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Scottish Parliament discussion of #MEAction Scotland petition - May 30th 2019

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

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Scottish Petitions Committee discussion on M.E./CFS
     
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  2. MeSci

    MeSci Senior Member (Voting Rights)

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  3. Trish

    Trish Moderator Staff Member

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  4. Trish

    Trish Moderator Staff Member

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    Is there any information about what happened at this meeting?
     
  5. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  6. Barry

    Barry Senior Member (Voting Rights)

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    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
     
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  7. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  8. Andy

    Andy Committee Member & Outreach

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    Action for ME have put out some tweets about it.







     
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  9. rvallee

    rvallee Senior Member (Voting Rights)

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    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
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  10. Esther12

    Esther12 Senior Member (Voting Rights)

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    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.
     
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  11. ladycatlover

    ladycatlover Moderator Staff Member

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    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
     
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  12. chrisb

    chrisb Senior Member (Voting Rights)

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    It does raise questions about possible "outsourcing" of work.
     
  13. NelliePledge

    NelliePledge Moderator Staff Member

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    Isn’t Edinburgh where the FND people are?
     
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  14. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    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.
     
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  15. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    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
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  16. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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  17. rvallee

    rvallee Senior Member (Voting Rights)

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    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.
     
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  18. Amw66

    Amw66 Senior Member (Voting Rights)

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  19. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    The AfME Tweet has now been removed.
     
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  20. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    upload_2019-12-21_12-3-14.jpeg
     
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