Care and Support Plan template free to download, Action for ME

Omg what an awful document.
I would not let my Dr near this as it would just confirm his prejudices about ME. I want something that rejects that outmoded viewpoint. This was an opportunity to educate doctors but instead does nothing but reinforce old stigmatising ideas in deliberately veiled language.

It should not be encouraging "disguised GET" lite terms like pacing up or building up baselines. It should be talking about stabilisation and that some do improve with time naturally with good pacing.
 
I think we need to see what care plans are supposed to look like.
I’m googling and there’s a number of stumbling blocks in that they’re all described as
a) facilitated / collaborative conversation between NHS or Social Services and the patient
and b) documenting the care and treatment someone is receiving

As nobody wants to bother to colllaborate with us and we don’t receive any care or treatment, it all seems moot
 
bobbler said:
It feels like Gladwell has a vision 'for the next generation of ME/CFS rebrand' and I'm finding it scary that he is being worked with by both MEA and Afme given I suspect he has been pushing for just a few tweaks and a rebrand 'because it still works, we just measure it wrong' since 2013 when I think the papers show those who were involved in PACE knew it didn't really work and were already looking at their next move to keep it going for when that came out. ie what they were going to 'answer' to the harm.

And I think Gladwell is from the 'yeah it was just others doing it wrong' school of denial. I've seen no real enlightenment from him. And reworking his disparagement and suggestions of the mind just not working right into different words as if the same tactic to silence us and remove our testimony is unacceptable, even if he does the usual fake sop to others pretending 'it's cos he cares'. It's also concerning given his lack of evidence ie it hasn't come from any science or genuine observation so is just 'in his mind', that someone has been allowed to get this out of hand - it's not good for him.

Maybe others don't say it because you need a psych degree to feel allowed to say this is just trying to step in and get to earn what Chalder did from her nonsense about us, with a slightly different enough storytelling that maybe laypersons and pursestring holders think they need to spend money updating their textbook to the next version. If the only way they 'prove' their theories was by testing the 'treatment' (and used v poor methods for that) and he isn't actually changing the treatment, just the fairytale behind it people need to stop falling for the fact he's actually selling something that has been actively de-bunked just putting a new story on it. WHich doesn't make those end results any different ergo no less debunked. It's an approach that has no relevance to the condition no matter how 'persuasive' as an idea to 'do to others' the sales spiel behind 'what this man making his career out of us' sounds.

Why are they propping him up in what looks like someone desperately in denial 'bargaining' to keep all his old stuff that has been proven wrong? - and yes it is time we talk about how harmful and unconscionable all the BS 'mind' stuff he's plopping out to stick onto other human beings is. Yes, let's start feeding back in a powerful way and if he genuinely has 'good intentions' then he would change what he does and outputs, if it's that he's 'puzzled'.
Click to expand...
Good point, Gladwell is all over the NICE gaps - first the PROMS to create a “data set”, now a care and support plan.
 
Also, I’d just like to say -When I’m asking for a “care and support plan” which incidentally I’ve been asking the NHS for recently, I’m not asking because I want a form.
I’m asking because I want the actual care. And support.
 
It's about as bad as it could be, isn't it.

Do people think a very brief document about a patient's status would be useful for GPs, though?

I don't mean a care plan—there's no care available, and I wouldn't sign anything suggesting there is—but I've moved GP surgeries recently and I can see it'd be helpful to have a few facts appear as an addendum to the summary patient record.

It doesn't need to show medication or diagnoses, as they're already on the record. Additional things I'd include might be:

ME/CFS notes
Moderately affected, broadly stable
Powered wheelchair user
Lives alone, currently self cares
Partly housebound
Unable to work
Significant food intolerances
Has necessary aids & adaptations
Has care alarm

ME/CFS risks
Would need social care if condition worsened
History of falls
 
Kitty said:
It's about as bad as it could be, isn't it.

Do people think a very brief document about a patient's status would be useful for GPs, though?

