United Kingdom: BACME 2023 National Services Survey Report

Discussion in 'UK clinics and doctors' started by Dolphin, Oct 24, 2023.

  1. Dolphin

    Dolphin Senior Member (Voting Rights)

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    From: Dr. Marc-Alexander Fluks


    Source: British Association of Clinicians in ME/CFS (BACME) Date: October 23, 2023 URL: https://bacme.info

    BACME 2023 National Services Survey Report ------------------------------------------

    The BACME team are pleased to announce publication of the 2023 National Services Survey report. The report is now available to download from the BACME website or using this link:

    https://bacme.info/wp-content/uploads/2023/10/BACME-National-Services-Survey-Report-Oct23.pdf

    This has been a big project and has led to us being able to provide a very comprehensive view of the current provision of specialist ME/CFS care in the UK.

    We are grateful to all the individuals and organisations that have supported us with this piece of work including with the development of the survey and providing feedback on the report.

    We have highlighted BACME's key recommendations at the end of the report and these align with the actions listed on the DHSC interim delivery plan report. The top priorities for the clinical community are: * To support improved awareness and education across all medical, social care and welfare services * To expand the provision of specialist training about ME/CFS * Increase the medical involvement in specialist ME/CFS care to facilitate improved access to diagnosis, investigations, new treatments and clinical research. * Increase the provision of specialist care across the UK and for children and young people and people who are severely affected

    We are keen for this report and the recommendations to be circulated widely so it can be used to increase and improve the provision of specialist care to people with ME/CFS across the UK.

    If you would like to provide any feedback on the report please get in touch at info@bacme.info

    Kind Regards

    Dr Vikki McKeever BACME National Services Survey project lead

    Anna Gregorowski BACME chair

    The BACME National Services Survey team
     
    Last edited by a moderator: Oct 24, 2023
  2. CRG

    CRG Senior Member (Voting Rights)

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    Can't offer any sensible comments on a brief read - but this is very important data. Gives a pretty good picture of what is actually happening/not happening.
     
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  3. Hutan

    Hutan Moderator Staff Member

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    There's a bit I can't copy, but it notes that there has been an increase in children only services, from 3 in 2018 to 8 in 2023.
    70% of adult services are medium or large services. The majority of children represented sin the survey were seen in two large services. BACME note that large services have the opportunity to have a multidisciplinary team and can build highly specialist staff, while smaller services can provide locally accessible services.

     
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  4. Hutan

    Hutan Moderator Staff Member

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    This sounds pretty dire:
    (I started out with the intention of just reading the summary, but somehow missed when it finished. This is going on longer than I intended. )

    30% of the services don't offer diagnostic services! Page 40

     
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  5. Hutan

    Hutan Moderator Staff Member

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    Vague on what's being offered. I find it amazing that specialist services are so inadequate when it comes to diagnosing, whereas so focussed on providing 'therapy'.

    Finally, the bit we have all been waiting for - BPS or something useful? From page 48

    Yeah, vagueness that provides plenty of scope for the whims and prejudices of whatever sort of person is given the 'ME/CFS expert' hat. Some really worrying responses in there.
     
    Last edited: Oct 24, 2023
  6. Hutan

    Hutan Moderator Staff Member

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    To me it is madness that many specialist services aren't actually diagnosing, but most are offering mindfulness sessions that can be otherwise accessed at most community centres if people actually want that.

    Eye Movement Desensitisation and Reprocessing - what is this? Sounds like nonsense.
     
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  7. Hutan

    Hutan Moderator Staff Member

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    Compliance with the NICE Guidelines Page 53
     
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  8. Hutan

    Hutan Moderator Staff Member

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    CBT? page 59
    BACME asked if the CBT offered was compliant with the NICE idea of being supportive and not fixing false illness beliefs. Only 28 of the services replied, and even some of them were indicating that they weren't fully on board. BACME conclude that things are fine, but I think they need to understand that the issue of dropouts affects their survey just as much as it affects the reliability of BPS studies and clinic client satisfaction reports.


    and so goes the disappearance of ME/CFS with its NICE guideline requirements

    Sorry, I'll stop there. At this point you are probably thinking that you might as well have just read the whole document rather than waded through my quotes.
     
    Last edited: Oct 24, 2023
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  9. rvallee

    rvallee Senior Member (Voting Rights)

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    So still mayhem and nonsense, with no one responsible for anything. Got it.
     
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  10. NelliePledge

    NelliePledge Moderator Staff Member

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    I’ve only skimmed, there is some interesting information, a lot could no doubt be interpreted differently by a different reviewer
    responses show some services that are keen to demonstrate that what they do is compliant with the new NICE guidelines, some a flavour of we were already doing that, but also some not even bothering to reply.

    it was interesting to see that quite a few services report they actually have some level of involvement of a Doctor, some actually being special interest GPs, some (more than 5 years ago) reporting it’s a psychiatrist tho
     
  11. Kitty

    Kitty Senior Member (Voting Rights)

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    What therapy, though? There isn't any.

    If patients aren't there for initial diagnosis, tests to exclude alternative diagnoses, teaching of pacing and management techniques, assessments for disability aids, referrals for mental health support, advice about negotiating reasonable adjustments, investigation of new symptoms, or annual review, why are they having to make an inconvenient and tiring journey to a clinic?

    All those services would potentially be useful if offered (I'll take a guess that for the most part they aren't), but none of them are therapy.
     
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