Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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Medical Officer for England respond the MEA's petition

Discussion in 'General ME/CFS News' started by Countrygirl, Aug 8, 2017.

  1. Countrygirl

    Countrygirl Senior Member

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    http://www.meassociation.org.uk/201...tition-against-nice-guideline-08-august-2017/

    Click on the link for the actual letter.
     
  2. Esther12

    Esther12 Senior Member

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  3. Wonko

    Wonko Senior Member

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    The other side.
    So the chief medical officer isn't able to intervene on a matter of medical policy? What's the point of her then? What is she for if not to decide policy?
     
    Ellie_Finesse, Webdog, Jan and 7 others like this.
  4. charles shepherd

    charles shepherd Senior Member

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    The CMO also states that NICE are expecting to reach a firm decision on updating/reviewing the guideline in October

    CS
     
    Ellie_Finesse and MeSci like this.
  5. charles shepherd

    charles shepherd Senior Member

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    From the Cambridge English Dictionary:

    pass the buck
    blame someone or make them responsible for a problem that you should deal with:

    CS
     
  6. TiredSam

    TiredSam The wise nematode hibernates

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    Is there nobody to whom NICE and their "experts" are accountable?
     
  7. Valentijn

    Valentijn Senior Member

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    I'm starting to suspect that avoidance of accountability is the entire reason for NICE's existence.
     
  8. snowathlete

    snowathlete

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    What is her confidence based on exactly? I have seen no reason to be confident at all. Has she heard something I haven't then and if so what exactly has she heard? I think if people make statements like these they should explain why, otherwise it just comes across like an hollow attempt to placate people and not have to actually acknowledge there is a problem and do something about it.
     
  9. Chrisb

    Chrisb Senior Member

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    I thought that it was acknowledged that one of the main reasons for setting up NICE was to remove unpopular decisions about health rationing from politicians and ensure that such matters could not be discussed in Parliament.
     
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  10. slysaint

    slysaint Senior Member

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    MEMum and Invisible Woman like this.
  11. charles shepherd

    charles shepherd Senior Member

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  12. slysaint

    slysaint Senior Member

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    "
    NICE is constituted currently as a Special Health Authority, and is accountable directly to the NHS chief executive - the permanent secretary at the Department of Health - and the Secretary of State for Health.

    With effect from 1 April 2013, the status of NICE will change from a SHA to that of an executive non-departmental public body. Its name will also change to the National Institute for Health and Care Excellence to reflect changes being made to its role and functions; the acronym will remain the same."

    "
    NICE's clinical credibility was called into question by the Relenza affair, when the Institute's findings were challenged. This led to criticism of the procedures by which NICE contracted out its research work. Reforms undertaken since the Select Committee report have largely eliminated this complaint, as standards of procurement have improved. This lack of credibility led to a situation where NICE was working largely in competition with the alternative assessment bodies it was intended to supersede for some time.

    The Institute also has a controversial responsibility for encouraging "innovation" in the pharmaceutical industry, and some of its decisions have led to concern about its independence from business."

    "It has also been argued widey that NICE should have greater responsibility for selecting its own work agenda. The priority given to technology appraisals - focusing on one specific treatment - has been questioned over its narrowness; it has been argued that NICE should focus its attention on clinical guidance, which looks at the whole range of treatment options for a particular condition."

    "
    In the meantime the Department of Health has agreed an initial list of joint NHS/social care topics for NICE to begin working on as from April 2013.

    These include:autism in adults and children; mental well-being of older people in residential care; the transition between health and social care, including discharge planning, admission avoidance, reducing readmissions and reducing unnecessary bed occupancy; medicines management in care homes; management of physical and mental co-morbidities of older people in community and residential care settings; domiciliary care; transition between children and adult services; child maltreatment."

    So with the change in status in 2013 it is no longer "
    accountable directly to the NHS chief executive - the permanent secretary at the Department of Health - and the Secretary of State for Health." (?)

    So who is it now accountable to?:confused:
     
  13. charles shepherd

    charles shepherd Senior Member

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  14. charles shepherd

    charles shepherd Senior Member

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    That's a very good question that I have been trying to answer today - without any real success so far

    Unless I'm missing something, the NICE website does not make this clear

    If anyone can locate an up to date and authoritative answer please pass it on!

    CS
     
  15. NelliePledge

    NelliePledge plodder

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    moosie and slysaint like this.
  16. Sidereal

    Sidereal Senior Member

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    "Dame"

    What century is this? :confused:
     
  17. Wonko

    Wonko Senior Member

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    The other side.
    I think "Dame" is a measure of social class, not time, so your question makes no sense
     
  18. Tilney

    Tilney

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    http://researchbriefings.files.parliament.uk/documents/CBP-7206/CBP-7206.pdf

    Pg 15
    It is important to note that NICE does not negotiate drug prices and only around 40% of drugs new to the UK market are evaluated by the NICE technology appraisal process each year. NICE does not decide on the topics for guidance and appraisals. Instead, topics are referred to NICE by the Department of Health, selected on the basis of a number of factors, including the burden of disease, the impact on resources, whether there is inappropriate variation in practice across the country, and factors affecting the timeliness or urgency for guidance to be produced.

    Probably far too simple but if

    "topics are referred to NICE by the Department of Health"

    The Department of Health should still be partly if not wholly responsible
     
  19. Aurator

    Aurator Senior Member

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    I read “confident that NICE will take the comments...fully into account...” as meaning that she is confident NICE will take careful note of the widespread opposition to the initial decision, will loathe PwME even more than they did before for not doing the decent thing and quietly going off into a corner to die, and will stand all the more firmly by that initial decision.
     
    Art Vandelay, Solstice, Jan and 6 others like this.
  20. SamanthaJ

    SamanthaJ Senior Member

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    I seem to remember reading that NICE now comes under NHS England. Unfortunately cannot currently recall where I read it. Here, probably! It confused me at the time because NICE guidance also applies to Wales, which would make it extra-undemocratic, so hopefully it's not true. CEO of NHS England is Simon Stevens, who was described in a BBC radio programme as a friend and former neighbour of Clare Gerada :(

    ETA: Can't find anything about NICE on the NHS England website though.
    Edit again: Nothing on NICE site about being under NHS England either. Also, re:Wales NICE states that

    "Decisions on how our guidance applies in these countries are made by the devolved administrations, who are often involved and consulted with in the development of NICE guidance".

    So I've just been talking nonsense.
     
    Last edited: Aug 8, 2017
    Invisible Woman likes this.

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