1. Sign our petition calling on Cochrane to withdraw their review of Exercise Therapy for 'CFS'.
    Dismiss Notice
  2. Guest, the 'News in Brief' for the week beginning 9th September 2024 is here.
    Dismiss Notice
  3. Welcome! Read the Core Purpose and Values of our forum.
    Dismiss Notice

Open letter to Action for ME with concerns about their promotion of a problematic Care and Support Plan Template

Discussion in 'Open Letters and Replies' started by Trish, Aug 23, 2024.

Tags:
Page 5 of 5
  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    9,778
    Location:
    UK
    The MEA have been (sort of) monitoring compliance of services with the 'new' NICE guidelines, or at least getting some of the online content corrected.
    But maybe it's time the charities got together and did a repeat or enhanced version of the survey #MEAction did on ME services in the UK in 2019.
    Your experience of ME services - #MEAction UK survey report concludes services 'not fit for purpose' | Science for ME (s4me.info)

    just for comparison BACME also did one around the same time
    BACME CFS/ME National Services Survey Feb 2018 (Report Published March 2019) | Science for ME (s4me.info)

    Things have changed a lot with the 'arrival' of Long Covid so it would be good to have a better picture of what is currently going on, particularly given the current state of the NHS.
    The Charities could then put their heads together (maybe a first but you never know..) and come up with some kind of plan to prioritise what services should look like. This might need to include looking at the long covid guidelines (if there are any, I haven't checked and have lost track of what is going on with the amalgamation of clinics).
     
    Sly Saint, Sep 5, 2024
    #81
    JohnTheJack, hotblack, bobbler and 8 others like this.
  2. Trish

    Trish Moderator Staff Member

    Messages:
    54,477
    Location:
    UK
    I think for a survey to be accurate it needs some in depth digging into what services are actually doing. If it's just a questionnaire sent to the local funding bodies, or to the clnics themselves, they will probably just tick the boxes saying they are NICE compliant, or not bother to fill them in.
     
    Trish, Sep 5, 2024
    #82
    Nightsong, Missense, rvallee and 9 others like this.
  3. Andy

    Andy Committee Member

    Messages:
    22,689
    Location:
    Hampshire, UK
    My first quote was from the video.

    It is just a reminder to me that it isn't possible to please all of the people all of the time.
     
    Andy, Sep 5, 2024
    #83
    JohnTheJack, Sean, Amw66 and 5 others like this.
  4. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    14,442
    Location:
    London, UK
    In theory, yes, but if you work in an organisation that rightly considers it is obliged to have trustees with relevant skills relating to professional aspects and always has to have some trustees to fulfil its obligations you may be a bit stuck. You would need to have trustees happy to admit they weren't up to the job yet prepared to continue as if they did. It gets a bit tricky.

    Fortunately, it looks as if common sense can prevail at times.
     
    Jonathan Edwards, Sep 5, 2024
    #84
    Kiristar, JohnTheJack, hotblack and 6 others like this.
  5. MrMagoo

    MrMagoo Senior Member (Voting Rights)

    Messages:
    922
    Of course it’s not, but I think you’re taking it personally because of your involvement. I’m sure if you can check the log of the comments you will find that one.

    That doesn’t detract from my point that consideration should be given to a style guide, and focussed communications which don’t make unnecessary demands on pwME energy.
     
    MrMagoo, Sep 5, 2024
    #85
    Sean and Peter Trewhitt like this.
  6. Ash

    Ash Senior Member (Voting Rights)

    Messages:
    1,419
    Location:
    UK
    Right. Shame.

    Still…

    When someone asks for some sunglasses, explaining to you that the glare is hurting their eyes, and you don’t have any you wouldn’t necessarily be being helpful if you said “No, sorry about that, I don’t. Don’t worry though I’ll not let you go without. Here have some of this instead.” Whilst you enthusiastically squirt a full bottle of sunscreen into each of their sore eyes.
     
    Ash, Sep 5, 2024
    #86
    Lou B Lou, alktipping, hotblack and 7 others like this.
  7. MrMagoo

    MrMagoo Senior Member (Voting Rights)

    Messages:
    922
    I feel like Gladwell’s involvement is a relic of an earlier time. Things have changed.
     
    MrMagoo, Sep 5, 2024
    #87
    Lou B Lou, hotblack, bobbler and 3 others like this.
  8. Robert 1973

    Robert 1973 Senior Member (Voting Rights)

    Messages:
    1,489
    Location:
    UK
    Robert 1973, Sep 5, 2024
    #88
    Lou B Lou, hotblack, MrMagoo and 4 others like this.
  9. Amw66

    Amw66 Senior Member (Voting Rights)

    Messages:
    6,634
     
    Last edited by a moderator: Sep 5, 2024
    Amw66, Sep 5, 2024
    #89
    Lou B Lou, Kitty, alktipping and 4 others like this.
  10. Robert 1973

    Robert 1973 Senior Member (Voting Rights)

    Messages:
    1,489
    Location:
    UK
    Action for ME's AGM is next Friday: 13th September.

