St Thomas hospital : When I was first... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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St Thomas hospital

Suejane profile image
3 Replies

When I was first diagnosed I was lucky to see Beverley Hunt on referral from my local GP. Ive now moved to Northumberland and haven’t been to see Ms Hunt for several years.

I recently asked my doctor for a referral and she advised that there would be no guarantee that I would get a referral, as the healthcare service here has to apply for funding for this to happen.

Can someone tell me if this is the norm?

I would love to go down to see the team and to find out if anything has changed in the 11 years post diagnosis.

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Suejane profile image
Suejane
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3 Replies
Ageingfemale profile image
Ageingfemale

Ooh blimey! I realise now how lucky I am with my gp. I initially saw a haematologist locally who said she thought I had APS and so sent me to Guys who see me regularly. I asked to see a rheumatologist and my gp said well nobody up here (Warwickshire) seems to know much about APS so who would you like to see. I suggested Dr Kaul at St George’s London and he said fine and referred me straight to him. Now they want me to see a neurologist and dr has again referred me to London.

Suejane profile image
Suejane in reply toAgeingfemale

Lucky you. I guess it depends on who you see and how world (patient) weary they are! 😀

MaryF profile image
MaryFAdministrator in reply toSuejane

If they won't refer you there, and they may if push hard enough, then we do have specialists listed over on the right hand side of the forum under 'pinned posts' and also on our charity website: ghic.world/ Best of luck. MaryF

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