Sticky Blood-Hughes Syndrome Support
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Another discharge from St Thom's letter.

I fear that a few of us will be receiving these as mine arrived today . Net message is that they don't have the capacity to treat newly diagnosed patients so the stable ones are being discharged back to their GPs and more local hospital clinics. Not impressed! Whilst my GP is very helpful, I don't think she would consider herself knowledgeable on the issues. As for my local hospital, last time I was in I walked out at the weekend because I could see I was heading for trouble by staying in as an in patient with the lack of care and understanding that was evident. I am also supposed to be on their Rheumy books and seen every 12 months but they haven't been in touch for years!

St Thom's do say that GP can seek advice from them but from my letter, any such arrangements are not specified and as the GP is only getting a copy letter, I doubt they give more info there.

There is no doubt in my mind that this is primarily down to government cuts and them not funding St Thom's driven. I think this is so short sighted, I can just imagine the bill that will result from some of us now finding ourselves back in hospital because we will not have been monitored properly. My useless Tory MP and the govt minister can expect a letter in the strongest terms.

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Yes, that is exactly what you should do and it seems that the Doctors running the Clinics are not even aware what their administrators are being told what to do either!

Im so sorry you have this added burden to deal with. x

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Yes and 'Cameron' said the NHS would not be touched! Claire Rayner, our not to recently departed UK agony aunt, did say she would come back and haunt Mr Cameron should he interfere with he beloved NHS... time for that promised visit I think. On a more serious note, sorry to hear of the stress you are having as a result of this letter. Mary F x

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I am so cross I wrote a really long reply and it crashed.

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at least you have a medical center in the UK that knows how to work with Hughes - most here in Canada have no clue

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Yes, I really hope that across the world we can change this, but in some places the knowledge is so limited- I do feel for patients outside of the UK. I see there is some change coming with some contact details on here: - bottom left:

apsaction.org/

Mary F x

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Wow - Mary,

Many thanks for the above link. When I was first diagnosed (1/07) my hematologist told me so little was known about APS that it would be like having cancer in the 1920's. I think perhaps he was right, but it appears that hopefully things will change - and quickly. The more recognition - the faster the movement!

Take care!

Happy New Year!

Leigha

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Thanks for the support guys. Having suffered with what I now know to be Hughes, and done so since the mid 70s, it was a tremendous relief to find out about the name it had been given and attend St Thoms, to finally appreciate that all the problems I had 'imagined' were typical Hughes and feel confident that I was at last in safe hands.

I rather think it has not been a clinical decision as there were a few things hanging over from last time, and my visit was not an annual one (initially) as they wanted to see me again sooner than 12 months. A cancellation and new date has almost made it an annual review though.

I think all of those who are fortunate to have had a referral and be on the St T's books (and I recognise how lucky we are- if we weren't I may not care so much) we ought to monitor the extent to which we are being abandoned and see if group action might be appropriate.

I cannot believe that this decision is driven by clinical reasons, there is still so much that is unknown about Hughes that we bring to the forefront through our follow ups.

This is what being safe in Dave's hands means, nothing else.

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Is it worth getting a suggested template letter together so we could all write to our local MPs?

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I feel quite worried about this trend to seemingly abandon us.

While I was under Prof Hughes care at ST T's he suggested I be cared for nearer home as I travelled from Yorkshire. I agreed but when I attended my local rheumy he simply said, and I quote, he knew Graham Hughes when he was nobody. He disagreed with his protocol. I never went back. Fast forward several years and I saw a haemo at the same place who said the same regarding his protocol and wanted my INR to be 2 as opposed to 3.5.

I am very fortunate to be able to afford to see the Prof privately but what of the future, when he is retired, will anybody else be in agreement with his ways?

I have yet to test positive for Hughes, but have only had one test in 2004, The prof has asked my GP t test again so I pray this time it will be positive.

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May be it's time to Email Prof Hughes. As all the work he has done for patients, is just going to be wasted. Contact your MP and make them sort it for you. There is an under currant motive going on with the Government. We all need to stand up to them, as we need the care, and they have a duty to care. All the best . xxx

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I have emailed St Thom's at the address given on the letter asking for decision to be reversed and giving brief reasons why and expressing the hope that I will not need to resort to more formal means of having the decision reversed.

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I can understand the rationale of discharging patients who have been stable for many years and who just come along to see a Doctor who just says "hi how are you, how are things going. Great just continue what your doing etc". However perhaps they forget that those patients are stable because they do their bloods and they check them over and are quick to notice any changes so can adapt medications when things are noticed which is why they are so stable.

Secondly, many patients have fought long and hard to get referred. If they are discharged when they get a deterioration in their condition, do they really want all the hassle of fighting GP's and PCT's to get another one when they are so ill? Yes Prof D'Cruz says they can be seen quickly but thats in a perfect world with an understanding GP who is prepared to fight for their patient and get them there, as I said in the other thread not all GP's come equal. I dont know what the answer is but I really hope you get your decision reversed now.

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