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Cornwall ME/CFS services

Discussion in 'UK clinics and doctors' started by Sly Saint, Jul 12, 2022.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
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    Location:
    UK
    This post has been copied and following discussion moved from
    ME/CFS services in the United Kingdom

    job ad

    Royal Cornwall Hospitals
    Specialist Occupational Therapist

    https://www.nhsjobs.com/job/UK/Corn..._TherapistAllied_Health_Professional-v4384654

    CFS/ME, 'fatigue as main presentation'....... doesn't sound very 'specialist' to me.
     
    Last edited by a moderator: Jan 9, 2023
  2. Lou B Lou

    Lou B Lou Senior Member (Voting Rights)

    Messages:
    429
    Royal Cornwall Hospitals

    "a collaborative biopsychosocial/occupational approach to patient rehabilitation and care. Applications need to be able to provide tailored programmes of rehabilitation and symptom management with a good knowledge of Graded Activity and Lifestyle Management, as well as Vocational Rehabilitation for those who are most debilitated with the condition."



    This sounds terrible.
     
    Ariel, EzzieD, livinglighter and 8 others like this.
  3. bobbler

    bobbler Senior Member (Voting Rights)

    Messages:
    2,313
    happy to pee money up the wall on something not in the guidelines whilst claiming they are short of both cash and staff in implementing the necessary care for patients who might be at risk of dying, and unable to provide basics to mean someone can live independently safely.

    All I can think is what a bunch of bigots people are. So much so they will spend money to still shove down the throat these ideologies for no good scientific reason, and when it isn't required of them. Someone is making the decisions somewhere to ask for this in order for funding to be assigned.

    And yes I'm done with allowing people, who should know better as part of their job or age to claim 'good intentions'. If you have good intentions on anything then you listen properly and do basic research and are accountable when it backfires and causes bad consequences from someone - and that informs your future behaviour.

    The weight of responsibility for someone's health should be on these people's shoulders and I find it terrifying - what 'good reason' is there for shoving all this, harmfully, down people who don't want or deserve or find it appropriate's throat against guidance? and what would cause someone to make so much effort to do it?

    Having seen the KPIs reported for the Southern one I wonder whether the driver is actually that Trusts or CCGs have left in 'recovery' as a 'result measure' because these things are written to 'targets' and expectations of what someone will 'meet'.

    You can imagine such places saying 'x appointments for a course' or something. Whether they are targets people get obsessed with showing they are 'doing something' over being able to 'do what is useful'. Cultures can force people to use these in order to answer for themselves in funding meetings etc.

    What measure should we as an ME community be suggesting replaces that? - satisfaction is iffy, and even perfect scientific care doesn't guarantee improvement, with appropriate treatments being individual.

    What is used for equivalent conditions?

    And who is it that is setting these things which are causing these decisions to be made on these job descriptions, it will surely trace back to something and somewhere - you normally have to get these signed off. I think FOIs or something showing that someone is asking which individual it is that is inadvertently or advertently driving this would be useful in order they know their name is understood to be next to that decision? Hey they could even be asked the question directly.
     
    Last edited: Jul 12, 2022
    Ariel, Hutan, alktipping and 3 others like this.
  4. CRG

    CRG Senior Member (Voting Rights)

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    Location:
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    It could be bigotry but can also be explained by institutional inertia - no one is in place to make a principled decision for change, so the system just keeps pushing out the same product. That may be a result of poor management, but it is often a symptom of an overstressed system that is flailing around trying to keep up with demand.

    Yes, within the NHS post creation, appointment and re-appointment are highly systematised but that doesn't mean each appointment is subject to strict review - a vacant post merely requires a systematic action, it doesn't mean that anyone is charged with thinking about the post itself or the service that it is part of. The system simply has to look at the existing post description and set about filling it - in the NHS that is something which is increasingly accompanied by organisational panic because of chronic medical staff shortages*.

