Sticky Blood-Hughes Syndrome Support


I've been going to St Thomas' for 8 or 9 yrs now and this is the first time I have had cancelled appointments. Spoke to consultant's secretary and she is going to ask whether she is happy for me to have two years in between appointments and will call me back.

My dilemma is that I used my insurance to see a local rheumatologist who diagnosed my fibromyalgia and he is very helpful so am going to discuss with my GP whether to transfer to his NHS clinic.

I have got my diagnosis and have been put on warfarin and provided my inr is ok Hughes is under control. I have also been told I have symptoms of lupus and it is in my notes that I can have steroid shots if I need them. So not sure whether St T's can actually do much more for me at the moment. Anyhow will see what my GP thinks.

7 Replies

Please join forces with Tim on here who has just made a similar blog to yours, I have answered his recently! I advice you however to stay in the loop with St Thomas' as it can be difficult to go back again, Moan about the appointments messing about... but stay in their system Mary X


I used to see Beverly Hunt at St Thomas' - I couldn't wait to escape..(I was young!) she kept telling me come back next year so when she was on maternity leave I persuaded the replacement consultant to sign me off...

It was a massive mistake - not only did my notes get lost (hospital & GP) for 10 years when I moved to Scotland but I have missed having the ability to ask them for advice....although they have always been good if I phone them ..even just recently 'can I take clopidigrel instead of Aspirin' would have been much easier to answer if I was 'under' a consultant...


Hi Caroline

I would be inclined to do both, and as mary says keep St Thomas`s in the loop.

I go to St T`s and have a local rheumy and haematologist plus others monitoring things (I live in the midlands).

Hope you feeling well today

Take care gentle hugs love Sheena xxxxxxxx :-) :-) :-)


Thanks folks.

Spoke to consultant's secretary and no chance of an appointment before September - consultant has said so after looking at my notes, but am going to stay on their list.

My GP was unimpressed. He is waiting to hear from the local consultant I saw privately and will refer me to the NHS clinic if necessary.



I am glad your GP is trying to help you as you wait for September to come along. Best of luck with it all, and plenty of support on here. Mary F


The NHS is trying to stop tertiary referrals for non-urgent cases and one of the aims of the lupus unit is to see patients once, then get them managed under their local authority. This has been decided by the management a year ago, but has only really been put into place over the last few months. The next year will be interesting as the old Lupus Unit will become the Out Patients centre and patients will be seen in different clinics.


Great my local Authory need a brain transplant can i order one on the NHS please !!


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