I'm sure opinions will vary, but I think many would welcome the chance to work honestly with trusts/clinicians to understand what happened and help solve the problems. It's a variation on a theme: Not so much trust me I'm a doctor, as trust me, I'm a relative!
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Replying to @C7RKY @Trisha_the_doc
Becoming a patient myself was eye opening. Am ashamed to say that until then I thought I understood what it was like because I was a nurse. Joint working definitely the way forward.
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Replying to @lynn_laidlaw @Trisha_the_doc
I'd kind of got used to the patient & supportive relative roles. Didn't know any better. It was the complainant role that was the eye-opening one for me. WHOLE new world, right there! A place where candour & joint working don't exactly thrive currently. Be nice to see that change
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Replying to @C7RKY @Trisha_the_doc
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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Replying to @lynn_laidlaw @Trisha_the_doc
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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Replying to @C7RKY @Trisha_the_doc
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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Replying to @lynn_laidlaw @Trisha_the_doc
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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Replying to @C7RKY @Trisha_the_doc
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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Replying to @lynn_laidlaw @Trisha_the_doc
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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Replying to @C7RKY @Trisha_the_doc
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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Replying to @C7RKY @Trisha_the_doc
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.
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