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Question re: St thomas

624 views 13 replies 6 participants last post by  greenhaggis 
Hello Cassie
If you opt for private treatment you have to go the London Lupus Centre private facility at the London Bridge Hospital. Many of St Thomas Louise Coote Lupus Unit doctors work there too and the others are all very well qualified. I presume that famous Dr Hughes who used to head the St Thomas' unit handpicks his team at the London Lupus Centre
Referrals aren't required for the London Lupus Centre as far as I know.

I should have thought that you could make a very good case for being referred out of trust considering it's not an exaggeration to talk about no adequate care being available within the PCT. It's a question of convincing the PCT that there is a case and your GP and MP can be instrumental.

Of greater practical concern IMO is how you can best be helped right now and I'll respond to your other post.

Many hugs
Clare
 
I forgot to mention an important consideration. Getting diagnosed properly is clearly essential but it is not an end in itself - it's the start of a whole new phase that lasts the rest of your life. Hopefully things will improve enough so that you rarely need specialist help.
St Thomas' is stretched to the maximum and it is notoriously difficult to get in touch with them if need be although they do their best. Even GPs have a hard time. The impracticalities of being reliant on specialist care at a great distance are obvious. It's hard enough even when there isn't a large family to be organised and of course there are the financial considerations of travelling so far

The closer specialist care is to hand the better. A number of people go to St Thomas' once a year but have they have local specialists for emergencies and ongoing treatments. This is the ideal.

You do have a good caring GP which is an essential element to getting the best care although he doesn't seem especially well informed even for a GP. A concerned GP can be educated though. To all intents and purposes your local consultant services are nil for the foreseeable future.
I am pretty sure I have heard very good things about Bath but I can't remember who said that. You could ask on the Find a Doctor section or try the search function using 'advanced' model
I think I would get to the London Lupus Centre for further immediate advice and treatment suggestions if I possibly could but work at getting an urgent NHS referral to Bath (or maybe Bristol?).

All the best

Clare
 
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