Sticky Blood-Hughes Syndrome Support

should i pay privately to go to st T's?

I have recently done a blog re recent hospital admission and been dx with hughes since 1990, but with so much happening to my body of late despite being under a rheumatologist and neurologist i was wandering if it would be worth paying for a private consult? i dont wish to tread on anyones toes but at 47 i want many fine years ahead but always worry what docs might think of me to seek more advice

kathy xx

10 Replies

IF it was me and in the same position as you. I would its your life why shouldn't you, they would if it was them.

Love Karen xx


Hi Kathy,

who are you seeing ? Are you seeing anyone under the NHS at St T's because my only point would be if you you are you may be paying to see the same Doc.

If you were looking to go private it would be to see Prof Hughers at The London Bridge clinic. If it is really something you want to do and you not getting the right support you have to do what is right for you.



Hi , you should go to see Prof Hughes, if you are paying private. He is a lovely man. Best wishes. Bernadette


Yes, Paddy is right - you can't pay privately to go to St Thomas' as it's an NHS hospital. If you want to go privately the London Lupus Centre is the place to go - it's based at London Bridge Hospital - 0207 234 2155.

There are some good doctors there (most of them tend to do one day there, and the rest at the NHS hospitals). However, it is quite expensive, so ring them to find out the cost of a consultation first and don't forget to ask how much they charge for blood tests - you should be able to use the ones you already have.


Thank you karen, bernadette, paddy and kate. Thanks for the clarification and contact details. Will wait until next app as apparently neurologist will be seeing me soon with mri results and see what he says. I dont think i fit into the catagory of raynaurds disease but then im guessing raynauds phenomenon is something different? and vascular phenomenon?

Having had raised intracranial pressure issues with blood clots in the past i fully understood all that but this is certainly more detective work needed to piece all symptoms together...

thanks kathy xx


This is exactly the path I took, and it did make a difference to the way my family has been perceived locally! Mary F


It was about £200 when I last went-but the best £200 I ever spent. I'm usually anti private but, as you point out, life goes on whilst we are waiting. I was advised not to have any tests done there, and Prof H didn't suggest any be done there. A letter from him to your GP may suggest tests and treatment done on the NHS.


Thank you Mary & tim i will contact monday as had odd left arm and back sensations again last night despite warfarin and aspirin on board - all i know is it is not right but difficult to fully described which leads to anxiety.

now to get up and out to enjoy the sunshine ;)


Well I have been thinking of going privately, as waiting around here, its a little nightmare. It takes ages for anything to be actioned. Is it true that if you go private, it interferes with NHS?

I am a little what confused.

I just want someone to say whatever clear cut etc. I saw Prof Hughes when I lived in London many years ago, and then eveything okay until splenectomy and things downhill.


If it helps, I see Prof Hughes occasionally privately, which I recommend, (he diagnosed me originally) and he suggested I get a referral to St T's, which I did, and see Prof (sounds good doesn't it) Khamashta there. They both know I see each other and are both very happy about it.

So I would say that no it does not interfere. Officially the NHS say that if you go privately all other treatment thereafter for that condition won't be covered, but the reality is that it does not happen. This situation is usually when somebody has say cancer and pay's privately to get drugs that are not available on the NHS. Some PCT's in that situation have then turned around and said that the patient can't top up their care in that way.

I believe that the present government is not really being strict with this because anyone who does use the private system is actually helping the NHS out. It takes people off of waiting lists and saves them money. In my view it also would be a bit hypocritical given their views with giving patients more choice which includes using private hospitals for some treatments!!


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