What do I do now?

Hi all I saw Dr Sangle months ago in place of my usual consultant Prof Khamashta...(.I already know I have APS as this is why I saw Prof Khamashta a few years back.)

I had to stress to Dr Sangle about my fatigue and hair loss etc and that although I am not suffering as awfully some are with worse symptoms etc, that this has affected my life and my attendance at university and my ability to cope.

Dr Sangle diagnosed me with Lupus and said he'd put me on Hydroxychloroquine.

It took me having to ring up weeks later and actually chase up to get my consultation letter following my appointment, as my GP couldn't give me the Hydroxychloroquine without the letter. Anyway... The nurse got my prescription up to me and my letter was sent out.

In the letter Dr Sangle has not acknowledged any of my fatigue or hair loss issues and has not even stated he diagnosed me with Lupus. I feel it has been completely disregarded in the letter content and actually states NO CLINICAL MANIFESTATIONS OF LUPUS... I was extremely upset and very disappointed with this and can't even fathom out why he hadn't put my diagnosis in or my symptoms.... Yet states I'm to be on Hydroxychloroquine??

I've emailed the nurse...no reply...Nothing new....I've left a message for her on answer machine... No reply.

I want my diagnosis stated in writing and my symptoms acknowledged... I've really struggled this year and my grades and ability to cope with things have nosedived.... My bloods taken that day were 27 or something like that for antiDsDna compared to previous borderline/mild positive results.

I've had a couple of mouth ulcers and sore nose inside since then and my wrists sometimes ache now along with just one finger (odd?)....I feel like he's took no notice of how I've been feeling.

What can I do now....I really felt relieved after him diagnosing me....then when I read his letter I was very shocked and actually a bit disgusted.

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9 Replies

  • Write a letter to the doctor directly, setting out the date on which your consultation was and the things that were discussed with you at it, including your diagnosis. Then attach the letter he's sent to the GP and draw attention to the contradiction between that and what was discussed on the day and ask for the record to be set straight and a new letter to be sent to the GP with the correct diagnosis. Stress how important this is to your health and say that you'd hope he'll be able to do this shortly so that you're not left unsupported by a lack of diagnosis by the medical profession. Give your details again and say that they can contact you by email or mobile if they have any questions.

    Don't delay - even if he chooses not to respond, you have now created evidence that you have raised concerns with his diagnosis and there's nothing better than evidence created as contemporaneously as possible.

  • Thank you, I did email the nurse as soon as I realised the content was lacking and had no reply but do have the email I sent.

    I will do that thank you ... Is that better than contacting PALS would you think?

  • In this case you shouldn't complain to PALS without first trying to resolve directly with the doctor. The email to the nurse is irrelevant because she won't dare bother the eminent doctor with what she might see as a moan, so the guy might not even get the email and the nurse has no authority to do anything about the problem anyway.

    You may also consider the possibility that his secretary had typed the letter wrongly and he hadn't checked it before going out. If you go in all guns blazing for a 'simple' admin error, you'll be perceived as a troublemaker. Why shoot yourself in the foot at this stage?

    The most effective way at this stage - in my view, of course- is a letter to him. Then, depending on what he's doing/saying etc, you can chose to complain, visit or whatever.

  • P.s. Be as respectful as you can in your letter and leave the emotion out of it. Stick to the facts and politely ask for the situation to be resolved swiftly.

  • I'm sorry to hear things haven't gone well with your appointment. I've had the reverse at my local hospital when I saw the cardiologist there where I ended up in tears when he asked why I thought I should be there let alone go to a&e my GP sent me. When he saw my ECG readings he changed the way he spoke to me and when the letter arrived you'd of thought someone else had written it. I'm wondering if the email link isn't working I've tried emailing the nurse at guys had no reply either. Hope you get a better response from him xx

  • Thank you leecylou, I found Dr Sangle to be lovely... Even the Dr I saw before they sent me in to see him was lovely... But I initially found it difficult to get heard... Then they did, and I give them their dues, they sent me to see Dr Sangle as I wasnt happy about going all the way home and nobody taking heed.

    They were thorough and respectful.... That is why my 'after care' so to speak has disappointed me.

    To diagnose someone then not mention it at all, even say the opposite... Is baffling. And dangerous if I dare say so....it seems crazy to say I need Hydroxychloroquine but not say why.

    I have the nurse email anyway, I don't use the link so that is not to blame.

  • Will he even get the letter? Or will someone else deal with it?

    No, I don't want to kick up a total fuss I can't be bothered ... I just want people to do their jobs properly, im sick to the back teeth of chasing up other people's mistakes and stuff like that its got me stressed to bits....I had to really be firm about the whole consultation in the first place to get them to take heed of what was going on.

    I'm just so sick and tired, it's stressful and it's my health....I feel like I have enough to try and cope with .

    Thank you

  • It is stressful years ago I tested positive for ana and dsDNA and for years told unlikely to be lupus. 12 years later I'm at a new doctors surgery who picked up on my breathlessness and were worried about my heart within 3 months had had various heart tests locally and had myopericaditis and was asked if I'd ever heard of lupus as that could be the cause. The obnoxious cardiologist in my local hospital thought I should be referred to a rheumatologist as I knew of guys I wrote to them and they advised I should be seen in the lupus clinic there. I've been put under Dr Sangle but have been seen by two wonderful Drs and then professor D'Cruz who has said its likely and probable that I have lupus and I've been prescribed hydroxychloroquine amongst many other heart tablets etc. On my prescription it's says sle. It's hard not to let things get to you this year has been a tough one so far for me as with all of the members on here. I try and be as positive as I can although it doesn't always work. I was advised to complain about my previous cardiologist but I just didn't have the energy. Take care and keep us to date with how you get on xx

  • Bless you.... I'm very sorry you've been through such a struggle.... And I agree and empathise with the 'havnt got the energy /can't be bothered' feeling about speaking up....Sometimes you just think....for goodness sake how loud do we have to shout for them to really listen.

    You take care Leecylou x

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