    "All are welcome"

    To attend, register through their website: https://www.actionforme.org.uk/news/2024-annual-general-meeting/

    Post copied to the AfME news thread. Go there to discuss the meeting.
     
    Last edited by a moderator: Sep 7, 2024
    Robert 1973, Sep 6, 2024
    #90
    Lou B Lou, Kitty, alktipping and 5 others like this.
  11. Trish

    Trish Moderator Staff Member

    Messages:
    54,477
    Location:
    UK
    I have just sent the following reply to Sonya Chowdhury. I decided to make it a personal reply rather than trying to get agreement from all the signatories to the original letter. It's taken longer than I intended as I've been somewhat crashed for the last week.

    Dear Sonya,

    Thank you for your reply. I very much appreciate the thoughtful, speedy and sensible response regarding withdrawal of the document, and dissociation of AfME from it. From reaction on the forum, many others have appreciated your openness in making the response public and apologising to people with ME/CFS

    I look forward to further news on AfME consultation over other AfME materials. In forum discussion it has been suggested that AfME could announce it is reviewing particular materials with a view to updating, and inviting the wider ME/CFS community to discuss openly and publicly via social media channels you set up, as well as making individual comments privately.

    I would suggest also that you consider withdrawing, or at least marking clearly as in need of update, all AfME materials that have been produced in conjunction with clinicians from the Bristol Clinic and/or members of BACME, regardless of whether they have already been updated since the 2021 NICE guideline was published.

    AfME is not the only source available to pwME for material to help them negotiate life with ME/CFS. Dare I suggest more co-operation, for example, between AfME and the MEA which has a wide range of useful materials written by Dr Charles Shepherd, some of which might be endorsed by AfME, with MEA agreement, and linked from your website, rather than both organisations needing to produce versions of the same thing. Both AfME and the MEA do some valuable work, and are criticised for other aspects of their work. I think many pwME in the UK would value greater coordination between the two organisations so we have the best of both, and less unnecessary duplication.

    I find it troubling that AfME, in presenting the now withdrawn document, reported there had been input from AfME staff. It was not clear what the nature of that input was, but the fact that they did not spot what seemed obvious to our members indicates a need for staff training on the finer details of the NICE guideline and a willingness to ask questions of a wide range of pwME to help them understand more about living with ME/CFS. Giving your staff time, as part of their contract each week, to spend a few hours reading forum discussions and other social media where pwME share their experiences, joining in to ask questions, and reading and watching selected resources such as the Dialogues for an Neglected Illness videos, could add value to your work and help to avoid mistakes such as this incident demonstrated. AfME staff and trustees are welcome to join S4ME. I'm sure our members would be happy to point to resources and threads worth AfME staff following, and to answer their questions.

    Yours sincerely,

    Trish Davis
     
    Trish, Sep 8, 2024
    #91
    hotblack, Old Monkey, Blueskytoo and 17 others like this.
  12. Kitty

    Kitty Senior Member (Voting Rights)

    Messages:
    6,433
    Location:
    UK
    That reads really well, @Trish.
     
    Kitty, Sep 8, 2024
    #92
    hotblack, Hutan, bobbler and 5 others like this.
  13. MrMagoo

    MrMagoo Senior Member (Voting Rights)

    Messages:
    922
    Great reply, many thanks Trish
     
    MrMagoo, Sep 8, 2024
    #93
    hotblack, obeat, Peter Trewhitt and 3 others like this.
  14. bobbler

    bobbler Senior Member (Voting Rights)

    Messages:
    3,383
    I've just found the following: Info-Guide-2-Care-and-support-planning-for-personal-health-budgets.pdf (peoplehub.org.uk)

    there might be others that are good and worth putting on here or the other thread, as this one focusing on the personalised health budgets, but is a useful document about how to put together the plans for those.

    Maybe there are some good partners - for example material from the 25% group, other severe-specific organisations for content relating to those more severe as well as the Nice guideline and maybe patient experts who have been at different levels - who might be good to put together to work up some of the more needed 'building blocks' that might be needed for plans, particularly for the medical type info.

    This has just made me realise how far-off and inappropriate the BACME-type clinics are. And the mindset of those running it/what they tend to produce. Traumatising those who have been harmed by weaponising of pseudo mental health stuff being embedded all the way through things.

    You can't 'stick' assumed needs onto people and some random's ideas of who they are and what they need, that's just hiding the old orthodoxy under pretending it is 'good intentions/because you care' but I think we need to put an end to us having to be polite in response to that given we are the ones harmed by it, not them.
     
    bobbler, Sep 17, 2024 at 1:04 AM
    #94
Page 5 of 5

Share This Page