I don't mean a care plan—there's no care available, and I wouldn't sign anything suggesting there is—but I've moved GP surgeries recently and I can see it'd be helpful to have a few facts appear as an addendum to the summary patient record.

It doesn't need to show medication or diagnoses, as they're already on the record. Additional things I'd include might be:

ME/CFS notes
Moderately affected, broadly stable
Powered wheelchair user
Lives alone, currently self cares
Partly housebound
Unable to work
Significant food intolerances
Has necessary aids & adaptations
Has care alarm

ME/CFS risks
Would need social care if condition worsened
History of falls
Click to expand...
I know there’s a “disability passport” for workplaces and reasonable adjustments.
I thought there was going to be something similar for GP/Hospital (just trying to avoid re-inventing the wheel/ another iteration of an existing document- looking at you, Gladwell!)
The Hospital Passport seems to be for learning disabilities
https://www.england.nhs.uk/6cs/wp-content/uploads/sites/25/2015/03/healthcare-passport.pdf
 
Amw66 said:
This
It's simply the king is dead, long live the king ...
Click to expand...
that exact same phrase came to me also about an hour ago.

last thing we want is someone planning to do the same as the last lot did. It isn't supposed to be about someone who isn't a patient using this as an opportunity (or of course any individual patient) to have the same power and kingdom as before.

why do we have one old guard person who never left the old guard just being left to dictate all the 'new'

they should just have been firmly removed from the area. And removed from any control voice-wise over the vulnerable group that we are - made so vulnerable and in need of protection due to exactly this sort of gobbledigook writing about us

One thing we have from them letting him do this is that at least they and us should now be able to say 'he was given a chance and showed he couldn't change his spots'.

ie proven they are incapable of being anywhere near this. And need deprogramming to stay in any role where they are around any type of patient in order to make sure if moved to another role their misthinking can't do harm.

There needs to be someone fresh, who is supposed to then be deprogramming these people of their false beliefs - all of them, including any made up new ones they concoct in their minds to justify they can still hold onto the bigotry and pretend it isn't bigotry about us.

The need for changing one's false beliefs and mindsets was clearly set as being something that the staff needed to now do. Why is noone else saying 'heck what this is just pure bigotry'?... or madness if we want to be kind and say its an illness of their thinking they've gotten themselves into. But it needs to be tackled not just left with a 'they've said they've changed so we left them in charge'.

WHy is there no serious and intensive programme - starting with something along the lines of what you get in courses about how bigotries develop that you would get as a bare minimum just to be on an interview panel for any job. Next there needs to be strong coaching on being able to hear, so that there is no more of them not being able to listen to the actual words said and take them in from patients - because they don't want to and believe that segment don't deserve the human right of a voice.

This fop BS pretending to have a patient voice thing is so utterly crooked. Grabbing a few pet patients, or newbies who haven't learned the long term effects as they haven't experience them yet or who mightn't have PEM themselves and not doing proper patient-led from those qualified by sufficient experience is a joke. And it doesn't protect the vulnerable patients they've created. WHere is the safety in all this?
 
Last edited:
Earlier this year I was called for jury service.
I moved here after leaving work following a year on sick leave.
I've never seen a GP since I've been here as I no longer needed 'Fit notes'. My only contact with the surgery has been the practice nurse for a new patient appointment & routine screening. My intention had been to avoid any medical contact re my ME. I'm moderate.

A brief summary as @Kitty describes would have saved me a lot of stress when asking for a letter, of trying to get across in a phone appointment the difference between being able to go out for short periods to local shops or a friend's house a few times a week and doing a 60 mile round trip by public transport to spend a full day sitting & concentrating in court on successive days.
 
There is a strong point to be made too that Gladwell seemed to be developing all of this before the new Nice guidelines, and an important part of that was defining the condition, emphasising PEM and calling out the past research was based on recruitment that did not require PEM.

All of Gladwell's theories and experience is based on that old definition. HIs centre is a fatigue centre. This doesn't, as it should, begin with a strong description of the issue being to 'avoid PEM'.

He just doesn't know his stuff.

