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

Again, it’s developed by medical professionals. Not to be filled out by sick patients who can’t get a medic to be bothered.

 

Oh my goodness. Where do you start with this and what is it trying to do, for whom and what purpose. It looks to me like it has been inspired to an extent by a DLA/PIP or Invalidity type questionnaire which is trying to elicit from the applicant what they can do, what they can’t and which aids/ adaptations and treatments might help whilst at the same time suggesting the answers they want you to give so as to match the compilers bias/care offer. You would be doing a dog a great disservice by serving this up for its dinner.

The over riding patient answer to such enquiries however they are framed and whatever activities are being asked about is I think, quite simply answered regarding ME:

Because of PEM the major symptom of ME, a patient cannot undertake any activity repeatedly and reliably as it is unsafe for them to do so.

Repeated activity beyond (their usual very/severely limited level) always results in a worsening of symptoms after a short delay which can last for days, weeks, sometimes months (before a recovery (sometimes never) to the previous (again describe level of tolerated activity).

For me a Care Plan for ME is about ensuring the patient has the support they need both medical and social so as to not exacerbate or provoke PEM or provoke their intolerance reactions to other environmental factors. @Kitty suggestions in her post above fit the bill nicely and are simply stated.

We do not know the cause of the illness and we do not have any effective treatments. Our only compassionate response in this scenario must be to help ME patients obtain the best quality of life they can manage, whilst the Medical Research community look to get answers as to causation. Medication if tolerated may help with some symptoms but needs to be introduced and used with caution to gauge tolerance and effectiveness.

The BPS brigade and the major ME Charities are to an extent in the same boat with ME. They very obviously currently don’t posses the skills or knowledge to adequately respond to this challenge. Jonathan seems to suggest in another thread that those medical scientists with the necessary skills and competence may be beginning to take an interest in this hot potato. I hope so as we have all been waiting a very long time for that to happen.

In the meantime it seems the best we can do is again repeat that these sort of collaborative efforts between the BPS and our major ME Charities, come with a significant health warning for ME patients. Patients do have the choice not to engage or support them in these activities and I think S4ME as a body would be justified in making their concerns about this initiative known.

 

I dislike both - re-inventing the wheel and tinkering around the edges. This could be either.

 

Ok but that makes it even more vital that they start describing when a deterioration (which might initially have been PEM or overdone it and maybe I’ll recover)

and that they define crashes vs flares (don’t like that term but seems something else specific to do with symptoms vs exhaustion) in terms patients can live with and where everyone is agreed on what they mean.

I’ve had significant deterioration described as a relapse when I’d tried going to the gym after I’d been getting more and more ill over years, so it was just actually a further even faster deterioration

allowing these terms to be officially misused in medical notes gives the appearance my ME suddenly went away in the middle of that. And infers where I ended was just where I’d begun at first visit. As if someone had improved me in the middle.

if there are different types that’s likely incredibly important if we are ever going to understand the illness and the types . So they need to start putting in documents that there is the relapsing remitting type , and not making up a guess of their own (which will be wrong as they won’t/cant do methods) as to what % are that type.

it’s pretty shocking we’ve such a serious condition and the medical profession has been encouraged to not keep these records vital to prognosis.

we can’t keep having deliberately ambiguous and insulting terminology that was there to mislead into seeing it as mental health. So they need to term relapsing remitting and have a term that makes it clear it applies to that.

 

BACME have links with Vitality 360; AfME have historical connections with O'dowd.
see tags o'dowd, vitality 360, afme,
and this thread, only last year
United Kingdom: Vitality360, a private company treating ME, fatigue and pain | Science for ME (s4me.info)

 

Yep I think there are certain power bases including this that had been allowed to prosper under the old regime

I’d be interested in a chart to see how many in BACME aren’t working under one of those so that their job depended on following what those who’d grown a business or kingdom or research career out of the old stuff

We’ve got to stop this idea anything in the new should be based around the need of a small niche of people looking to prosper from their pushing their mind-body crud and psychosomatic

it’s time to stop the gravy train and note this is about the patients and the taxpayer getting something that at least makes sense for an illness not subbing / sponsoring someone in their supply led stuff.

We need anyone writing these to have if they didn’t call it out before the new guideline have -made significant action to show they are now basing their knowledge and focus around it being a condition where the issue of PEM snd thresholds is the primary feature . And that isn’t some half hearted fop saying ‘we’ll GET em gentler next time’ that’s a line demonstrating fingers in ears can’t read. It’s not acceptable three years on.

they should be being let go after reprogramming/re-education to remove their bigotry. Or at least highlight their flase beliefs are unacceptable to them. Not paid to update their propaganda.


