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Sticky Blood-Hughes Syndrome Support
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Any advice welcome

H i live in Somerset do go through my GP to ask for a referral? I have many symptoms of MS and APS but cannot get a diagnosis, Im on lifelong warfarin for factor five lieden (i had blood clots in both lungs 22yrs ago when i was 31, since then i have had TIA's numbness stumbling rag doll fatigue,memory problems etc, would love to get to the bottom of it, I am an RMN and struggling with work now have a very supportive team around me and have dramatically cut my hours, any help or advice would be very welcome. Dawn xx

7 Replies

Hi Dawnie

To get an NHS referral you need to go through your GP, yes but to see Prof Hughes in London, for a private referral, no you can book that yourself through Kim at the London Lupus Centre.

If you are wanting an NHS referral you should try to see Prof McHugh at the Royal National Hospital for Rheumatic Diseases in Bath.

Where is Somerset are you? I'm in Midsomer Norton and we have started a Bristol/Bath/ West Country APS support group. I will send you a PM about our meetings.

Dave xx


Thank you very much for yor reply, I will make an effort to come along i live in Burnham-on-sea Dawn


Hi Dawnie.

Great, we would love you to join us.

D xx


Hello, Dave had said all the right things already to you, including lifting the right professional in our area off our data base. however if you GP will not refer, perhaps an appointment at London Bridge, although you can take a cancellation sometimes with Professor Hughes, if you are wanting it quickly, (long wait otherwise), you could also see Professor M Khamashta, who works with him closely and has a shorter list there. Many of us have had to do this to get our NHS care back on track if unlucky enough to have a team or GP not quick on the uptake with a disease they have not read up about. If you feel you could persuade your GP there is plenty on our charity website or we could find you more medical papers or films. All the best MaryF x


Well said Mary.

Dave xx



Your GP need to attend your request, if not get another GP. They think they Know best but they don't, so be persistent.

The Mineral Hospital in Bath is very good. I'm seen by professor McHughes team and they understand our problems.

The only thing is that our problems won't disappear they might get better with medicine but one way or the other we have to cope with them. Right now i have an aching swollen elbow, and I know it will go but this is part of what i have to put up with.

BTW I live near Bath, Shoscombe. We have APS group meetings about three times in the year so you should come.

All the best,

and remember to succeed one must be creative and persistent.



Well said Dani.

I have sent Dawnie details of our group meetings, so i hope we see you Dawnie.

Best wishes.

Dave xx


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