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

[Andy]

Moderation note: The overwhelming response from members has been that this document is not fit for purpose. If people are considering using the template or recommending it to others, we suggest first reading member comments in this thread.
Update 5th September. AfME has withdrawn the document. See this post:
https://www.s4me.info/threads/open-...upport-plan-template.39894/page-2#post-551858



"People living with ME/CFS have worked with Dr Pete Gladwell, Clinical Specialist Physiotherapist and North Bristol NHS Trust’s Bristol M.E. Service Lead to develop a Care and Support Plan template with input from Action for M.E.

The 2021 NICE guideline for ME/CFS recommends having a personalised Care and Support Plan to help manage symptoms. It says:

"This should be developed based on a holistic assessment as soon as the person's diagnosis is confirmed. The committee agreed that a medical assessment should be part of this assessment, typically requiring access to a medically trained clinician.”

However, we know some people with ME/CFS face barriers to accessing this sort of support. If this is the case, you could develop the plan with support from a carer, family member, friend or other professional.

The guideline makes it clear (section 1.5.3) that health professionals should: “recognise that the person with ME/CFS is in charge of the aims of their care and support plan.”

It also recommends they offer to review the plan with you at least every 12 months for adults, and six months for children and young people."

More at https://www.actionforme.org.uk/news/care-and-support-plan-template-free-to-download/

 

[bobbler]

"People living with ME/CFS have worked with Dr Pete Gladwell, Clinical Specialist Physiotherapist and North Bristol NHS Trust’s Bristol M.E. Service Lead to develop a Care and Support Plan template with input from Action for M.E.

The 2021 NICE guideline for ME/CFS recommends having a personalised Care and Support Plan to help manage symptoms. It says:

"This should be developed based on a holistic assessment as soon as the person's diagnosis is confirmed. The committee agreed that a medical assessment should be part of this assessment, typically requiring access to a medically trained clinician.”

However, we know some people with ME/CFS face barriers to accessing this sort of support. If this is the case, you could develop the plan with support from a carer, family member, friend or other professional.

The guideline makes it clear (section 1.5.3) that health professionals should: “recognise that the person with ME/CFS is in charge of the aims of their care and support plan.”

It also recommends they offer to review the plan with you at least every 12 months for adults, and six months for children and young people."

More at https://www.actionforme.org.uk/news/care-and-support-plan-template-free-to-download/

OK I'm picking up on their working with Pete Gladwell

What have I missed - why are both charities now working with him?

Is he radically changed or different to what I'm assuming?

 

[Trish]

Gladwell is a senior member of BACME, he has also for a long time advised AfME on their documents about ME, including their very lengthy pacing booklet which has been improved somewhat but still, as far as I recall, recommends pacing up.

In his role at BACME he's part of their collaboration with the MEA and Sarah Tyson on the problematic clinical toolkit project which is producing lengthy questionnaires.

I've started looking at the care plan linked on this thread. It's far too long, and has some wordy explanatory sections, including this as part of the section 3 How my health condition(s) affect me:

The exact mechanisms underlying M.E. are still unknown. 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.

With M.E., the body’s systems are thought to have become poorly regulated and hypersensitive. The body is in a constant state of 'high alert', almost as if a switch has been thrown and the whole system is in a state of emergency. This is thought to be why the smallest of stressors such as noise, light, or physical/mental activity can have a big impact on the symptoms of M.E. Often too much stimulation from these can result in me feeling worse the next day.

That's surely got to go. It's a mix of dumbed down 'complex mechanisms deep inside us' and just plain wrong stuff about sensory sensitivities being due to being in a constant state of high alert.

 

[MrMagoo]

This is a care plan
BACME has a care plan
My local service has a care plan they’ve said I can fill it in myself (collaborative?)

why are these people constantly tinkering with these voluminous paper documents, which no medical professional cares about, and why are we expected to complete them? How about designing a care plan with pwME involved, and tackling why medics won’t fill them in.

 

[Kitty]

How about designing a care plan with pwME involved, and tackling why medics won’t fill them in.

