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NICE Guideline Committee Register of Interests, 9 April 2019

Discussion in '2020 UK NICE ME/CFS Guideline' started by Sarah, Apr 9, 2019.

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  1. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    5,424
    NICE needs to do something about FII. It seems to be totally out of control. Serious error in the system.

    The unusual patterns of healthcare utilization, school attendance, investigation and so on are not unusual, they are often the norm in ME/CFS. Declining GET for one's child is not abuse.
     
    Hoopoe, Apr 12, 2019
    #21
    Peter Trewhitt, ladycatlover, andypants and 3 others like this.
  2. Amw66

    Amw66 Senior Member (Voting Rights)

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    6,769
    Sadly
     
    Amw66, Apr 12, 2019
    #22
    ladycatlover and Binkie4 like this.
  3. Trish

    Trish Moderator Staff Member

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    Location:
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    Speaking as an individual, not with my committee hat on, I am very concerned about this and think it is worth a polite letter to the committee chair and whoever else deals with this.
     
    Trish, Apr 12, 2019
    #23
    EzzieD, Peter Trewhitt, ladycatlover and 4 others like this.
  4. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    In January, Helen Finn, Communications Manager for NICE replied to a letter we had sent re the composition of the Committee in the following terms.

    “As a result of concerns raised with the appointments made so far we have reviewed the appointments and we consider that they are appropriate and that any interests that the committee members have declared can be managed using our policy on declaring and managing interests for NICE advisory committees.”

    Nice’s COI policy below. ( not yet read but presumably it informs the decisions they have made).

    https://www.nice.org.uk/Media/Defau...rocedures/declaration-of-interests-policy.pdf

    S4ME thread https://www.s4me.info/threads/nice-...s-now-been-published.6197/page-37#post-137054
     
    Binkie4, Apr 12, 2019
    #24
    Peter Trewhitt, ladycatlover, Esther12 and 2 others like this.
  5. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    Don't worry, I've already sent a link to the chair.
     
    adambeyoncelowe, Apr 12, 2019
    #25
    Sly Saint, EzzieD, Peter Trewhitt and 6 others like this.
  6. Trish

    Trish Moderator Staff Member

    Messages:
    55,414
    Location:
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    Do you mean a link to this thread?
     
    Trish, Apr 12, 2019
    #26
    ladycatlover and Andy like this.
  7. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    2,736
    Yes.
     
    adambeyoncelowe, Apr 12, 2019
    #27
    ladycatlover, Trish, NelliePledge and 1 other person like this.
  8. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    1,628
    LOcalME have drafted a stage 3 complaint to the Ombudsman - not yet sent ( my fault...)
     
    Suffolkres, Apr 12, 2019
    #28
    Peter Trewhitt, ladycatlover, John Mac and 1 other person like this.
  9. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    @Suffolkres - thanks. What is a stage 3 complaint?
     
    Binkie4, Apr 12, 2019
    #29
    ladycatlover likes this.
  10. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    1,628
    Stage 1 and Stage 2 with NICE, then the Ombudsman next if we were not happy and not accepting NICE responses.
     
    Last edited: Apr 12, 2019
    Suffolkres, Apr 12, 2019
    #30
    Alison Orr, Peter Trewhitt, Binkie4 and 2 others like this.
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