This bloke and others are doing PR strategy 101 when you don’t want to change at all but can see an opportunity to pretend the old is the new

sorry but it’s time if the charities won’t do it then the government has to bring the gravy train to an end - these people leave people worse off after taking money on promises to others ‘we’ll be dealt with’ and have left us in a disastrous situation with no stats. Now the charities are letting the control what is measured because the calculated (or kidding themselves in denial) so and sos moaned and pretended the ‘what’ they offered didn’t matter/wasn't the issue it was the ‘delivery’ - the charities confirmed they were at odds with that BS, and were behind the guideline being 'no treatment or management based on a paradigm of false beliefs or deconditioning' so why are they sponsoring propaganda based on it and measures that will conceal it’s ineffectiveness?

That line was to set down very clearly indeed a 'spirit' to ensure they didn't work around with the letter. And all these people have shown is the bold-faced gall to invent another psychosomatic paradigm to pretend its still 'mind' and something invented 'dysfunction and over-alertness' to pretend it can somehow create the level of exhaustion and symptoms, anything other than the thing that adds up which is PEM. And try and keep themselves in business.

Let's not forget they didn't even pause for a moment to take in the lessons they were supposed to heed from the message of the new guidelines, because the BACME dysfunction paper (which if I remember correctly was authored by UG students): https://www.s4me.info/threads/unite...clinicians-in-me-cfs.7900/page-11#post-416025 was being written whilst the guidelines were still in discussion - but I suspect late enough in they realised that some 'new twist/reinvention' would be needed.

this and PROM is just what Crawleyvet al (2013) inc Peter white we’re trying to sell as their error because there was no change in the functional measure of SF36. Just the fatigue scale. So they suggested a prom to measure ‘delivery’ instead of usefulness and whether it helped.

Oh and not to forget that in the middle of this was when Gladwell's papers actually were signed off (even though they weren't published until 2022) and were done a lot earlier than their pubilshed date. So seem to be a continuation of this, before the guidelines ie as if unaffected by the guidelines changing radically in paradigm to the new ones: https://www.s4me.info/threads/uk-me...alist-services-2023.33221/page-22#post-525535

So they rewritten measures to hide that it’s now moving to be this new thing those two were proposing when they did basically an arm of the same trial at the same time as PACE and realised it didn’t give the numbers they needed so wanted to change the measures.

There wasn't room or a need for these 'professions' when the guideline was written, and people were either too kind or it was too much of a political construct that those people were allowed to stay in their roles and expected to step up and be responsible and re-train and start making their jobs about adjustments, letters and sensible support in management instead of lazy courses.

Who knows if those lower down the chain would do the same because I doubt they get a voice either. But to me this is pure opportunism.

I can’t believe those in these charities haven’t read those papers so what are they up to in sponsoring this?

 

All i can say is i hope nobody ever asks me to fill out this patronising, absurd document.
Its written for the DWP. I may as well just send you my PIP application it lists all the same stuff. There is no 'plan' in there, unless you seriously want me to write down that i sit while waiting for the kettle to boil.

 

indeed. my surgery sent a referral to a specialist recently (for colonoscopy) and on it there was a section for 'mobility', they filled in 'no problems with mobility'. I have been in a wheelchair for nearly 20yrs ffs!

So yes something like that would be good but...

 

Exactly—the only sort of care we're likely to get is for things other than ME/CFS, so the best way to complete a care plan is to say in brief how it (and any other long term conditions) affect us and what our needs are as a result.

Anything else is just performative, and doctors aren't seriously going to read a long, wordy care plan in any case. It would take up half the appointment, and still tell them bugger all.

 

@bobbler wrote:

"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 .... "

"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?"


This



We are now being sold down the river yet again by AFME and the MEA.... Yet Again.

There are No More Excuses for any ME charity to continue to 'work with' BACME, (edit add) OR with the North Bristol NHS Trust’s Bristol M.E. Service .

.

 

The me:cfs specific part should be that it is aiming to keep us out of PEM , so focused on energy reducing /envelope support too ie avoiding the ‘but if you get a wheelchair then you’ll get out of the habit of walking’ type nonsense

 

Oh and I bet it’s being used - that deliberate misuse of words to encourage GPs to write false/inaccurate notes - to screw those applying for things like early retirement or PIP both by using it against the person them self even if they’ve never improved just gone due. Over twenty years but it’s made to look like ‘they might recover/improve’ . And probably used against others apps ‘no evidence you don’t improve’

it’s extremely important the relapsing remitting is fished out and sensible language that doesn’t make going diwnhill then sound like being fine with the odd hiccup. It feels like fraud when you think this might have been pretty calculated

and even more disgusting when you think said people did it bevy they had unexplained dislike for us and wanted to elicit the same disdain towards us in others vs just allowing GPs to use their eyes and words in describing what we suffered.

It’s now the deepest of deep epistemic injustices that it’s hard to live with and is the most deep violation taking away my truth from everything - just fir a few con artists playing games thinking it’s funny to help them make a quick buck.

