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

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.
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Again, it’s developed by medical professionals. Not to be filled out by sick patients who can’t get a medic to be bothered.
 
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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.
 
Kitty said:
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.
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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.
 
Sly Saint said:
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)
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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?
 
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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.
 
Kitty said:
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.
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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...
 
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JemPD said:
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!
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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 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'.
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@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 .

.
 
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Kitty said:
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.
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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
 
bobbler said:
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.
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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
 
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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.
 
This is what the NICE guidelines say about Care and Support Plans

1.5 Assessment and care and support planning by an ME/CFS specialist team
Also see the section on care for people with severe or very severe ME/CFS.

1.5.1
Carry out and record a holistic assessment to confirm the person's diagnosis of ME/CFS and inform their care and support plan. This should include:

  • a medical assessment (including relevant symptoms and history, comorbidities, overall physical and mental health, anything that is known to exacerbate or alleviate symptoms, and sleep quality)

  • physical functioning

  • the impact of symptoms on psychological, emotional and social wellbeing

  • current and past experiences of medicines (including tolerance and sensitivities), vitamins and mineral supplements

  • dietary assessment (including weight history before and after their diagnosis of ME/CFS, use of restrictive and alternative diets, and access to shopping and cooking).
1.5.2
Develop and agree a personalised care and support plan with the person with ME/CFS and their family or carers (as appropriate) informed by their holistic assessment. Include the following, depending on the person's needs:

1.5.3
Recognise that the person with ME/CFS is in charge of the aims of their care and support plan.

1.5.4
Give the person and their family or carers (as appropriate) a copy of their care and support plan and share a copy with their GP.
 
My interpretation of that is a one page document that lists the current situation and needs and actions to be taken by clinician and patient, for example for a hypothetical patient called Fred:

Name Fred...
Assigned clinician coordinator Clinician X (eg specialist nurse)

information and support needs
Fred needs medical information to be provided in writing as he finds it difficult to concentrate and remember outcomes of consultations.
Fred needs medical care to be provided accessibly, wherever possible with home visits, or where suitable, by phone or email.
Action Clinician X to alert GP practice

support for activities of daily living
Fred lives alone. He is currently provided with a carer with half an hour on alternate weekdays paid for by social services to help with household tasks, preparing meals and showering. This is not sufficient. He needs daily help of at least an hour.
Action: Clinician X to contact social services alerting them to Fred's increased needs and asking for him to be reassessed.

mobility and daily living aids and adaptations to increase or maintain independence
Fred's home is unsuitable, with no grab rails and narrow doorways, making it difficult for him to use his manual wheelchair which he needs to use on bad days.
Action: Clincian X to contact the local authority OT service to arrange a home adaptations assessment.

education, training or employment support needs
Fred has been unable to work because of his severe ME/CFS for five years. He needs help with reapplying for benefits likely to be required within the next year.
Action: Clinician X to arrange provision of medical and care reports and assistance with filling in benefits applications when needed. Draft reports to be prepared in advance.
Fred to alert Clinician X as soon as DWP contacts him.

self-management strategies, including energy management
Fred needs to pace his activity. He is struggling with this as he needs to do some hobbies to occupy himself and finds them tiring as they require him to sit up and use his arms and hands, and coping on his own with household and personal care takes him beyond his energy envelope leading to frequent crashes. He finds having to explain his needs to ever changing carers exhausting. He needs more, and more consistent, care from people who understand his sensory and exertion limitations.