This would be 'superfluous flimflam' if it wasn't misinformation which leads to inappropriate and harmful care, abuse and labelling of the type we have seen all too much as a daily occurence we battle with. It's frankly disgusting and anti-psychology to just go around name-calling and spouting made up ideas. But to do it to a group who've been trodden into the ground by exactly that is unforgivable.

There is no room for someone with his background and beliefs and 'skills'. I don't know what type of psychology he thinks he did but it wasn't the proper one where you focus on methods and don't go around suggesting things about others without knowing, properly, the area you are talking about. This is nonsense, untested tripe. And we've got an absolute right to be bored of this.

None of it is 'helpful' and I don't believe anymore it is intended to be, unless he is deluded and therefore a bigot because that would mean he believes it about a group of people with a biomedical condition that doesn't cause distortions of their mental health. It's frankly weird and irresponsible. And I'm shocked that the official psychology societies aren't finally standing up against this sort of thing.

Made up stories about people being spread around do significant harm and are unkind, and need to be stomped out. It doesn't make it OK whatever claim your background is, if there is no decent method behind it it's just a propaganda manifesto against a group of vulnerable people for some sort of agenda.

I'm bored of anyone letting them get away with nonsense excuses where people claim they thought it was help, or BS about good intentions even though he's been doing this for decades and hasn't done proper long-term follow-up and discussions in scenarios where there are the sickest and everyone is safe from coercion and perceived risk. That's just not being interested in treating and understanding the needs of that 'target market' he claims to put down. It's not how things are or should be done anywhere.

Compare this to how @PhysiosforME go about things.

He's not up to the job, if the job really is what AfME say it is.
 
A few more things I noticed:
complex multisystem disease
Click to expand...
*sigh*
Our current understanding is that the nervous system, the immune system and possibly the endocrine system are likely to be involved in M.E. These complex systems operate at a deep level inside us. For this reason, I may look well on the outside, even if I am having a really bad day.
Click to expand...
This really doesn't follow. There are plenty of disorders of the nervous system, immune system and endocrine system that have very visible symptoms and where sufferers do not look visibly well: I could list dozens of examples.
A key feature of M.E. is post-exertional malaise (PEM) which is the worsening of symptoms that can follow any increased cognitive, physical, emotional or social activity.
Click to expand...
Might be useful to bring this, and a number of other definitions given, into line with the NICE guideline with its separate definitions of PEM, relapses, etc.

There's a number of places where it's clear the author doesn't understand the severity / how long exacerbations can last, e.g:
Often too much stimulation from these can result in me feeling worse the next day
Click to expand...
Again, not just the next day. There's also lists of things that pwME might find "a challenge" "sometimes/always" - one can find something a challenge but still be able to do it; there should be room for "can't do this at all" as an answer.
I find food preparation a challenge (sometimes/always)
I find cooking food in a conventional oven a challenge (sometimes/always)
...
Click to expand...
The "additional support" section also seems very focussed on people with mild/moderate ME. For example, the list of "additional things around my home that I require regular help with" doesn't include a lot of the things I need help with as a severe pwME, and it doesn't come close to touching on the needs of very severe pwME.
 
Last edited:
Trish said:
I feel a letter coming on.

Keep adding critiques here. I might have a go at a letter to AfME and Gladwell.
Click to expand...

For anyone considering writing a letter, one of the things it's worth looking at is the background information about the NICE guideline. This refers to care plans being created for people attending NHS specialist services. I don't think it says anywhere in the care plan that it would only be compiled by a specialist service, not by a GP, but that might be the inference. If so, it would suggest that it's yet another development that's only aimed at newly diagnosed people.

Introduction
The NICE Guideline for ME/CFS published in 2021 suggests that a Care and Support Plan is developed for each person attending a specialist NHS Service, following a diagnosis of ME/CFS.
Click to expand...
 
Nightsong said:
A few more things I noticed:

*sigh*

This really doesn't follow. There are plenty of disorders of the nervous system, immune system and endocrine system that have very visible symptoms and where sufferers do not look visibly well: I could list dozens of examples.

