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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. Kate Heydon‏ @kateheydonorg Jan 18
      Replying to @katemasters67 @C7RKY @MikeStone2_EoL

      You might still make a difference though? I wrote to Andrew Lansley, our MP and minister for health, in 2012. He did nothing and didn't meet with me. But apparently Heidi Allen is less-useless, allegedly; is it worth writing to her and getting her involved in positive DNR change?

      1 reply 0 retweets 0 likes
    2. Kate Masters‏ @katemasters67 Jan 18
      Replying to @kateheydonorg @C7RKY @MikeStone2_EoL

      My dad took a legal case and won the right for people to know about DNACPR. A consultant at CUH is working on something called ReSPECT which I have mixed views on. However their CQC report said they are not following the ruling they lost, so change is a bit hit and miss

      3 replies 1 retweet 1 like
    3. Kate Masters‏ @katemasters67 Jan 18
      Replying to @katemasters67 @kateheydonorg and

      I’ve written to Hunt to get a national campaign on CPR but there is no political will. How’s your recuperation been/going?

      1 reply 0 retweets 1 like
    4. Kate Heydon‏ @kateheydonorg Jan 18
      Replying to @katemasters67 @C7RKY @MikeStone2_EoL

      I'm functionally mobile: I struggle with pain levels, use opioids otherwise I literally don't walk, & I'm annoyingly slow still. I can 'run' again with orthotics, RAL, an abnormal (trendelenburg) gait +foot clawing, +long recovery time. But, as yet not half-marathons as pre-2012.

      2 replies 0 retweets 0 likes
    5. Mike Stone‏ @MikeStone2_EoL Jan 19
      Replying to @kateheydonorg @katemasters67 @C7RKY

      I can understand why you are 'campaigning' - it is a bit peculiar (it is usually 'a bad experience' that gets people like Kate, you and me 'involved'' - then, we get 'you are too personally-involved to be objective' thrown at us, don't we?).

      2 replies 2 retweets 2 likes
    6. 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
    7. 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
    8. 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
    9. 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
    10. 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
      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?!

      8:20 AM - 19 Jan 2018
      • 2 Retweets
      • 1 Like
      • Kate Heydon Ken Lownds
      2 replies 2 retweets 1 like
        1. New conversation
        2. Mike Stone‏ @MikeStone2_EoL Jan 20
          Replying to @C7RKY @kateheydonorg @katemasters67

          PHSO investigator told me 'we don't know what was discussed at that meeting, because the PCT did not keep a record'. I sent to PHSO 'well - I was at that meeting, why didn't you ask me what was discussed?'. PHSO promptly gave me a different 'investigator'.

          2 replies 2 retweets 1 like
        3. John Clarke‏ @C7RKY Jan 20
          Replying to @MikeStone2_EoL @kateheydonorg @katemasters67

          I'm going to guess (to borrow another common phrase) that the new investigator didn't make any difference to the overall outcome? I sent PHSO the relevant contemporaneous notes - why did I bother? I focused on police once I grasped the scale of PHSO issues from @phsothefacts.

          2 replies 3 retweets 1 like
        4. Della Reynolds‏ @phsothefacts Jan 20
          Replying to @C7RKY @MikeStone2_EoL and

          Did the police deal with your complaint @C7RKY

          2 replies 1 retweet 1 like
        5. John Clarke‏ @C7RKY Jan 20
          Replying to @phsothefacts @MikeStone2_EoL and

          That's more than a tweet's worth of response, I'm afraid Della. VERY long story short; they're still giving me the runaround, despite having an MP & his QC friend review evidence & write to Ch Constable. That provoked a joke of an investigation, which I'm about to complain about.

          2 replies 0 retweets 0 likes
        6. Mike Stone‏ @MikeStone2_EoL Jan 22
          Replying to @C7RKY @phsothefacts and

          1/n My PCT's investigation of the fiasco after my mum's death provided no answers to the actual questions, answered several questions which were not questions in the first place, and told me that my mum had died some days after she had been cremated, among other things. But the

          2 replies 1 retweet 1 like
        7. Mike Stone‏ @MikeStone2_EoL Jan 22
          Replying to @MikeStone2_EoL @C7RKY and

          2/n most annoying aspect of that investigation, is that a few weeks after my mum's death, nobody had said 'why did this happen' and I sent some questions to the district nurses. The DNs passed my questions to the PCT who sent me a letter informing me that I had lodged a

          2 replies 0 retweets 2 likes
        8. Mike Stone‏ @MikeStone2_EoL Jan 22
          Replying to @MikeStone2_EoL @C7RKY and

          3/n 'formal complaint' (which I hadn't - I had asked the nurses if they would answer some questions for me, in response to an unsolicited phone call from the nurses asking if they could call on me 'for a chat') and telling me the name of a PCT person who would perform the

          1 reply 1 retweet 1 like
        9. Mike Stone‏ @MikeStone2_EoL Jan 22
          Replying to @MikeStone2_EoL @C7RKY and

          4/n investigation. This PCT person, did not take the elementary step of asking me to tell her, what I wanted the PCT to investigate. Instead, she assumed that the questions I had put to the nurses, were the questions which an investigation needed to answer: they were not, I had

          2 replies 1 retweet 2 likes
        10. 17 more replies
        1. New conversation
        2. 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
        3. 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
        4. 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
        5. 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
        6. 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.

          1 reply 1 retweet 1 like
        7. 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
        8. End of conversation

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