London Lupus Centre help please

[Chris1802p]

Hi can anyone help?

Last year I was under Natasha Jordan privately at the London Lupus Centre at London Bridge after 2 positive Lupus Anticoagulant results (only 7 weeks apart though so no firm diagnosis) but she suspected autoimmune disease from my symptoms and blood results and She put me on hydroxychloroquine.

I have just tried to make a follow up appt with her as I have all sorts of symptoms lately, to be told she no longer works privately and only works NHS from Addenbrookes, which is totally out of my area.

Should I try and see a different specialist at London Lupus Centre? Would they have my history? Not sure what to do now...

[MaryF Administrator]

I would ring them up and ask who you can see instead, Many doctors who do fully understand Hughes Syndrome/APS do work out of there, although I think appointments may be a little bit limited currently. MaryF

[Chris1802p in reply to MaryF]

Thank you, I will

[Lulu0186]

Hi Chris1802p,

I may be a little late in this reply but I can personally recommend Dr Arvind Kaul at London Bridge. They will still have your notes from previous appointments. I was one of Prof. Hughes few remaining patients that he kept on with until he stopped seeing patients completely a few years ago and he recommended Dr Kaul continue my care and he was spot on with that choice. I have, over the 10 years that I've been a patient there, spoken with several other doctors for urgent advice when either Prof. Hughes or Dr Kaul have been away and they have all been fantastic in any case.

I understand that they are offering video appointments but now also face-to-face for urgent cases. I was there just last week and despite the Covid restrictions and regulations in these rather strange times we have, it was most reassuring to have a doctor who is realistic and supportive.

Best of luck and take care of yourself.

xx

[Chris1802p in reply to Lulu0186]

Well, that’s a coincidence. Another poster pm’d me recommending Dr Kaul, and I saw him a week ago. And you’re right, he is fab! I have another post about my meeting with him. Thanks for your reply x

[Lulu0186 in reply to Chris1802p]

Really glad to hear that! I literally owe my life to London Bridge. Will check out your other post too!

Take care x

[Hayleyrose28]

Hi

Sorry to hear your consultant is no longer working privately.

I would personally look on their website and get a feel of a few consultants (a number of them list APS as a specialism), then ring the office and ask a few questions. I would try to speak to Sally if you can because she’s always been incredibly helpful for me in the past.

As said below, I’ve also been offered virtual appointments or face-to-face. In my experience, the usual wait times for my consultant have come down from 4-6 months, and I was able to book an appointment for 2 weeks time.

Good luck x

[Chris1802p]

Thank you for replying- I did get it sorted and I have another post up explaining what happened x