Yes, I always thought it was a bit odd too. They seem to want 2 types of people involved. 1. Clinicians 2. Experts by experience (excluding those with actual experience, because it's too personal for them to be objective) So... clinicians then, mostly?
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1/2 I think 'experts by experience' DO HAVE 'personal experience', as I understand it. The big problem is this: the professionals want us 'service users' to describe our experiences, then they want to go away and [the professionals on their own] think about our input, while THEY
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Replying to @MikeStone2_EoL @C7RKY and
2/2 create their own 'behaviours/protocols'guidance'. We 'service users' need to be sitting INSIDE the groups which design the actual protocols/guidance to be used by the professionals http://www.bmj.com/content/350/bmj.h1846/rr … Not sure how we do that - or where we get users who understand law, etc
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My point was slightly tongue in cheek, but you're right - the end result always appears to be clinician led and it can feel as if lay evidence has been given a lower 'classification' in arriving at the overall conclusions sometimes.
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Can't help feeling that we might be 'mingling' court rulings and day-to-day behaviour now: but there are huge issues with 'investigators' only believing what the clinicians wrote down (I've had that 'attitude' from a PHSO investigator, myself).
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Yes, I borrowed the phrasing to make the point. Like you, I've had similar with PHSO, despite investigator being a nice chap. They just defer to whatever the trust tells them. Failed to use powers to seize original records in our case, yet determined no evidence of amendment?!
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This also! Plus, amazingly. Neither NHS Ombudsman, nor PALS @ CUH would investigate whether the DVT was unprovoked, as appeared; no one found ANY evidence of an injury over 5 1/2 weeks deterioration. Swelling + damage appeared solely to DVT (+ year later diagnosed pelvic mass).pic.twitter.com/p0zFKfT098
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Replying to @kateheydonorg @C7RKY and
Yet the 'unprovoked' distinction was key to accessing a pelvic scan (could have found the mass up to six months earlier), factor v leiden, ref: NICE Guidelines. Also, lack of help walking, lack of acknowledging mobility impairment; remains an issue. I was literally housebound.
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Replying to @kateheydonorg @C7RKY and
PALS @ CUH completely ignored that distinction - they're not medically trained, and apparently unaware of NICE Guidelines. NHS Ombudsman claimed that it was 'reasonable' for CUH to simply take a Bupa-Consultant letter at face value without review of notes or scans + scan reports.
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Replying to @kateheydonorg @C7RKY and
I'm hoping that e.g. if CUH operate on a cancer-diagnosis made by private hospital; that they actually CHECK scans, CHECK that a diagnosis is accurate? The recent Patterson trial, demonstrated issues around taking a (private-) consultant's diagnosis at face value, without checks.
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There are several in here who would tell you that taking any consultant's diagnosis on face value without checking might be a mistake. Private or otherwise. But every situation is different.
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Exactly! More so when consultant only reviewed patient (me) for 5 mins late at night, unanticipated emergency (proximal DVT diagnosed - ultrasound). After operating for hours on another patient. Without reference to medical notes, in private hospital without anticoagulation unit.
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