st thomas

[roymelt]

hi alot of people get refered here, if i went what would i find out different,as im in leicester

[MaryF Administrator]

Hello Roy, They do have some real excellence in terms of the history of the condition and research units that have at times been attached to this, also other overlapping condition. Also the high volume of patients they see with this condition, however you have a valid point, if somebody has had the correct training and is up to date, then this perhaps it not necessary.

For me it was the mixture of rheumatolgy, haemotology and of course the Louise Coote Lupus unit, (although I believe this is currently being disbanded currently). Their world expertise can also I think offer some authority back to other regions of the UK that perhaps do not operate with the same knowledge. For me although I have still failed the APS, test, clinical diagnosis off Professor H, himself.. they did pick my Lupus up last time i was there, something not picked up or even thought of where I live! To nutshell this, a number of the top medical doctors/professors who have written research papers have come through that hospital, and some are still there. Hope this helps. Mary F x

[taffydaffy in reply to MaryF]

I was in the University Hospital for Wales 4 years and was never ever believed I was the clinic joke My husband took the Prof and his underlings to a tribuneral as evey time they picked up my file they put it to the bottom as I was to complicated they told me that pains in my belly were all in my mind and sent me to a shrink 3 mths later I was in surgery my Gall bladder had fused into my liver Mr G Hughes DX me also if it wasn't for that lovely man I would not be here now I think that the clinic in St Thoms was very careing as we have nothing in Wales

[jessielou]

Hi Roy

I live in leicestershire but close to the south derbyshire border so have been seen at Derby hospitals, haematologist referred me to St Thomas`s cos they were struggling as like many others with aps I am complicated.

St Thomas`s diagnosed me with Aps, Lupus symptoms overlap and fibromyalgia, they also discovered very high cholesterol and low vit D, they prescribed Plaquenil and vit D also recommended Gp prescribe pregabalin, all of which are starting to make a difference. I do take a bucket load of other meds including Warfarin.

Am now on 6 monthly review appointments at St T`s and monitored by rheumy and haematology at Derby.

I don`t know what the Leicester hospitals are like but only got sorted by going to St T`s.

Hope you well today

Take care gentle hugs love Sheena xxxxxx

[tim47]

St Thoms is the NHS centre of excellence for Hughes it seems. We don't seem to see any other such centres get a mention here so one presumes other hospitals cannot match St Thoms.

[paddyandlin]

Tim

I do not think its matching i think its a case of that information on if there are other good areas have not come to the fore ground this is one of the biggest issue on an illness which is not well kown and you have a centre for excellence at St Thoms i think we all would be happy if are local hospital was not so un informed but we hope that will get better as more info and things like this forum get out to more people helping them to give the information to there local doctor.

Paddy

[daisy11]

Having lived in London some 20 years ago, ST T was my hospital, I did see a professor Cranston who was lovely and then I moved away, because I have lots of problems with Lupus, APS, ITP, PBC, Peripheral N, stroke (TIA) etc, I get to the consultants and they tell me you are so complicated. This is when I felt more guidance concerning my health issues, my GP is so understanding and she found that not alot of the departments were actually talking to each other, ocasionally she will get a letter letting her know what is happening, the only department communicating was Heptology and then although they were going to all get together, it never happened, so hence my referral. It is good to go somewhere where the professionals have a wider experience I feel that I am going somewhere. Yes the professionals are lovely here in South West, but find that they have no experience of a complicated person. I got more knowledge from the Anaethetist (sorry can't spell) who helped with my op, he was so lovely.

Anyway even a referral can reassure you that someone is helping you and not being on the back burner so to speak. When the nurses take blood for blood tests, and I tell them my medical probs, I say APS and they have no clue whatsoever let alone ITP etc.

Today feel better, and hope my INR is going up to right level 3.5 ish!!! Yesterday felt terrible. Funny heads!!!!!

[tim47]

Paddy.I hope anyone attending another hospital with a good reputation will let others know about it through this forum.

It seems clear that St Thom's, being a leading centre, can be a victim of it's own success- hence the long waiting lists. I could do without the journey but I'm afraid that of the two departments at my local who might be expected to know about Hughes Syndrome, one thought it was just checking INR levels and that it was a mutual waste of time, and the other knows a bit more but really hasn't got a clue what it can involve.

[paddyandlin]

Hi Tim,

That is the one good point about having the Hospital Reviews on this forum you get to hear about those Hospital that are informed and those that are not and also get to see how they change if they change. I sorry you having issue with your locals but this is going to be an ongoing point, you may want to contact kate at HSF and see if they have a local doc that has a good understanding of APS.

Paddy