Care plans seem to be a bit like emergency evacuation instructions. You put them up on the wall because the rules say you should, not because anyone will read them or notice they're there.

 

[Andy]

The problem with a standardised care plan would be the differences between the severity levels and individual patients - no one plan would cover the range of possibilities.

 

[MrMagoo]

The problem with a standardised care plan would be the differences between the severity levels and individual patients - no one plan would cover the range of possibilities.

It’s ok the collaborative medic who is working with you to fill it in can delete the unnecessary parts.

 

[Sean]

With M.E., the body’s systems are thought to have become poorly regulated and hypersensitive. The body is in a constant state of 'high alert', almost as if a switch has been thrown and the whole system is in a state of emergency. This is thought to be why the smallest of stressors such as noise, light, or physical/mental activity can have a big impact on the symptoms of M.E. Often too much stimulation from these can result in me feeling worse the next day.

Thought by who?

I guess it is an improvement on 'feels'. /s

 

[Nightsong]

With M.E., the body’s systems are thought to have become poorly regulated and hypersensitive. The body is in a constant state of 'high alert', almost as if a switch has been thrown and the whole system is in a state of emergency. This is thought to be why the smallest of stressors such as noise, light, or physical/mental activity can have a big impact on the symptoms of M.E. Often too much stimulation from these can result in me feeling worse the next day.

I'd be interested in hearing how the author thinks that this all works, physiologically speaking. In detail.

Also is this stress-response theory AfME's official position too?

Physically doing my treatment(s) (sometimes/always)

What treatment?

experience PEM for a few hours/days afterwards

Can be longer.

I therefore want to avoid the scenario of 'boom-and-bust'

Should be made clear, at the least, that not all pwME experience this.

and work towards an improvement in my health

Unevidenced.

Baselines change over time and for some people – but not everyone – they can be slowly increased by consistently undertaking an activity.

Unevidenced, and certainly not in my experience. Graded doing therapy?

 

[Lou B Lou]

It's BACME-Speak, still using trivialising language, favouring so called 'central sensitization' as catch all explanation, PEM lasts only hours or days (never weeks months or for ever), and pushing graded activity or what Sussex NHS calls 'Building up your Baseline'.

AFME:
'Baselines change over time and for some people – but not everyone – they can be slowly increased by consistently undertaking an activity.'


..............................................

Sussex Community NHS do Graded Activity. It's goal oriented, with a timescale.

They call it Building Up Your Baseline.

This Sussex 'ME/CFS/Chronic Fatigue' service is still obsessed with GET


https://www.sussexcommunity.nhs.uk/...s/patient-resources/building-up-your-baseline

https://www.s4me.info/threads/nhs-s...hronic-fatigue-service-cfs.39707/#post-548051

.

.

 

[Trish]

I had a quick look at the survey Action for ME have set up for feedback. It's far too brief and has leading questions.

I feel a letter coming on.

I'm sad AfME are pushing this.
I think it reflects BACME's lack of understanding of ME/CFS, and of scientific rigor.

It's all very well saying it was designed with patient input, but from what I have seen of BACME and Gladwell's idea of patient input is rhey design stuff then ask a few new patients coming to their clinic to give feedback, rather than asking experienced patients to point out all the problems with it.

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

I'd also like to know how Gladwell thinks this fits with the Tyson/Gladwell, MEA/BACME toolkit questionnaires.

 

[Jonathan Edwards]

Physically doing my treatment(s) (sometimes/always)

What treatment?

Funny how that gives the game away.

The entire thing is an exercise in multidisciplinary team (holistic) marketing to ensure that the team goes on having a job by ticking the right 'done that' boxes.

As a doctor I never had any use for documents like this.

 

[Jonathan Edwards]

I think a letter would be good idea. Maybe something should come from S4ME officially.
I get the impression that both MEA and AfME are falling for this multidisciplinary care plan garbage.

 

[Andy]

It’s ok the collaborative medic who is working with you to fill it in can delete the unnecessary parts.