    Of course the Cornwall case could be the result of intransigence somewhere within the management structure where the new Guidelines are being deliberately ignored, but I wouldn't rule out a systematic failure.

    * Staffing crisis deepens in NHS England with 110,000 posts unfilled
     
    alktipping, Binkie4, bobbler and 2 others like this.
  5. JemPD

    JemPD Senior Member (Voting Rights)

    Messages:
    3,915
    exactly this. its infuriating

    the equivalent thses days is mental health.... IAPT can only cope with mild issues, all complex cases (such as severe trauma related problems for example) that wont be amenable to a few sessions of CBT just get told - too complex sorry. So the milder cases get 'something' - although how useful it is is debateable, but anyone who is in serious need, in serious trouble just gets pushed out. Certainly in my area anyway, its happened to a couple of people i know.
     
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  6. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Location:
    UK
    the interpretation of what services pwME want reminds me a bit of a cartoon back in the day when I worked as a programmer
    upload_2022-7-13_12-43-15.png
     
    RedFox, EzzieD, Simbindi and 13 others like this.
  7. bobbler

    bobbler Senior Member (Voting Rights)

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    2,313
    It is Cornwall I'm thinking of specifically with this because I believe that the service until very recently was seen as a very good one that was safe. I know that the person running that left but I don't know how many years ago, just remember the job description being discussed on somewhere like MEA. SO this feels like a change TO rather than being somewhere that has been doing the same old thing for many years struggling to get up to date as far as the institution itself (who knows re: the staff member in charge who might have come from another service that was doing the GET BPS stuff).
     
  8. CRG

    CRG Senior Member (Voting Rights)

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    1,857
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    bobbler, alktipping and Hutan like this.
  9. bobbler

    bobbler Senior Member (Voting Rights)

    Messages:
    2,313
    Interesting. I've had a poke around old fb posts to see further. It maybe is a more mixed picture of recent times (I found a post as far back as 2012 when Pinching left when it seemed that was v biomed led, then more mixed since then)

    I've found this which was the MEA post about needing a new medical consultant back in 2020: https://meassociation.org.uk/2020/0...drUW6EaXFm6Ch_HMvUgPeUaAJDSgjUiZq8-WU2SKsAY70

    Facebook post itself (with comments, which seem to show a more mixed picture) from 2020: https://www.facebook.com/meassociat...7rukaAEaqTX6Hsb1S5YLBWPmHRr9YCZhrXfRFZdL2hTFl

    One from 2016 which states the clinic then offered CBT:
    Which is just a month or two after the same person posted the clinic look promising: https://www.facebook.com/meassociat...zhitA6ZFzxfJkogGU6rBNT3kVQHU4ZGhMQ2o4fZopcokl
     
    alktipping likes this.
  10. It's M.E. Linda

    It's M.E. Linda Senior Member (Voting Rights)

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    917
  11. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
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    Location:
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    Merged thread

    NHS Royal Cornwall Hospital - Treliske


    https://www.nhs.uk/services/hospital/royal-cornwall-hospital-treliske/X325/ratings-and-reviews

    the page has still not been updated but it has been removed.......

    maybe this is another way to get through to services that need to update their websites?

    @adambeyoncelowe
     
    Last edited by a moderator: Jan 9, 2023
    bobbler, Frankie, Revel and 15 others like this.
  12. RedFox

    RedFox Senior Member (Voting Rights)

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    Wow, I can't believe that actually worked!
     
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  13. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    Ash, It's M.E. Linda, MEMarge and 8 others like this.
  14. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Location:
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    This leaflet
    Clinical health psychology in the management of CFS/ME Cornwall and Isles of Scilly Chronic Fatigue Syndrome/ME Service
    (linked to on their website)
    revised 06/2020
    Review due 06/2023

    A4 leaflet (cornwall.nhs.uk)

    (this one also due for review 06/2023
    A4 leaflet (cornwall.nhs.uk)
     
    Ash, MEMarge, Trish and 1 other person like this.

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