Are there Lupus specialist about?

[Rach459]

Does anybody know if there is a Lupus specialist in the uk that deals with just Lupus rather than a rheumatologist who deals with various autoimmune disorders?

[Hidden]

I went to a private hospital in Solihull, Birmingham there's a professer there who his main speciality is lupus.

X

[Rach459 in reply to Hidden]

Did you get better answers and help? My rheumatologist is only part time so its hard to get hold of her when i need her. Do you have to pay private? X

[Hidden in reply to Rach459]

Well to be honest I went to get diagnosed, but I only saw him once then ended up going back on emergency on nhs... He is a lovely dr..

Oh yes you do have to pay private I think just for the one consultation was £220.... But then bloods tests depends what they are, are way over £100... So it is pricy x

[Hidden]

No, Lupus isn't a speciality in its own right. The main Dr 's that see patients with it are Rheumatologists and Nephrologists.

Lupus UK have a list of Consultants with an interest in and experience of treating Lupus. You are entitled to a second opinion with a Consultant of your choice on the NHS in England.

[Rach459 in reply to Hidden]

Thank you for your reply and help

[LupusAdmin3 LUPUS UK]

Hi Rach459,

Can i ask where in the UK you are? LUPUS UK very proudly funds Specialist Lupus Nurses who operate across the UK providing specialist care to lupus patients.

The other option is the London Lupus Centre at London Bridge Hospital which specialises in private care.

I hope this has been of some help to you.

Best wishes,

Hayley

LUPUS UK

[Rach459 in reply to LupusAdmin3]

Hi Hayley im in Liverpool. Thanks for the reply

[LupusAdmin3 LUPUS UK in reply to Rach459]

Hi Rach459,

The closest to you would be Professor Ian Bruce at The Kellgren Centre for Rheumatology, which is a LUPUS UK Centre of Excellence at Manchester Royal Infirmary. You will need to be referred by your GP in order to get an appointment.

Best wishes,

Hayley

LUPUS UK

[Footygirl in reply to LupusAdmin3]

Hi Hayley, just to but in, Paul ditected me to Prof Bruce but by the time I got to him in May he had begun heading up a Lupus consortium type body so he doesnt figure on their list of Docs at the Kelgren any more.

However, I did see Doctor Gorodkin. (English lady) who not only validated all my symptoms after talking to deaf ears for years but diagnosed me with plus conditions, already had Lupus diagnosis, recommended treatments and drugs and sent me away with an empty arm having given ssooo many vials of blood for exhaustive tests which further uncovered things she recommended my, then, useless GP to follow up. So, I recommend tht Kellgren and Doctor Gorodkin wholeheartedly.

If you do go, Rach, Im n St Helens, private message me and Ill give you better directions cos their helpful map etc is useless and I can save you some probs if you like.

Regards, Hayley, Rach

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Ps as guru Keyes says, they have all come via Rheumatology, well most but this Consultant was brill with me and I was at such a low point. X

[Rach459 in reply to Footygirl]

Thankyou footygirl, i will have a look into it. Do you see that doctor all the time now?

[LupusAdmin3 LUPUS UK in reply to Footygirl]

Hi Footygirl,

Thank you for recommending Doctor Gorodkin, i am glad to read that you had a positive experience. After all, this is what this forum is for, to share advice and opinions.

I wasn't aware of the situation with Prof Bruce so thank you for bringing this to my attention.

Best wishes,

Hayley

LUPUS UK

[Little-e in reply to Footygirl]

Hope you don't mind me butting in to ask but How did you get. Referral to her? I'm in Billinge so only Merseyside comes up to choose from, my GP said I can't get a referral to there because it comes down to who pays for funding so I am under a Rheumatologist at St Helens.

[Rach459 in reply to LupusAdmin3]

Thank you so much. Very helpfull

[Footygirl in reply to Rach459]

Erm long story. my Rheumy miffed I asked for Lupus referral. Had it 14 yrs diagnosed myself with helpful GP. Then referred to her as closest breed to what I needed, then. Became more ill recent years thought Id see a REAL Lupus doc. As above

I am having an appointment end of month with specialist nurse at the Man R Inf to discuss options as one good thing at St Helens, monthly blood tests, sssooo important. If Man do the same I'll swop permanently as Dr G has made an apt for next year so I am in system. Methinks she was kindly guarding against poor response from my Rheumy. Kind. Thoughtful. Right.

So Ill get back to you when I have seen nurse. My leaning is to go cos Ive never been treated with such acknowledgement of my intelligence and knowing my own body before. Priceless.

Always is a daft thing I have discovered in Rheumy docs, they are not all equal! but I would bet money, if I needd help this doc would react with more interest and speed than present Rheumy.

Red tape means, before I get confirmation of regular blood tests, my GP may have to order routine bloods, but labs differ, measurements differ (crazy) health trusts differ, GP spending cuts enter into it blah blah so I need to ensure I am boxed off with what I need before jumping off my sinking rheumy, or should that be stinking rheumy, sorry, once and for all. long answer.

Hope it helps. Always here for a chat etc. You know how to private message anytime Rach?

Love

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Ps would add, entering the main outpatients bit off putting but we are catered for down a corridor in a quiet side bespoke little clinic with the jolliest blood takers I have ever met, and my current ones are good!

Sorry you know of the online booking system? Your GP goes online in surgery, gives you a code or password you go home follow instructions to get into MRI hosp system then you book your own apt time and date very 21st century. my useless GP did it by snail mail, think he was being smarta....e but I got an appointment about 6 weeks time, at the time.

[Ketterj in reply to LupusAdmin3]

Hi Hayley,

I am also looking for a second opinion, i live in solihull, west midlands, could you please advise who would be the Specialist in my area?

Many thanks

[Paul_Howard Partner LUPUS UK in reply to Ketterj]

Hi Ketterj ,

The Queen Elizabeth hospital in Birmingham is a LUPUS UK Centre of Excellence which is headed by Prof Caroline Gordon. I believe they may be the nearest specialist centre for lupus.

[Ketterj in reply to Paul_Howard]

Hi Paul,

Thank you for your help.

Kind regards