Do you have a UK NICE care plan?

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

  • Yes

    Votes: 0 0.0%

  • No

    Votes: 36 85.7%

  • I’m not in the UK

    Votes: 6 14.3%
  • Total voters
    42
  • Poll closed .
MrMagoo

MrMagoo

Senior Member (Voting Rights)
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???????
 
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:
 
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:
 
JemPD said:
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.
Click to expand...
No worries, I read it that way!
 
There's a NICE care plan?? This is the first I've ever heard of such a thing.
JemPD said:
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:
Click to expand...
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:
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.
 
JemPD said:
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.
Click to expand...
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.
 
You must log in or register to reply here.
Back
Top Bottom