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Action for ME raises concerns in Scottish Parliament

Discussion in 'General ME/CFS News' started by MeSci, Nov 17, 2017.

  1. MeSci

    MeSci Senior Member (Voting Rights)

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    Location:
    Cornwall, UK
    Source: Action for ME
    Date: November 14, 2017
    URL:
    https://www.actionforme.org.uk/news/raising-concerns-about-me-in-scottish-parliament/

    Raising concerns about M.E. in Scottish Parliament
    --------------------------------------------------

    Action for M.E. has raised concerns about the lack of awareness and
    understanding of M.E./CFS among health professionals at the Scottish
    Parliament today.

    Clare Ogden, Head of Communications and Policy at Action for M.E.,
    appeared alongside other representatives from the voluntary sector to
    give evidence to the Health and Sport Committee as part of their inquiry
    into clinical governance in the NHS. She spoke about the need for more
    systematic and wide-spread implementation of the Scottish Good Practice
    Statement, a guideline produced in Scotland in 2008 to ensure
    professionals had adequate guidance for appropriate practice for
    patients with M.E.

    Other issues highlighted include:
    * People with M.E. had been seen by health professionals without a
    proper understanding of the condition, and then failed to treat them
    with dignity and respect.
    * Families affected by M.E. are disproportionately referred for child
    protection proceedings, due to a lack of awareness from health and
    education professionals of the symptoms of M.E. and the limitations
    these place on what activities a child can take part in.
    * Patients must be involved from the earliest point of service planning,
    as well as ensuring there's an accessible and transparent procedure for
    feedback on services.

    Action for M.E. were invited to the evidence session by the Committee,
    following our submission of written evidence which was based on survey
    responses from people with M.E. in Scotland. The Committee will also
    consider evidence from patients and clinicians, before announcing its
    findings.

    --------
    (c) 2017 AfME
     
    AndyPandy, Trish, ScottTriGuy and 4 others like this.
  2. large donner

    large donner Established Member (Voting Rights)

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    Meanwhile the PACE trial and AfMEs relationship with Esther Crawley is an insignificance that PWME dont need advocacy orgs to get across to the establishment.
     
  3. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    I have found the one from 2010 (?)
    just reading it now and so far it seems better than what we have in England
    http://www.scot.nhs.uk//wp-content/uploads/2015/06/GoodPracticeStatement.pdf

    eta: the part on GET
    Graded exercise therapy (GET) is intended to redress decline in physical fitness due to inactivity.18,19 GET has proved to be a particularly controversial form of treatment – which many patients have concerns about and some patients have indicated that GET has worsened their symptoms (see below).
     
    Last edited: Nov 17, 2017
  4. Scarecrow

    Scarecrow Senior Member (Voting Rights)

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    If only doctors would actually read it.
     
    Sly Saint likes this.
  5. Esther12

    Esther12 Senior Member (Voting Rights)

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    There does seem to be a problem here.
     

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