London lupus clinic

[scoobydoo1]

has anyone been here and is it any good, seriously considering forking out to see a lupus specialist and hopefully get a formal diagnosis by a lupus specialist. thanks mark.

[Lily28]

Hi Mark

I've been there, this people is very professional and welcoming

They check my lupus every 6 months

My dr seems to be interested in my lupus

Which is really good .

I'm happy going there

[scoobydoo1 in reply to Lily28]

how does you going to the private clinic sit with nhs, are you joint care and who provides treatment, sorry loads of questions but need to ensure doing right thing, thanks, mark

[saranne]

I was encouraged to go by GP for a private consultation. My hospital consultants secretary faxed over the most recent blood tests because they are very expensive to do privately and I had an appointment which resulted in some tweaks of medication and a slightly different angle on things. The report went back to me and my NHS consultant and she made the medication changes and discussed the results. No major changes but I had time with an expert and no one else I see is a lupus expert! However I was def. diagnosed with lupus before I went, I had a number of odd symptoms which were explained clearly to me, so worth it. I could not go there regularity as the cost of blood tests are too high and I would prob only go back if I felt my local hospital could not help me. Hope that helps. I think you can combine the two if your local doctors do the regular stuff and you have private as an overview. Ask your doctors advise on it, good luck.

[scoobydoo1 in reply to saranne]

thanks saranne, luckily I have copies of all my blood test etc. the consultation with the lupus expert is the thing for me too, im sure I have it 100%, rhumy not so sure but I would be ecstatic if I haven't, but it then poses what the hell is it for the last 17 years.

thanks for the post extremely helpful.

[steadilymovingforward]

they were very professional when I used them

[Hidden]

My Gp encouraged me to get second opinion after my local NHS man was hopeless and annoyed my Gp with his attitude. That was 13 years ago . Dr D Cruz diagnosed Lupus ,Sjogrensand vasculitis. I continue to see him. My GP liases with him ., does all my blood tests. My other NHS cosultants liase with Dr D' Cruz as well via my GP. All my blood tests and other tests are onthe NHS. Cosultation £195.

[madmagz]

I have been going to St Thomas' for a while and have never felt better! They have been great and listen to me and when advising me talk to me not at me, they ask my opinion of what they are suggesting with my care plan and go out of their way to help me. I have appointments with the Lupus nurse between consultant clinics so that they can keep an eye on things and chat to the consultant if there are any problems. I have been a lupie for twenty years and am so glad that I insisted on this referral, people have commented recently on how well I look and I am leading a full and active life practicing my hobbies and doing voluntary work again. Steroids have been reduced and generally I would say it's one of the best things that could have happened to me going there, they are very efficient with communicating with my G.P. and any other consultants I am under too.

I would certainly recommend it and it is easy to get to too, just a short walk down the road from Waterloo East Station you don't actually have to go into the main hospital building it is right by the main entrance.

Good luck

Madmagz x

[tintin49]

I had a very quick diagnosis but I find the hospital royal free hampstead a bit ad hoc as they fit in lupus with all the other rheumatic illnesses. I wanted a second opinion so went to st Thomas's but to be frank the dr wanted to put me on really strong meds that I am avoiding at all costs.i cant even stand plaquenil makes me so achy so taking it makes me feel more depressed and fibro seems more enhanced. I was going to go private but with all the tests etc overall £800 seemed a very high price for the private dr to tell me the same thing as the nhs. all the drs have a different slant on lupus but one dreadful fact is there is no cure and most if not all the meds have very undesirable side effects. you can be feeling great then the next thing your pancreas is destroyed or your going blind or some other organ has packed up and that's not necesraily the lupus but the drugs. I cant get my head around this dreadfully painfull illness if I thought I was going to get better/enhanced treatment I would pay.

anather thing the dr that was treating me after I asked for a second opinion refused to see me so I have a junior dr now. being ill means you are at the mercy of drs and when you get better you can skip off home. with lupus you are stuck with it and sadly the whims of drs

[tintin49]

I must also add that at least one of the drs at royal free is a consultant at the London lupus clinic the nurse told me

[lizzyhannah]

Hi mark I went to the lupus clinic at St Thomas,s it was the best thing I ever did.My G.P. Told me that there was no problem asking for a referral. I live in the North East so what a journey but when I got there everyone was so lovely and I got a diagnosis within 10 minutes. Of chatting to the doctor and I didn't pay apenny.

[Petrof]

Hi scoobydoo, I believe the hospital you are talking about is London Bridge hospital, a private hospital with lupus unit. The Lupus unit others refer to is Louis Coote Lupus Unit in St. Thomas' hospital, which is NHS. I also believe that some of the reumathologists in St Thomas' also work in London Bridge Hospital. It is possible to ask your GP to be referred to St Thomas' but the waiting time will be long, however it will be free. It depends how urgent it is for you. The specialists in St Thomas' are great, not just with the knowledge but especially with the approach to the patients.

[scoobydoo1 in reply to Petrof]

hi petrof, you are right meant the private clinic, need to get this sorted once and for all and now pretty quickly.