My latest update on my battle to see Prof D’Cruz.
The GP I used to be with phoned me Friday (I think) and I had a good moan that I wasn’t automatically being referred back to Prof D’Cruz. She was my GP at the time of being tested for APS. Apparently the law has changed and I need to see a rheumatologist in my local hospital who is the only person able to refer me back to St. Thomas’ so a waste to the NHS in my eyes. Absolute disgrace 😡
I had heard that, but understood it was only for new cases?
May be worth asking Prof D'Cruz secretary, how to get back to see him?
Hi, I spoke to his secretary last week and she seemed to agree that it should be my choice. She mentioned about seeing him privately but I can’t afford to and I shouldn’t have to. I’ll wait until I see a rheumatologist in September and go from there. Fingers crossed he/she will know nothing about APS and refer me back to Prof D’Cruz.
That is really awful, I hope you can fight your corner, do check over on the right hand side of the forum to see if there is a local specialist in your area who understands this disease, if so you could perhaps insist on seeing them while you fight your corner back to St Thomas's. Best of luck, we all understand. MaryF
A disgrace is too mild!
Write to your MP! If they truly care, you will get a response & help.
Thank you that’s an idea I haven’t thought of but I’ll definitely do it!
It’s NEVER easy, is it?!
Seriously, has anyone ever read on here:
“Oh my goodness! I felt unwell for the first time ever last week, so I went to my GP. He immediately knew what was wrong with me, bless him! He sent me to the Rheumatoligist in our particular postal code. This particular woman is a genius! She diagnosed me straight away, but of course wanted to run more specialized blood tests to confirm, and to check for additional / rule out additional conditions. How thorough!
I didn’t even have to travel far and it was all on the NHS. Everything operating exactly as it should- precision! Like our British train system!
Right- Jolly good! Must dash- off for tea and scones with friends!”
Ahhhh..... I think I see your Union Jack flying in the background and I hear your nation anthem playing...
Well, at least your country has the London Lupus Centre! We gave very good providers also... finding them is the trick... and getting a unified team of like minded physicians from different disciplines is... do you have the saying in England...” like finding hen’s teeth?”
“Like finding a needle in a haystack” is probably the most common one.
I’ve just found the MP’s e mail address and will send an e mail in the morning. In fact I’ll raise another problem my partner and I are going through while I’m at it.
It’ll be quiet so I’ll be able to concentrate more!
I hope you found the quite time you needed this morning to email your MP.
Hoping both your and your partners concerns will be given the consideration the MP should give them.
My laugh for the day. The U.S. isn’t much better. Have to jump hoops to get a referral
Nope, we are having the same struggles in many ways as our friends in The UK.
I’m not having trouble with referrals, ( my poor GP’s hands are tied- our local hospital has said they are not equipped to handle my severe case of APS) but I am having trouble with my insurance company denying certain brand prescriptions that my specialists prescribe.
One good example is brand statin livalo. My GP actually wants it over pravastatin. He thinks it be less likely to have any interaction with my INR.
Insurance denied it.
Anyway- I won’t take any more space on stereo lovers post- but yes we are definitely having our problems in the USA.
These problems are exactly the same- just gift wrapped in different paper with a different coloured ribbon.
The bottom line remains the same: proper education across the board about this diseases- leading to earlier detection and and proper treatment by more than just the rare doctor would be the fulfillment dream, but goal and duty.
Very funny 🤣 but also not funny at all, if you know what I mean??!! 😱
I do... I def know what you mean...
I just say: Good Luck with your e mail!
Thanks so much, I’m not expecting anything to come from it
My APS was actually diagnosed by Prof D'Cruz, after the Thrombosis/Heamatology Team at the same hospital failed to diagnose it.
Prof D'Cruz said that he doesn't treat APS on its own, only if the patient has Lupus or other rheumatological condition with it. I was discharged back into the care of the Thrombosis/Heamatology Team, just what I wanted, not! 👍🙄
Judging by other people's experiences I've read on Sticky Blood, G&StT hospital do not want to take on any new patients, both in the Thrombosis and Lupus clinics. It's not good enough but what can you do?! 🙄
I've decided to move away from G&StT and seek APS care elsewhere.
I truly hope you have more luck🍀.
Claire 🤞
So in that case I must have Lupus because he diagnosed my APS
APS Symptoms
APS specialist recommendation for London Bridge Hospital
Find a cure for APS
aps postive at last.
