1. Sign our petition calling on Cochrane to withdraw their review of Exercise Therapy for CFS here.
    Dismiss Notice
  2. Guest, the 'News in Brief' for the week beginning 18th March 2024 is here.
    Dismiss Notice
  3. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

Scottish Parliament hearings and report on #MEAction Scotland petition - 2019/20

Discussion in 'Advocacy Projects and Campaigns' started by Sly Saint, May 31, 2019.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    9,574
    Location:
    UK
    erin, Andy, MEMarge and 13 others like this.
  2. MeSci

    MeSci Senior Member (Voting Rights)

    Messages:
    4,440
    Location:
    Cornwall, UK
  3. Trish

    Trish Moderator Staff Member

    Messages:
    51,870
    Location:
    UK
  4. Trish

    Trish Moderator Staff Member

    Messages:
    51,870
    Location:
    UK
    Is there any information about what happened at this meeting?
     
  5. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    9,574
    Location:
    UK
    dangermouse, petrichor and Trish like this.
  6. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    8,385
    Just to clarify, it's p13 as per normal whole pages, but sort-of-page 17 as indicated in the document itself. I got a bit confused.

    upload_2019-6-8_17-20-52.png
     
    Esther12, petrichor and Trish like this.
  7. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    9,574
    Location:
    UK
  8. Andy

    Andy Committee Member

    Messages:
    21,810
    Location:
    Hampshire, UK
    Action for ME have put out some tweets about it.

    https://twitter.com/user/status/1207583584523104256


    https://twitter.com/user/status/1207587886243209216


    https://twitter.com/user/status/1207591900548681728


    https://twitter.com/user/status/1207591906336792579
     
    MEMarge, rvallee, erin and 5 others like this.
  9. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    12,297
    Location:
    Canada
    The submissions by NHS services are abysmal. Institutional failure across the board. There does not appear to be any actual expertise or even basic competence anywhere within those services, and falling upwards with the managers being even more clueless than the practitioners.

    The defense of PACE by NHS Lothian is just plain bizarre, might as well have been written by Sharpe himself, filled with nonsensical and false statements. Given the many years of those treatments in practice, it is effectively useless to rely on a biased trial when there is real-life data that are purposefully not being accurately recorded, and when surveys of those services always show the same failure. Shameful. Hughes effectively schooled them but their position is not based on reality so facts are unlikely to have any impact.

    NHS Borders did not spend more than 10 minutes on their submission. Pathetic.

    Good submissions by Stuart Brown. Other excellent submissions overall.

    Looking forward to an official response on this (in PE1690/QQ):
    This is also a very important point:
    Dismissing the original protocol as flawed is most definitely not a serious justification and in fact is damning of everyone involved in the process for having allowed this nonsense to be an official explanation in published research. It was flawed and consequently misleading so deviating to improve the outcomes is OK? Because multiple agencies and review panels approving of a "flawed and consequently misleading" points to massive system-wide failure. Which happens to be true but that does not absolve any particular failure.

    Shame on everyone involved on the side of those "services". You truly bring shame to your own profession and everything it stands for. A lump of butter sitting on a chair at room temperature has more substance and value than the totality of all those services put together.
     
    Last edited: Dec 19, 2019
    MEMarge likes this.
  10. Esther12

    Esther12 Senior Member (Voting Rights)

    Messages:
    4,393
    I wonder who wrote that - who can be challenged?

    Whoever wrote and/or approved that submission clearly should not hold a position with any authority over patients.
     
    rvallee, MEMarge and chrisb like this.
  11. ladycatlover

    ladycatlover Senior Member (Voting Rights)

    Messages:
    3,702
    Location:
    Liverpool, UK
    Sharpe spent time in Edinburgh. I think in the 90s? So not really surprising that NHS Lothian just loves PACE.

    https://en.wikipedia.org/wiki/Michael_Sharpe
     
    rvallee, Dolphin and MEMarge like this.
  12. chrisb

    chrisb Senior Member (Voting Rights)

    Messages:
    4,602
    It does raise questions about possible "outsourcing" of work.
     
