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Your experience of ME services - #MEAction UK survey report concludes services 'not fit for purpose'

Discussion in 'General ME/CFS news' started by Gecko, Oct 17, 2019.

  1. Gecko

    Gecko Senior Member (Voting Rights)

    Messages:
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    Location:
    England
    Your experience of ME services - Survey report by #MEAction UK

    Article: https://www.meaction.net/2019/10/17/me-services-in-the-uk-not-fit-for-purpose/

    Full report: https://www.meaction.net/wp-content...-ME-services-Survey-report-by-MEAction-UK.pdf

    Results included:
    Been a slog to get this done in time, but very glad we put in the effort, and hopefully it can be well used by the lay members on the NICE committee. 2,370 comments qualitatively analysed, all of which have been sent to NICE in the appendices, 43 charts included in the report. Check out appendix 1 for breakdowns of different questions by service attended.

    (I'm gonna be taking some time away from laptop so may not be very responsive for a little while.)
     
    Hutan, Lucibee, Nellie and 40 others like this.
  2. MEMarge

    MEMarge Senior Member (Voting Rights)

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    2,531
    Location:
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    Have a good rest, you have been amazing.

    Thankyou
     
    Gecko, Andy, Dolphin and 8 others like this.
  3. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    2,795
    Have so far not read it through thoroughly enough, but it is a very useful exercise.
     
    Gecko, Andy, Dolphin and 8 others like this.
  4. ProudActivist

    ProudActivist Senior Member (Voting Rights)

    Messages:
    199
    Location:
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    Thanks so much for doing this. A slog sounds an understatement!
     
    Gecko, MEMarge, Andy and 7 others like this.
  5. Amw66

    Amw66 Senior Member (Voting Rights)

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    5,218
    Thank you @Gecko , an amazing achievement .

    I hope it doesn't take too heavy a toll on you .
     
    Gecko, JaneL, alktipping and 7 others like this.
  6. WillowJ

    WillowJ Senior Member (Voting Rights)

    Messages:
    676
    excellent work. Thank you.

    Hope you have a good rest.
     
    Gecko, JaneL, alktipping and 6 others like this.
  7. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    1,762
  8. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    https://twitter.com/user/status/1185653979860078595
     
    Gecko, Joh, JaneL and 9 others like this.
  9. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    https://twitter.com/user/status/1185655114985553922
     
    Gecko, Joh, JaneL and 7 others like this.
  10. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    https://twitter.com/user/status/1185669942722646022
     
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  11. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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  12. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    There are some external appendices that might get missed:

    See Appendix 3 for the full list of comments from respondents who had not attended a specialist ME clinic.
    https://www.meaction.net/wp-content...ence-of-ME-services-report-by-MEAction-UK.pdf

    See Appendix 4 for further categories of mentions that received less than 10 responses each and the full list of comments made under ‘other’.
    https://www.meaction.net/wp-content...ence-of-ME-services-report-by-MEAction-UK.pdf

    See Appendix 5 for the full list of comments explaining respondents’ views on the future of UK clinics.
    https://www.meaction.net/wp-content...ence-of-ME-services-report-by-MEAction-UK.pdf

    Final comments:
    https://www.meaction.net/wp-content...ence-of-ME-services-report-by-MEAction-UK.pdf
     
    WillowJ, Gecko, Joh and 10 others like this.
  13. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    https://twitter.com/user/status/1185942658159726592
     
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  14. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    https://twitter.com/user/status/1185943770870767619
     
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  15. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    https://twitter.com/user/status/1185949904126001152
     
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  16. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    https://twitter.com/user/status/1185950433308807170
     
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  17. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    https://twitter.com/user/status/1185962685436956673
     
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  18. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    https://twitter.com/user/status/1185964298478215169

     
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  19. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    Gecko, Annamaria, EzzieD and 3 others like this.
  20. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    :cry:
    https://twitter.com/user/status/1186029652458070019
     
    Gecko, Annamaria, EzzieD and 3 others like this.

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