Now I’ve a record written that doesn’t make sense to illnesses I had and what I went through and the narrative doesn’t make any sense and back up what was a logical truth if it happened to anyone else their body would be the same , it’s been hell. Yet they designed it so the records will read as if it wasn’t taking away my chances of ever having a life. As if there was no neglect and rewriting so it looks what like I just gave up one day

I slaved to attend a job whilst I was iller than this guy has ever been for a week, and did it better, as my body screamed in pain and went downhill and these people colluded to make it historically look like none of that happen. And how did she end up unable to sit up for an hour most days having. NO money or family for all the pain snd effort she put into life whilst getting abuse and threats due to them

and too many just laugh at the situation because people like this focused their efforts on spin and pr so no one heard the truth just to remove sympathy or shock.


I don’t want these harmful people - who are sick with false beliefs and need very intensive treatment as his delusion is still theee - anywhere near the vulnerable, and they made us so much more vulnerable than other ill people it’s so sickening

how can a charity commit this sin. But for both it is inexcusable and worrying what is going on - is it coercion or something else it makes no sense they’d do something so dangerous to their constituents when they know and can’t deny how harmful this all this

what’s going on?

the hell has been continued and we’ve been handed over to the paternalist sickos by the charities

they’ll never give me any help or a life but now the charities in one swoop have let this guy keep rewriting my life story. And if they don’t understand how deep and disgusting a crime that is they shouldn’t be anywhere near us

people like this mean that we even in death will never have peace. We don’t even have right to not have who we were gerrymandered and removed like some sick disgusting vile violation

and boy he’s definitely making sure who we are we don’t get control of anymore. To me this should absolutely be a very very serious crime. It’s a form of identity theft in the deepest most violating way. I don’t know how else to describe the intent behind it and how cruel it is

 

the use of the term 'boom-and-bust' is for me an automatic red flag as to where the information is coming from.

These lengthy plans are pointless until the key issues around pwME needs and disabilities are correctly known/accepted by medical professionals.
I think some of it is getting through but is muddied by the BACME style information that is so prolific and unfortunately often still used by the charities.

By key issues I mean;
1)a clearer and better means of rating severity and better acknowledgement that there are a lot of people who are between 'mild' and severe who, like the majority of pwME, are unable to work.

2)we all have issues with mobility; this is not just getting tired. (I think Sarah, Maeves mum, talked about this in one of her interviews, that Maeves legs would simply give way as there was no energy)
3) most of the time pwME will suffer an increase in symptoms following a difficult day (I'm trying to come up with something other than stressful) eg a hospital appointment.

GPs really don't seem to get this at all.

4) worsening cognitive issues, ie thinking, speech etc.
this is particularly important if crucial information, or instructions are issued during an appointment. Best to write them down to review at a later time.

This is just a quick thing off the top of my head; there are other things obviously but I hope you get the gist.

 

Thanks for pointing all of this out, but particularly this one-liner.

I think it underlines an attitude - there is so much underneath this I think it might be worth a page just because dissecting it in itself as an example could pull out quite a lot of the issues going on.

in one part a CBT attitude of the writer who hasn't listened properly and just wants to grab some off-the-shelf best-fit that happens to have some easy 'advice' solution insinuated with it as 'good enough' - too many people are happy to 'reframe' something that it is encumbent on them as their job/role (which could be social contract as in being a good friend or relative) to do properly into some slapdash 'ticked the box' version, then walk off self-satisfied that they 'did something'.

It's a massive passive-aggressive slap in the face that we then get stuck with that inaccurate presumption. It also always just happens to fit well with said person's wish to assume their own problems are bigger and less solveable ergo that person is 'lesser' than them even when the evidence is the opposite

Boom and bust is about infantilising us turning what is an illness situation flagged because 'a small/normal amount sends us into illness and a pattern of issues in our body that we have to deal with that are nothing like those who aren't ill' into someone acting superior as if we just need to be treated like small children and told to go to bed earlier and not get too 'hyped up'. It's revolting. But boy is it enticing to some of my more unpleasant friends.

It says it all about how they 'see us' rather than 'understand the condition', and it shouldn't have to be said that they should have respect for us as individuals - which very much would start with how bothered they are about our voice and representing that with utter due care given what they've played their part in putting us through. But I think this shows a difficulty in their changing that mindset to change their relationship - and I'm not surprised because those who've been attracted to a role which has 'all power' over people with its insinuations if someone disagrees respectfully then it must be them, are rarely going to be happy switching into a position where they realise the knowledge comes from those people and active listening and respect for said knowledge needs to be their attitude.


Now it is at least surely confirmed and acknowledge that this is actually an illness, an actually issue with the body, we can stop and chuck out all of these people wanting to recycle useless tripe thinking its genius whilst we ask for even being able to start the job with even just the problem-framing start of solving the issue to be sat down and done properly but they are like distracted harry half-jobbers.

There are enough people and organisations who have now managed to show it is actually possible when you get someone who hasn't got either a major listening issue or a massive bigotry which assumes we don't deserve our words to be heard 'because we don't know our own bodies like they do' the jig should be up on giving these people a voicebox over us.

 

This is far better you should stick that in a word temple and publish it..