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C7RKY's profile
John Clarke
John Clarke
John Clarke
@C7RKY

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John Clarke

@C7RKY

Of course views all mine. All without prejudice. Just a regular chap after all. Oh...and RT's may equally imply ridicule as endorsement.

UK
Joined December 2011

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    1. John Clarke‏ @C7RKY Jan 19
      Replying to @MikeStone2_EoL @kateheydonorg @katemasters67

      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?

      2 replies 1 retweet 2 likes
    2. Mike Stone‏ @MikeStone2_EoL Jan 19
      Replying to @C7RKY @kateheydonorg @katemasters67

      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

      1 reply 1 retweet 2 likes
    3. Mike Stone‏ @MikeStone2_EoL Jan 19
      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

      1 reply 2 retweets 2 likes
    4. John Clarke‏ @C7RKY Jan 19
      Replying to @MikeStone2_EoL @kateheydonorg @katemasters67

      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.

      2 replies 2 retweets 1 like
    5. Mike Stone‏ @MikeStone2_EoL Jan 19
      Replying to @C7RKY @kateheydonorg @katemasters67

      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).

      1 reply 1 retweet 2 likes
    6. John Clarke‏ @C7RKY Jan 19
      Replying to @MikeStone2_EoL @kateheydonorg @katemasters67

      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?!

      2 replies 2 retweets 1 like
    7. Kate Heydon‏ @kateheydonorg Jan 19
      Replying to @C7RKY @MikeStone2_EoL @katemasters67

      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

      1 reply 0 retweets 1 like
    8. Kate Heydon‏ @kateheydonorg Jan 19
      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.

      1 reply 0 retweets 0 likes
    9. Kate Heydon‏ @kateheydonorg Jan 19
      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.

      1 reply 0 retweets 1 like
    10. Kate Heydon‏ @kateheydonorg Jan 19
      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.

      1 reply 0 retweets 0 likes
      John Clarke‏ @C7RKY Jan 19
      Replying to @kateheydonorg @MikeStone2_EoL @katemasters67

      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.

      10:03 AM - 19 Jan 2018
      • 1 Retweet
      • 1 Like
      • Kate Heydon
      1 reply 1 retweet 1 like
        1. Kate Heydon‏ @kateheydonorg Jan 19
          Replying to @C7RKY @MikeStone2_EoL @katemasters67

          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.

          0 replies 0 retweets 1 like
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