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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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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I like that analogy, thank you. I really miss my job but this compensates for it. Am thankful that my disease is under control and now have fantastic Consultant who listens and we work together.
End of conversation
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