St.Thomas London : Can I ask if anyone... - Hughes Syndrome -...

Hughes Syndrome - APS Support

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St.Thomas London

JemJJ
JemJJ

Can I ask if anyone goes to St.Thomas lupus clinic in London please? My lovely doctor was so helpful and supportive but doesn't think she'd be able to refer me cross border (I'm in Wales) because there's an APS specialist in Newport. This is the specialist who won't start Fragmin until after 7 week viability scan though and who I've not been able to talk to since my last loss. I'm going to try to get referred privately if not on NHS. Can I ask if you were referred through the NHS or privately and if privately did you have to pay for all the medication prescribed? I just want to talk to someone who knows about APS because I've been told so many different things now I don't know what to believe.

9 Replies

I live in Wales and asked to be referred to St Thomas' for a 2nd opinion. That was about 18 years ago, and went just for the opinion, then continued with their recommendation. Hope that works for you. Best wishes

JemJJ
JemJJ in reply to KerryA

Thank you! Did your GP or specialist follow their recommendations afterwards?

HollyHeski
HollyHeskiAdministrator

Hi, I was referred originally from Hertfordshire, local heamatologists were not well informed and it was their suggestion, once moving to Devon I continued travelling to my appointments, at moment they are all by telephone.They are the leading European centre for Lupus and APS, as far as I know they still take patients from outer state. Please note waiting times will be long, as normally 6 mths so with covid will be longer.

I think you need to see an obstetric APS specialist now, rather than a haematologist? Have you researched for one locally? (Presuming you are seeing haematologist locally?)

PM me if you want details of obs APS consultant at Tommy's?

St Mary's in London also has a leading APS maternity unit.

JemJJ
JemJJ in reply to HollyHeski

Thank you! I've spoken to Tommy's but their cut off age is 42 and I'm now 44 :-( I wish I'd know about them years ago when I was trying. I don't have a haematologist or any specialist here at all. In pregnancy I was eventually just sent to early pregnancy unit. I'll look at St.Marys too thank you. We didn't expect to fall pregnant this time as we'd given up so it was a miracle, just didn't work out. I just want to know that I'm doing everything I possibly can if it ever happens again.

I was referred from Northamptonshire. And they were very helpful but after initial couple of appointments. They wanted to discharge me as said a long way to travel so now that’s it. I’m discharged!!

JemJJ
JemJJ in reply to teresahunter

Oh that's a shame! Surely others travel further? I'm glad they helped you though to start with.

teresahunter
teresahunter in reply to JemJJ

It was definitely worth the initial couple of appointments so I hope you get your referral!

KellyInTexas
KellyInTexasAdministrator

Can you call Natasha Jordan at addenbrooks? I know it’s NHS. She was my rheumatologist- but she knows an awful lot about the pregnancy clinics. Is there a private one in that area also? Sorry, as I’m in Texas I’m a bit lost ...

I was diagnosed and ended up spending a month at St. Thomas. Dr. Hughes' team are the specialists at the clinic. For almost a decade I've been seen by Dr. Breen and her team. They have taken good care of me and are patient with my symptoms. Sometimes I see her associates but thru the pandemic we've had phone calls. I live in West Sussex but I travel in. They saved my life as I went into hospital with 8 PE's.

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