Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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AfME: New report: specialist NHS services for M.E. in the UK

Discussion in 'General ME/CFS News' started by AndyPR, Jul 26, 2017.

  1. AndyPR

    AndyPR Tired Sam ate all the cookies!

    Reporting, not recommending.
    https://www.actionforme.org.uk/news...st-services-uk-healthcare-for-people-with-me/
     
  2. AndyPR

    AndyPR Tired Sam ate all the cookies!

    Is it? I've just looked down the list of recent threads and there doesn't seem to be anything that matches this. This is something AfME posted on the FB feed today, not their report from a week or so ago (or whenever their previous one was), might you be thinking of that older one?
     
  3. Invisible Woman

    Invisible Woman Senior Member

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    To be honest I have very mixed feelings about this - I am severely affected and given the current offerings I would rather be left alone to cope as best I can.

    Naturally, I understand that there are others who need medical support for day to day living. I'm just not sure that this is likely to bring them closer to getting the right support just now.
     
    TiredSam, Skycloud, Jan and 12 others like this.
  4. slysaint

    slysaint Senior Member

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    W. Sussex UK
  5. Esther12

    Esther12 Senior Member

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    Good for things like this to have their own thread imo. Personally, I'd much rather be without the current 'specialst CFS services'.
     
  6. AndyPR

    AndyPR Tired Sam ate all the cookies!

  7. Jonathan Edwards

    Jonathan Edwards Senior Member

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    It says:
    • work with policy-makers and NHS organisations to develop and implement a method to collect data on M.E. prevalence and clinical pathways
    • work with health professionals, other M.E. organisations and people affected by M.E. to explore how we can develop a national blueprint for appropriate, patient-led specialist M.E. services that meet the needs of people with M.E.


    ME prevalence is known well enough for this purpose. There is no way to be precise about it so a repeat would be a waste of time.
    There are no clinical pathways for which we have an evidence base of efficacy so why bother to collect data on them? Clinical pathways are for people who cannot think. If you can think you do what you think is most likely to be best in the circumstances.
    How do you develop a national blueprint for what is appropriate without evidence?
    What are patient-led services?

    I am afraid this sounds like empty burospeak.
    Except the last sentence, which is fair enough!
     
  8. Hutan

    Hutan Senior Member

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    Agreed.

    Everyone working in health care professions can think. Some can think better than others, maybe because of intrinsic intelligence or because they have had enough sleep or because they aren't distracted by a personal crisis. Some have more time than others; some have more experience than others; some have kept up to date with the latest medical advances better than others; some have more curiosity and compassion than others and so make the time to think.

    Clinical pathways, standard operating procedures, whatever they are called, do have a use. Done well, they consolidate what is known into procedures that are a very good start to ensuring a patient gets good care. Of course, they are particularly important for staff who don't have a lot of training or experience in the condition they are faced with. But studies have found that even experienced teams can improve the care they provide by using standardised checklists and procedures (obviously with the ability to consciously deviate from them when needed).

    They are a way of communicating the combined wisdom of the medical profession so that patients don't have to suffer while each staff member moves through a learning curve for each medical condition.

    I can imagine a national blueprint for the care of people suspected to have ME based on what is known right now that would be very useful. I expect you can too.

    It would include things like
    • comprehensive screening for other illnesses at diagnosis;
    • liaison with schools, employers and social welfare;
    • providing validation and compassion;
    • provision of information on management (e.g. pacing, not GET)
    • treatment of symptoms like orthostatic intolerance;
    • management of the severely ill (e.g. home visits; feeding tubes; requirements for dark and quiet when in hospital).
    • links to useful documents like the paediatric primer by Rowe et al.
    Whether Action for ME are the people to drive such a national blueprint is another question. But useful things could be done to improve care and change attitudes, even though there are currently no effective treatments.

    Even just the process of trying to create such a national blueprint could be useful.
     
    Last edited: Jul 26, 2017

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