#MEAction Scotland News

Discussion in 'News from organisations' started by Andy, Jun 30, 2018.

  1. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    Yes, Australia actually spends more than many countries despite it's smaller size...

    UK: https://mrc.ukri.org/about/what-we-do/spending-accountability/facts/ (about $1 billion USD)

    Australia: https://aamri.org.au/news-events/2019-20-federal-budget-whats-in-it-for-medical-research/ ($730 million USD)
     
  2. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  3. Andy

    Andy Retired committee member

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    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
     
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  4. 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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  5. 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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  6. ladycatlover

    ladycatlover Senior Member (Voting Rights)

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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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  7. chrisb

    chrisb Senior Member (Voting Rights)

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

    NelliePledge Moderator Staff Member

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    Isn’t Edinburgh where the FND people are?
     
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  9. 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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  10. 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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  11. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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  12. 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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  13. Amw66

    Amw66 Senior Member (Voting Rights)

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  14. 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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  15. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  16. Amw66

    Amw66 Senior Member (Voting Rights)

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    The petition was continued and a second hearing was yesterday - reframed to bring in potential for ME after COVID
    Parliamentary TV link - petition hearing starts at 10:12:14

    https://www.youtube.com/watch?v=Po9F9BVv9SU


     
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  17. Andy

    Andy Retired committee member

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  18. Amw66

    Amw66 Senior Member (Voting Rights)

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    YOUTUBE VIDEO STARTS AT 41 MINS
     
  19. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    Attached Files:

    Last edited by a moderator: Nov 17, 2020
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  20. Amw66

    Amw66 Senior Member (Voting Rights)

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    Copied from UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion



    From the stakeholder questionnaire - zoom meeting next week for discussion with Blake Stevenson who have the Scottish Government commission for engagement
    Qiote esasy to respond as other than 1 speciliast nurse we have no " experts". Scottish Good Practice Guide is pretty much out nof date though some of the principles are not too bad.

    If anyone wishes to comment/ raise issues I can feed back into a consulting group prior to next week's meeting

    Discussion questions - stakeholder review of ME/CFS NICE Guidelines

    NICE guidelines

    In October 2021, NICE produced new guidelines about diagnosing and managing ME/CFS in children, young people and adults. It includes recommendations on diagnosis, assessment, and care planning, safeguarding, access to care and managing ME/CFS and its symptoms.

    1. Which, if any, of the changes made by the NICE guideline did you welcome?

    2. When you consider the recommendations in the NICE guidelines, in the short term, what should be the key areas of focus and priority in Scotland?

    3. What existing infrastructure or services in Scotland could help the implementation of these guidelines?

    4. What existing infrastructure or services in Scotland could hinder the implementation of these guidelines?

    Implementation note

    The Scottish Government is considering the production of an implementation note, to support the practical implementation of the NICE guidelines, a similar approach was taken recently regarding guidance for long COVID.

    5. What do you think would be the advantages of an implementation note for the NICE guidelines? What would be the disadvantages?

    6. What elements of the Scottish Good Practice Statement (SGPS) can inform or be preserved in the development of an implementation note?

    7. What other guidance or principles could shape, or be referenced in, this implementation note? (e.g. Scotland’s self-management strategy for long term conditions Gaun Yersel!, the SGPS companion documents Quick Reference Clinical Guide and Patient Guide)

    8. What practical tools could assist clinicians in implementing these guidelines?

    Services for people with ME/CFS

    The NICE guidelines mention multidisciplinary teams, and specialist services.

    9. What does management of ME/CFS currently look like? (view from clinicians and people with ME/CFS)

    10. What pockets of established good practice or developing practice are you aware of? Do the NICE guidelines support or enable this way of working?

    11. What could a specialist service look like for people with ME/CFS? How would we look to begin developing such an approach? Who would be the key members of a multi-disciplinary team? Where should this service sit?

    The NICE guidelines also recommends that services need to adapt and be delivered as appropriate to the needs of the individual (e.g. adapting time & length of appointments, offering remote appts)

    12. What has been learnt from providing services during the pandemic and supporting people with long COVID, that could benefit people with ME/CFS?

    Moving forward

    13. How should we work together across sectors to implement the NICE guidelines?

    14. What would help in mediating and improving relationships between patient and clinical groups to move forward care for people with ME/CFS?

    15. How can awareness and understanding of ME/CFS be promoted in primary care / clinical settings? What should clinicians know to make a difference to the experience of people with ME/CFS?

    16. How could we establish clinical champions for ME/CFS in Scotland?
     
    Last edited by a moderator: Feb 24, 2022
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