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Sticky Blood-Hughes Syndrome Support
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Referal to St Thomas's

I was wondering whether to ask for a referal to St Thomas's. My Gp is ok and willing to learn along with me but every time i get admitted to hospital i see a different doctor and it depends on whose on call which disapline you gat, Ive had gynochologists and gastro pods, I have lots of questions and my gp trys gamly to answer them. What I want to know is am i entitled to ask for a referal and how do i go about it. Thanks take care


10 Replies

Hi Margaret

yes definately. You are entitled to a referral, would advise you do if seeing multiple cons too. I was seeing haematologist, rheumatologist, gastro, respiratory, surgical etc. Not surprisingly they were all passing the book. Was a bit of a merry-go-round, one which I was so glad to get of, i'm dizzy enough as it is. My haematologist referred me thank goodness.

Still see haem and resp but not so many visits or stays in hospital since going to st t's.

Push for a referral hon.

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


Hi I also had referral to St T's my firsts visit wasn't too great, but have heard good stories. Also they re-did mt glyco2 beta protein test which ths time came up as a negative :( - in fact on my way there now as I type to see what happens next- to say jam a little apprehensive is an understatement!!!!

Good luck Margaret on your referral

Warm smies




I have been to my gp today to ask for 2 referrals. I have just lost my 7th baby (this on at 16 weeks) so want to go to St Marys recurrent miscarriage clinic but I also want to go to St Thomas's for my generic care both of which are in London. I am from the east midlands and my go has told me he'll try but the pct might say no. If they say no I'll have to stick with useless drs here and borrow money to pay for private treatment at St Mary's if I am going to try for another baby. I hope you have a smooth referral process hunny as we all deserve the best and most up to date care!

Hugs kate xxx


Oh Im so sorry. Heres hoping you have your chance soon xx


Kate, I thought we could now choose where we were treated, and you should not have to pay, that is outrageous, and if they say that I would suggest you try your MP - I have also lost 7 babies so can empathise with you - I know that doesn't make it easier, other than to know we understand - I wish you everyluck!! and good health


Lesley :)


I thought we had the right too until I asked the question. My GP informed me that if you are already under the care of a 'specialist' it becomes more difficult and area PCT's get grumpy about letting you leave the are.. Probably money based! My GP has just called me to say he had a meeting with the other Dr's at the surgery and they think it's worth a go as our PCT is clamping down on referrals for cosmetic surgery so fingers crossed mine sneeks through under the radar and ASAP!!.. We really should have the right to choose huh!! If we can get the best care though choice surely we'll cost the NHS less in the long run?!?!?!?!

K xxxx


thank you all for your replies I will speak to my GP and see what happens


Hi Margaret

I was diagnosed by Professor Hughes with borderline aCL antibodies and Sjogren's. After I'd seen him, my GP at that time sent me to a rheumatologist at my local hospital who was completely useless and I only ever saw her twice. I saw the registrar once and then a GP with an 'interest' inSjogren's who trashed all my symptoms and didn't make a record of the new dose of thyroxine (I would have thought that was pretty important!) I was on even though I kept telling her my dose had changed.

I had a lovely GP (she's sadly left) who was willing to refer me to St Thomas' without question. I did give her the name of the consultant I wanted to see which was just as well as she said she did not know who she should refer me to.

I was told in advance by one of the adminstrators here, Kate, that St T's were operating a policy of seeing people once and then referring them back to their own local hospital.

Most of my symptoms are mild (I have never had any thromboses) and the consultant I saw at St T's did tell me that he didn't need to see me again even though I told him my local hospital was useless! I wanted a referral because

I have had problems with my stomach and have been feeling extremely unwell over the past couple of years and it has escalated in the past few months.

The consultant at St Thomas' was very thorough and said that I would be recalled if there were any significant abnormalities in the blood tests.

I assume that there have been, although I don't know yet what they are, as I have been recalled for an appointment on Thursday.

So that's my experience of referrals and you can see that I have attended appointments with one of the local rheumatologists before being referred to London and my GP didn't have any hesitation in referring me. With the severity of your symptoms and your bad experiences, I'm sure St T's will keep you as their patient. Your health and well being have to come before doctors worrying about getting into trouble with the PCT. How pathetic! I would give your doctor the name of the consultant you want to see just so that the GP has no excuses to delay referring you!


You can but ask.........I am seen at St Thomas and had no trouble getting a refferal and to be honest it has stopped all the mixed message going to and from consultants and GP as everything goes via St Thomas now. They are wonderful, understanding and quick to carry out all the test needed and will if need offer help and advice over the phone.

Good luck with the refferal



I was refered to various local hospitals rheumys, cardios etc all useless. I even landed in a gout clinic once needless to say I don't have gout.

I finally got refered to St T's but saw a locum. The following time I spotted Prof Hughes in the chaos and walked up to him, he ushered me into an office had a quick chat and started a new regime. I then needed to make a change and could not get an appointment for love or money, back then it was over a year waiting list. I was lucky and I knew a person who saw him privately and she handed him a letter from me which he acted on. Lucky me.

I have now seen him once privately by far the easiest route, though expensive. I was lucky a second time as a locum GP we got once worked with him before she was a GP and she rang him for me. Wow 2 lots of good luck.


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