But your proposed standardised plan would be complete, so there would be nobody to 'working with you' to fill it in.

 

[Jonathan Edwards]

Apart from anything, amongst this long list of things the patient is supposed to fill in there is no evidence whatever of any CARE AND SUPPORT PLAN. It is just a dummy placebo form.

 

[MrMagoo]

Why does this care plan refer to exercises?

 

[Lou B Lou]

Why does this care plan refer to exercises?
View attachment 22797

Because the Care Plan writers's thinking is still embedded in the 'pwme are deconditioned and deluded, therefore need physical rehabilitation' ideology.
.

 

[bobbler]

I had a quick look at the survey Action for ME have set up for feedback. It's far too brief and has leading questions.

I feel a letter coming on.

I'm sad AfME are pushing this.
I think it reflects BACME's lack of understanding of ME/CFS, and of scientific rigor.

It's all very well saying it was designed with patient input, but from what I have seen of BACME and Gladwell's idea of patient input is rhey design stuff then ask a few new patients coming to their clinic to give feedback, rather than asking experienced patients to point out all the problems with it.

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

I'd also like to know how Gladwell thinks this fits with the Tyson/Gladwell, MEA/BACME toolkit questionnaires.

These super-long things just show the lack of knowledge and genuinely anything new to offer - it's just either 'don't really know what they are measuring or doing' or trying to hide it in the same way you hear of lawyers using the tactic of burying the other side in paper so they don't find the needle in the haystack red flag document when they ahnd over discovery.

Good surveys and good plans have focus and don't have ambiguity - because they know what they are doing and are up-front and transparent. Maybe the new guideline needed to emphasise that dishonesty with patients needed to be one of the significant changes also. I guess they saw it as read and a basic.

This is hardly going to make us look like good communicators. All because the person behind it doesn't want to make the understanding of ME/CFS as simple as it can be: an energy envelope issue. Why should all this waft reflect on us?

Start insisting there is some compromise with the old crap and of course it gets 'hard' because it's then a political construct and not a medical condition. After all we've been through why is it encumbent on those harmed by the people of BACME and their 'good intentions' to go through all of this and jump through these hoops to do them a favour?

I'm sorry but this is about 130 people in BACME max and their needs, and not the pwme. Probably even less, ie the ones with the power who are the bosses of others (who knows what the others think but they need their jobs). I don't care how much they've 'compromised' in their strange new belief system to try and avoid their cognitive dissonance and put a few crumbs in for us, but it shouldn't be our job to be made to look really complicated and strange just for that.

Let's ask AfME to find someone who will make these things simple. I think the clinics need a re-org. I think there might be some from old clinics who will be glad to leave all this behind as long as they aren't bullied out of their jobs.

And the ones who made their fortune building kingdoms shouldn't be figuring into all of this. They are only going to change their mindset and maybe their business plans (either new market, or who knows they might get with the programme) once they realise things are going to change in a way that doesn't centre around their needs.

 

[bobbler]

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'.

 

[bobbler]

Because the Care Plan writers's thinking is still embedded in the 'pwme are deconditioned and deluded, therefore need physical rehabilitation' ideology.
.

Yep, from his research and what he has been pushing since 2013 Gladwell's spiel has been to claim (along with the Crawley et al paper 2013 that included White, when they realised it didn't work 'contrary to PACE') it's not the 'what' that's being offered that doesn't work, it is just that they need better control over those who deliver it

SO I think this man believes the whole issue with PACE and anything else was just some 'doing it wrong'. I'd very much like if there was a way to do a survey and get feedback from those who attended his clinic, because we all know if you are a certain bombastic type of character then you can get the people who do keep turning up saying 'oh of course this is great' (without realising it's all social pressure, coercion and belief that 'the hurt doesn't harm' until it hits six months later)

but they tend not to make a point of challenging their own confirmation bias by having an independent follow-up 1,2, 5yrs later where people might feel safe to give honest answers to find out what the actual effects were.