Journey to the London Lupus Clinic

Yiphee - I've got my first appointment with the London Lupus Clinic tomorrow. It's been a very tough ride to get there but I did it!

I had to borrow money to go private because my GP, in thier wisdom, won't refer me on because I am already seeing a Hepatologist (seeing more specialist will only confuse things and we don't budget it - I explained it's private - GP still refused "we don't have to write private referrals")  Hmmm. My heptalogist is good at controlling my liver flare ups, but by his own admittance, he knows nothing about Lupus, or anything else that is going wrong with me, he's a liver specialist... No doubt the absence of an official referral letter will rub somebody up the wrong way...

Being raised in Australian, I am blown away by the NHS, IT IS a brilliant Health system. (in Oz they have to pay for every little GP appointment, prescrition etc etc) 

But the NHS politics and inability to diagnose internal issues (autoimmune) is mind blowingly confusing!!!

Nevertheless I am very happy to get this appoint though; even if it did take 4 years - what a war it has been

9 Replies

  • Well done! My GP also sent me to a hepatologist initially because my liver function tests were elevated while my ANA was positive, so he was convinced it must be something autoimmune with the liver. It took my hepatologist (who is great, by the way) a year if investigations before coming to the conclusion that it isn't liver related and I was able to convince my GP to send me to a rheumatologist and get a lupus diagnosis.

    Good luck tomorrow!

  • Fingers crossed ;)

  • Excellent!!!! Good luck tomorrow and keep us all posted please.

    Fingers crossed you get some answers and explanations xx

  • Hope it goes well for you tomorrow x

  • Jarrod, just interested that you prefer the NHS to the Aussie system. I've lived under/with both and I'd DEFINITELY prefer the Australian system! Seen rapidly. You can shop around. You pay for the services you want. We still pay here, of course, it's just that the payments are 'invisible'. Our 'service' is run for the convenience of medics, not patients. Can't wait for this wretched 'system' to be converted to an efficient, transparent, commercial operation. (Won't happen in my lifetime, though :-(). Ah well, we're all different aren't we, in our experiences and our opinions....

  • Hope all goes well at Tommies, they are a lovely bunch. One of the toughest things about having a chronic condition is that you have to fight the hardest when you feel your worst. So well done for getting to one of the best lupus centres in the world. xx

  • Goox luck will be thinking about you, hugs xx

  • well done i am sure you will get some answers. the nhs is very slow and sooooo dependant on who you see. i went to st thomas's but i find there is not much diffrence in treatment of lupsu just how they go about traeting you if that makes much diffrence..i try to see diffrernt specialist for example in my local hospital they have a kidney specialist who is a lupus specilaist she was the best doctor ever. know oddles of stuff. my new gp is trying very hard and i appreciate how kind and thoughtfull he has been. in my experience you just learn how to get the most from the system eventually but it takes alot of time. this site has been wonderfull. good luck i cant wait to haer your news

  • Hope everything went to plan :)

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