  13. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    13,142
    Location:
    UK West Midlands
    Isn’t Edinburgh where the FND people are?
     
    Dolphin, ladycatlover and MEMarge like this.
  14. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

    Messages:
    3,324
    To clarify:

    Action for M.E.'s Tweet read:


    Whereas, the actual words in the document were:

    https://www.parliament.scot/S5_PublicPetitionsCommittee/Submissions 2019/PublicPapers19Dec19.pdf

    Page 4:

    6. NHS Forth Valley stated that the term ME is a “historic diagnosis that is no longer used”, outlining treatments for patients who are diagnosed with fibromyalgia and chronic fatigue syndrome. NHS Forth Valley details the treatment for patients with fibromyalgia, stating that the “evidence base for treatment of fibromyalgia supports the use of graded exercise and cognitive behavioural therapy.”​


    The wording of the Tweet has been taken up with AfME's Twitter admin.
     
    rvallee, Dolphin, Theresa and 4 others like this.
  15. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

    Messages:
    3,324
    For NHS England and NHS Scotland, the Read Code (CTV3) Terminology system has been the mandatory terminology system for use in NHS primary care settings.

    For NHS England, the Read Code (CTV3) Terminology has been retired and subsumed into/replaced by SNOMED CT UK Edition, which became mandatory for use in NHS England primary care settings from April 2018.


    SNOMED CT is an international standardized electronic terminology system for recording and sharing symptoms, diagnoses, clinical findings, procedures etc at the point of contact in primary and secondary care and across other health care settings.

    SNOMED CT is already being used in some NHS secondary care settings but is planned to be implemented across all NHS England secondary care, acute care, mental health, community systems, dentistry and other systems used in direct patient care within the next couple of years.


    The Read Code (CTV3) code was: Xa01F Chronic fatigue syndrome.


    For SNOMED CT UK Edition (and also for the International Edition), the "Preferred" Concept Term is also "Chronic fatigue syndrome".

    The SNOMED CT Concept term is: SCTID 52702003 | Chronic fatigue syndrome (disorder) |


    However, all terms below marked as "S" (Synonyms) are designated "Acceptable" terms in the UK Edition and they all take the same SNOMED CT Concept code: SCTID: 52702003.


    SNOMED CT UK Edition:

    52702003 | Chronic fatigue syndrome (disorder) |



    [​IMG]




    All the terms listed above are cross mapped to ICD-10 G93.3 in the SNOMED CT to WHO's ICD-10 Classification Map:


    SNOMED CT UK Edition Classification Map tab:



    [​IMG]


    -----------------------------------------

    SNOMED CT in NHS Scotland:


    https://www.isdscotland.org/Product...logy-Services/Coding-and-Terminology-Systems/

    https://www.isdscotland.org/Products-and-Services/Terminology-Services/SNOMED-CT-Resources/

    Read Code Retirement in NHS Scotland:
    https://www.scimp.scot.nhs.uk/snomed-ct-read-code-retirement

    ------------------------------------------

    SNOMED CT terminology system and clinical classifications, like ICD-10, work together to fulfil different needs:

    [​IMG]

    Slide source:
    Presentation: NHS Digital: Clinical Coding for non coders – Overview of clinical coding, how ICD-10 and SNOMED CT work together, and the role of the Clinical Classifications Service.
     
    Last edited: Dec 20, 2019
    SallyC, rvallee and ladycatlover like this.
  16. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

    Messages:
    3,324
    rvallee likes this.
  17. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    12,297
    Location:
    Canada
    Hughes took them to school in a later response. Another submission did as well.

    Though in a way it accomplished the goal of throwing a dead cat on the table so that everyone will focus on the dead cat on the table instead of the actual issue. Their reply defending PACE had nothing to do with the question asked and was entirely inappropriate. Which raises many questions indeed of who actually provided that answer.
     
    Esther12 likes this.
  18. Amw66

    Amw66 Senior Member (Voting Rights)

    Messages:
    6,262
  19. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

    Messages:
    3,324

    The AfME Tweet has now been removed.
     
    ladycatlover and rvallee like this.
  20. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    9,574
    Location:
    UK

Share This Page