Might be useful to bring this, and a number of other definitions given, into line with the NICE guideline with its separate definitions of PEM, relapses, etc.

There's a number of places where it's clear the author doesn't understand the severity / how long exacerbations can last, e.g:

Again, not just the next day. There's also lists of things that pwME might find "a challenge" "sometimes/always" - one can find something a challenge but still be able to do it; there should be room for "can't do this at all" as an answer.

The "additional support" section also seems very focussed on people with mild/moderate ME. For example, the list of "additional things around my home that I require regular help with" doesn't include a lot of the things I need help with as a severe pwME, and it doesn't come close to touching on the needs of very severe pwME.
Click to expand...
We need to get rid of and ban the term relapse too

it was inserted to make it sound like a mental health condition with a mental health paradigm of ‘recovery’

and it’s misinformation that misleads as it is deterioration it is describing , physical deterioration ie illness getting worse or we’ve been so over exerted we are at long term a new level of disability

we’ve not ‘fallen off the wagon’ or ‘forgotten our coping mechanisms’

and vitally it’s this leads HCPs to believe they didn’t see us because we recovered not because we stayed just as disabled for however many years. They created this illusion people went off to a clinic and got better rather than getting the message they weren’t welcome and actually got worse and it was a useless offering
 
Kitty said:
For anyone considering writing a letter, one of the things it's worth looking at is the background information about the NICE guideline. This refers to care plans being created for people attending NHS specialist services. I don't think it says anywhere in the care plan that it would only be compiled by a specialist service, not by a GP, but that might be the inference. If so, it would suggest that it's yet another development that's only aimed at newly diagnosed people.
Click to expand...
And if written for GPs then taking your list is much better.

gp already has various flags inc notes about people who need more time or slow speaking where they struggle with communication

and probably lots of other things. And if it’s only the good ones then using those terms mean the less good ones might get into line and won’t be so shocked at the ask if they liaise with colleagues from other places

the main blurb needed is a link to the PEM stuff on physios for me, workwell research on 2 day cpet, Amy Mooney stuff

all this other crap is like when they’ve taken CBT being allowed to stay in ‘just for those who have additional grief’ in the guideline then insisting it sits as some sort of primer pretending psych helps with ‘symptoms’ when it generally only uses paradigms that are inappropriate for things like sleep or pain when it’s linked to PEM so sleep hygiene would make things worse if it cuts down on naps and doesn’t understand extra rest is needed and reduction in exertion


It feels deliberately full of red herrings

imagine the main thing you need from gp is a note to your employer for adjustments and they are sent this by a clinic? It’s going to cause havoc
 
bobbler said:
We need to get rid of and ban the term relapse too
Click to expand...

bobbler said:
and it’s misinformation that misleads as it is deterioration it is describing , physical deterioration ie illness getting worse or we’ve been so over exerted we are at long term a new level of disability
Click to expand...

This'd be problematic for people who have relapsing/remitting ME, though. That's been my pattern since onset, and it'd be difficult to describe temporary relapses as deteriorations, if other pwME use deterioration to mean permanent or very long term.

Relapsing/remitting is used in some other illnesses with no reference to mental health, so I'm comfortable using it. I find it the most understandable term for healthcare professionals and friends alike.
 
bobbler said:
We need to get rid of and ban the term relapse too

it was inserted to make it sound like a mental health condition with a mental health paradigm of ‘recovery’

and it’s misinformation that misleads as it is deterioration it is describing , physical deterioration ie illness getting worse or we’ve been so over exerted we are at long term a new level of disability

we’ve not ‘fallen off the wagon’ or ‘forgotten our coping mechanisms’

and vitally it’s this leads HCPs to believe they didn’t see us because we recovered not because we stayed just as disabled for however many years. They created this illusion people went off to a clinic and got better rather than getting the message they weren’t welcome and actually got worse and it was a useless offering
Click to expand...
Relapsing/remitting is standard though, it’s used in MS
 
You must log in or register to reply here.
Back
Top Bottom