Anyone with a lupus specialist they love Surrey/Berkshire/West London?

[ShannonB]

I'm struggling at the moment so you may see a few posts from me here. I'm sorry in advance and appreciate the help. My lupus isn't very well managed and I would say probably hasn't been under control really since about 2018. I've had frequent/ongoing flares with very rare periods of quiet. My rheumatologist knows me well (which is positive) but 1) can't prescribe any biologics/mab drugs due to the way the NHS trusts are structured and 2) really is out of ideas for how to help me so just keeps throwing high dose steroids at the problem.

I'm a bit fed up of feeling unwell and willing to pay for support from someone privately if I can't get insurance coverage --but what I want is someone that will really listen and look at my situation holistically and offer some new perspective. Anyone know anyone like this? I appreciate any recommendations.

I'm also still shielding as have zero covid antibodies so need to find somewhere not too far from home, so need someone who works not too far from Surrey/Berkshire or SW London ideally.

Thank you in advance.

S

[Frances_UK]

Dr Arvind Kaul is your man. He's in SW London at St George's and has a private clinic at London Bridge. He specialises in lupus and CTDs and he's fantastic.

[panda60 in reply to Frances_UK]

I echo that -l have APS (sticky blood), signs of lupus and now inflammatory arthritis. See him at St Georges - it is a very busy clinic; I see him twice a year and get a 30 min appointment. There is a specialist nurse as well and she is extremely helpful.

[StormySea]

I too see Dr Arvind Kaul, like you I was really struggling and saw him first at London Bridge then managed to get referred to him on the NHS by my GP, so I now mainly see him at St Georges. He is busy but it really helps knowing that you can see him quite quickly at London Bridge Hospital if needed. Wherever you end up going, I do hope you find the support and help you need.

[ShannonB]

Thank you StormySea Frances_UK and panda60 --it's really helpful to hear your feedback and interesting you all recommend Dr Kaul. My story is a bit more complicated than I explained above because I have two rheumatology teams -- one local in Surrey who I've seen for about 15 years and can see both privately and through the NHS and then ALSO Dr Kaul (!!) at St George's.

The local one, who knows me and I can see more often, is the one who can't prescribe MABs and also loves steroids. I was referred onto Dr Kaul at one point in about 2019 because of this issue of how trusts are structured. But I've only seen Dr Kaul 2 times in 4 years, and neither time did I have long with him. It takes me an hour to drive to St George's and my appts get rescheduled over and over and over. He never got to the point of really understanding me well enough to help. And he and my local rheumatologist always disagree about the right way forward which is super frustrating and complicated.

I don't know if I try to see Dr Kaul as primary and also move my insurance to him (if that's possible) so he can get to know me and actually figure out how to help, or if I start over with someone else. I am encouraged that you all have had such good success with him and speak so highly of him.

[Frances_UK in reply to ShannonB]

Ah, that's complicated. I'm not sure what the answer is but can sympathise as I was really messed around by St George's with cancellations too, and seeing different consultants who never got to know me or understand me. Over one period I had 5 consecutive appointments with 5 different consultants all in the same department! I had seen Dr Kaul once and he was much better than the others so I requested him as my new consultant. They agreed, but when I saw him he said he wasn't running that clinic anymore and I couldn't see him in his main clinic because he now only sees lupus/CTD patients. Very frustrating. So I ended up being sent to yet another consultant, my current one, who I don't get on with very well.Sometimes I think starting fresh with someone new is a good idea but personally after seeing 7 different rheumatologists now (a couple were locums covering maternity leave) I just want some stability so I stick with one I don't like.

[bathouse]

Hi

So sorry to hear you are having a difficult time. I only see Dr Kaul and self fund privately, he is worth every penny. He has got to know me and my situation quite well, I have just got back from seeing him today.

I find the whole NHS referral system stressful, you wait months, they change the dates, you get there and dont see who you thought you were seeing, you are rushed, not listened to and generally I come out feeling upset. I feel sad writing this about the NHS, but that has been my experience of NHS rheumatologists.

I had an hour with Dr Kaul today, answered all my questions etc.

Can Dr Kaul prescribe the drugs you need privately? If they help you could then try and continue on the NHS?

Look aft yourself

Sue x

[ShannonB in reply to bathouse]

Sue thank you. I think I will try to see him privately and maybe with a bit more time with him (and more frequent visits) he will be able to support me better. I love the NHS too but feel like you describe my situation. It's pretty upsetting when you aren't feeling well and everything flares up and down. Glad to hear everyone feels so positive about their experience with him as at least I already am part of his patient list.