment came through for 7 months later. I rang to check if this was right and they said yes, then out of the blue I got an earlier appointment for 3 months after the rheumatology one. They saw me and have given me up a follow up for 6 months later. The unit has now moved to Guy's from St Thomas' but this is just a change of location. They are very helpful and thorough.
I will definitely give them a call if it seems like a have a long wait. No point seeing my own rheumatology dept. until I've been seen in London as they won't do anything until I've had the referral!
Hello, congrats on your referral. I too was very recently referred to St Thomas after seeing my GP on Fri 28th Nov, this Friday I got a phone call confirming my appointment for Jan 12th, couldn't believe it, as I had been told it can be 15 weeks.
Hi JOjo, did your appointment come through? How long were you waiting and who is it you will be seeing? I was referred about four weeks ago and my appointment is next week. I wanted to see PRof D'Cruz but have been assigned to PRof A Cope in rheumatology. Can anyone tell me if he is any good please? Specifically with seronegative lupus??
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