Do you have a UK NICE care plan?

Discussion in 'General ME/CFS discussion' started by MrMagoo, Jan 25, 2024.

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Do you have an MECFS Care Plan as per UK NICE?

This poll will close on Jan 24, 2025 at 5:15 PM.
  1. Yes

    0 vote(s)
    0.0%
  2. No

    35 vote(s)
    85.4%
  3. I’m not in the UK

    6 vote(s)
    14.6%
  1. MrMagoo

    MrMagoo Senior Member (Voting Rights)

    Messages:
    434
    Hi
    I’ve been trying to fill one in (got an excel download which makes it straightforward) although I’m getting a bit disheartened because it’s supposed to be completed by a Dr, and reviewed annually.

    I think the GP wants the ME clinic to do it, but they’re not going to, because they’re run by OT/Physio’s

    Has anyone managed to get the UK NICE guidelines for ME/CFS care plan done by a Dr, if so, how???????
     
  2. Kitty

    Kitty Senior Member (Voting Rights)

    Messages:
    6,019
    Location:
    UK
    I've got a care plan, but it predated the guidelines by a few years.

    And when I got it, it didn't have anything in it apart from my name, address, and date of birth, so I refused to sign it. It was at least 12 years ago, and nobody's mentioned it since. :rolleyes:
     
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  3. Fizzlou

    Fizzlou Senior Member (Voting Rights)

    Messages:
    177
    Location:
    Cheshire
    No. Asked ME clinic and GP. Both refused.
     
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  4. MrMagoo

    MrMagoo Senior Member (Voting Rights)

    Messages:
    434
    Well this is going pretty much as I expected…
     
  5. BazzaBoyle

    BazzaBoyle Established Member

    Messages:
    17
    I asked the team at UCLH and apparently they are working on implementing them in the near future. If anyone has an example/template they could send me, I'd be really grateful.
     
    Binkie4, alktipping, MrMagoo and 4 others like this.
  6. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

    Messages:
    3,854
    Am I making this up or did the previous Nice Guidelines also recommend a care plan with annual reviews? Having said that in 30 years no medical professional has suggested this for me.
     
    MEMarge, EzzieD, Binkie4 and 6 others like this.
  7. JemPD

    JemPD Senior Member (Voting Rights)

    Messages:
    4,227
    Care plan :rofl::rofl::rofl::rofl::rofl::rofl: whats that?
    TBH i dont know what theyd put in it anyway, that they plan to ignore me for another 12 months?

    I was recently asked (by a community nurse visiting me for something else) - who oversees your health care Jem, for your 'chronic fatigue'?
    I said 'oversees'? nobody oversees care for PwME/CFS, not long term anyway.

    I resisted the urge to tell her nobody oversees my care for 'chronic fatigue' because i dont have 'chronic fatigue':banghead::rolleyes::banghead:
     
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  8. MrMagoo

    MrMagoo Senior Member (Voting Rights)

    Messages:
    434
  9. MrMagoo

    MrMagoo Senior Member (Voting Rights)

    Messages:
    434
    They did indeed say that. However, it’s only a guideline.
     
  10. MrMagoo

    MrMagoo Senior Member (Voting Rights)

    Messages:
    434
    Kitty, Peter Trewhitt and alktipping like this.
  11. Trish

    Trish Moderator Staff Member

    Messages:
    53,646
    Location:
    UK
  12. JemPD

    JemPD Senior Member (Voting Rights)

    Messages:
    4,227
    sorry MrMagoo, when i said 'whats that?' & laughed it was being sarcastic... i know we are all supposed to have one, that NICE mandates it, i think even the old GL said we should have one, i was laughing because its never materialised and the idea that GPs etc will do one for us is just comical to me based on my experience.
     
    MEMarge, EzzieD, Kitty and 5 others like this.
  13. MrMagoo

    MrMagoo Senior Member (Voting Rights)

    Messages:
    434
    I think you have to click on the tabs for different pages. At the top “data sheet” on a blue-grey background
     
  14. MrMagoo

    MrMagoo Senior Member (Voting Rights)

    Messages:
    434
    No worries, I read it that way!
     
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  15. EzzieD

    EzzieD Senior Member (Voting Rights)

    Messages:
    555
    Location:
    UK
    There's a NICE care plan?? This is the first I've ever heard of such a thing.
    This exactly. My care plan would consist of 'Do nothing'. Well, at least then they won't be doing actual iatrogenic harm, such as CBT/GET, so there's that.

    ETA: Ah, thanks for the link, @MrMagoo , interesting to see what it looks like. Although, I can't imagine any GP taking the time to go through all that - is that what they're meant to do?
     
    Last edited: Jan 26, 2024
  16. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    13,913
    Location:
    UK West Midlands
    I think under the old guidelines the more aware and able to advocate for themselves PWME would have chosen not to mention care plans at all anticipating that if GPs were doing things according to the guidelines GET/CBT would be included. And certainly I don’t remember coming away from the CFS clinic having heard anything about the concept of having a care plan.
     
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  17. TiredSam

    TiredSam Committee Member

    Messages:
    10,510
    Location:
    Germany
    I read that as "overseas" and had to re-read it a few times to work out what on earth you were talking about. My best guess at first was that the community nurse was telling you that you might as well get someone abroad to deal with your chronic fatigue.

    I actually do have an overseas health plan - I have told my wife that if ever I have to go into hospital when we are visiting the UK, under no circumstances is she to mention that I have ME.
     
    MrMagoo, MEMarge, bobbler and 8 others like this.

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