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    Sticky Blood-Hughes Syndrome Support

    Hello

    Hi everyone. I have not been on here for a while, as back and forwards to hospital appointments. After been discharged from St Thomas's, I have been seeing Prof Hughes privately, I have now been referred to see a rheumatologist in Hull a Dr Elaine Baguley so hoping things will be okay when I see her. Apparently she worked along side Prof Hughes. Sending good wishes to everyone on here. 😊

    20 Replies
    oldest • newest

    Thanks for the update.

    Good luck.

    Dave

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    Thankyou Dave.

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    Hi I'm glad you have been seeing someone and I hope that they continue to take good care of you in Hull please keep us updated.

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    Thank you. I will keep you updated.

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    Hello Bernie

    I hope all goes well with Dr Elaine Baguley at Hull. Please can you let me know whether you'd recommend her so we can add her to our APS specialist directory? Naturally, I will write to get her permission before putting her name out in public.

    Thanks :)

    Kate

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    i will do Kate.

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    Hi Kate. I did go to my appointment at Hull Royal Infirmary, but I did not see Dr Baguley on that appointment. I saw her registra. The registra seemed a bit bewildred as I had a lot of information to give. The staff was nice. I am due to them again soon.

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    Thanks for keeping me up to date Bernie.

    I won't write to Dr Baguley yet as you've only seen the registrar and they will move around every few months or so. However, at least you have educated them :)

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    Thank you Kate. I thought the same. I should be getting another appointment soon.

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    Well done on your progress and indeed for sticking up for yourself and others... a woman after my own heart! MaryF

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    Thank you Mary. It was very political with what happened to 600 plus patients at St Thomas's. I have recently read, Prof Khamashta is leaving to set up a clinic Dubai. another loss to the NHS.

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    Yes and I notice many patients in the Lupus forums and Hughes Syndrome ones are extremely unhappy, and being discharged again, or told in some cases they do not have the condition! MaryF

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    It's not good leaving patients with no care. They should take it to the Ombudsman. The patients who are been told they do not have the condition, should challenge the Trust re- misdiagnosed. I challenged them at St Thomas's and they was found to admit it was a very grey area saying patients did not have it. I put it to them that they had mis diagnosed me then.

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    From what I am hearing a number of patients intend to!

    MaryF

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    Oh that's good Mary. The more who take it to the Ombudsman the better.

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    Following with interest... I see Dr Sangle next week after Prof Khamashta being my usual specialist. I am told he is lovely but I do worry about being 'misdiagnosed' and wonder how people actually challenge these decisions... When we have no qualification to give us a 'bit of clout' so to speak.

    Thank you for being such a forthright and proactive person, I'm sure this helps many of us who don't feel strong enough to do so!...I hope you get the treatment you need without a fight xx

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    Hi. DR Sangle is good. I used to see him. It was a struggle but I did it for other patients and myself, as patients rights are been flounted. The government is controlling the Trusts. The doctor who wrongfully discharged all the patients ,who I reported as mysteriously retired from St Thomas's May I add he had, never met me. Stand your ground and don't let them say you are stable, that's the tact they use. I have never been stable with my conditions. Hope it all goes well for you.

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    Thanks very much Bernie, that's good to know that many people have found him good. I still have not had a reply from the nurse which is disappointing but never mind, I see Dr Sangle on Thursday.

    I think because all my symptoms and blood tests aren't 'severe' they're a bit wishy washy but fingers crossed.

    I'm very glad to know that particular person has left the hospital.

    Take care

    X

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    Good luck with it all. For warned, is for armed.

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    Good luck xx

    Reply

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