In just 24 hours, @Trisha_the_doc has managed to get far more people to watch this short video than I managed in about 3 years of trying. So grateful...https://twitter.com/Trisha_the_doc/status/957187947081682944 …
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I had a 4 yr diagnostic odyssey which arguably cost me my job and driving licence. I had to officially complain about my care but thankfully it had a good outcome. I realise that many aren't so lucky.
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I'm sorry to hear that. Can't be easy to deal with. I think it helps to have clinical awareness from the outset in securing a good outcome. Most people can barely function after something's gone wrong, let alone grasp what's going on around them. They shouldn't have to, of course
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That's why I volunteer, if someone like me with clinical knowledge and good resources found getting a diagnosis hard what chance does anyone have! Am in awe of what people like yourself overcome, I had it easy in comparison.
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That's very kind of you to say so, but in truth, I've overcome nothing. For all my efforts. I set out with 2 goals and I've achieved neither - yet. Good for you volunteering! What is it you do? Hope you're still able to put your clinical knowledge to use. So valuable.
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I volunteer for Vasculitis UK mainly on the helpline, helpling patients get a diagnosis and treatment. Also very involved in Patient Insight in research, go to lots of meetings etc to represent patients view. Clinical knowledge has proved very helpful.
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Nice one. I know it's not quite plan A, but I'm glad you've found a good home for your skills. The 'voice of the patient' rarely makes much of a dent, to be frank. Knowledgeable patients included. But patients with clinical knowledge? Yeah.. that's not so easy to ignore. :)
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It's a work in progress! Interestingly research increasingly won't get funded without Patient Insight/ engagement. Need to remind myself it's baby steps but worthwhile.
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Well there's a whole army of patients out here trying to get their voices heard, so you'll not be short of support. I used to play rugby back in the day - you make a hole in the line, we'll push you through it. :)
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