Action: 1. Clinician X to contact the care agency and provide them with information about the needs of people with ME/CFS, including Fred's specific needs.
2. Clinician X to provide Fred with a heart and step monitor and leaflets explaining their use to help him with pacing physical activities. Clinician X to check how this is going in 3 months time by email.
3. Fred to investigate more activities, eg non stressful games he can do online on his phone to use when lying down, and audiobooks and podcasts, and try to cut back and pace his sitting up hobbies, breaking into shorter sessions.

physical functioning and mobility
Fred needs a motorised wheelchair, as he finds the manual one exhausting. He needs to be accompanied by a carer when he needs to go to appointments that can't be done at home such as dentist.
Action report this need when making OT assessment appointment.

managing ME/CFS and symptom management, including medicines management
Fred is on a 20mg Amitryptiline nightly to help with sleep. He takes self prescribed paracetamol and ibuprofen for his muscle pain and headaches. He wants these reassessed as they are not very effective. He is concerned about recent minor weight loss due to nausea and unappetising processed food, and needs a dietician assessment and advice on ways to eat more healthily on his tight budget when he can't prepare meals.
Action Clinician X to arrange GP home visit to review medications.
Clinician X to arrange dietitian home visit

Guidance on managing flare-ups and relapses
Living alone makes coping with flare ups difficult as he cannot always get out of bed to fetch food or use the bathroom.
Action Clinician X to alert OT assessors and social services assessors of this problem.

details of the health and social care professionals involved in the person's care, and who to contact
Coordinator Clinician X, phone number..... Email address...
GP name, phone, email
Social services name, phone, email
Care Agency name, phone, email
Emergencies NHS 111 for out of hours advice, 999 for medical emergencies.
To be added:
Dietician
OT
 
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Sly Saint said:
the use of the term 'boom-and-bust' is for me an automatic red flag as to where the information is coming from.
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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.
 
Trish said:
My interpretation of that is a one page document that lists the current situation and needs and actions to be taken by clinician and patient, for example for a hypothetical patient called Fred:

Name Fred...
Assigned clinician coordinator Clinician X (eg specialist nurse)

information and support needs
Fred needs medical information to be provided in writing as he finds it difficult to concentrate and remember outcomes of consultations.
Fred needs medical care to be provided accessibly, wherever possible with home visits, or where suitable, by phone or email.
Action Clinician X to alert GP practice

support for activities of daily living
Fred lives alone. He is currently provided with a carer with half an hour on alternate weekdays paid for by social services to help with household tasks, preparing meals and showering. This is not sufficient. He needs daily help of at least an hour.
Action: Clinician X to contact social services alerting them to Fred's increased needs and asking for him to be reassessed.

mobility and daily living aids and adaptations to increase or maintain independence
Fred's home is unsuitable, with no grab rails and narrow doorways, making it difficult for him to use his manual wheelchair which he needs to use on bad days.
Action: Clincian X to contact the local authority OT service to arrange a home adaptations assessment.

education, training or employment support needs
Fred has been unable to work because of his severe ME/CFS for five years. He needs help with reapplying for benefits likely to be required within the next year.
Action: Clinician X to arrange provision of medical and care reports and assistance with filling in benefits applications when needed. Draft reports to be prepared in advance.
Fred to alert Clinician X as soon as DWP contacts him.

self-management strategies, including energy management
Fred needs to pace his activity. He is struggling with this as he needs to do some hobbies to occupy himself and finds them tiring as they require him to sit up and use his arms and hands, and coping on his own with household and personal care takes him beyond his energy envelope leading to frequent crashes. He finds having to explain his needs to ever changing carers exhausting. He needs more, and more consistent, care from people who understand his sensory and exertion limitations.

Action: 1. Clinician X to contact the care agency and provide them with information about the needs of people with ME/CFS, including Fred's specific needs.
2. Clinician X to provide Fred with a heart and step monitor and leaflets explaining their use to help him with pacing physical activities. Clinician X to check how this is going in 3 months time by email.
3. Fred to investigate more activities, eg non stressful games he can do online on his phone to use when lying down, and audiobooks and podcasts, and try to cut back and pace his sitting up hobbies, breaking into shorter sessions.

physical functioning and mobility
Fred needs a motorised wheelchair, as he finds the manual one exhausting. He needs to be accompanied by a carer when he needs to go to appointments that can't be done at home such as dentist.
Action report this need when making OT assessment appointment.

managing ME/CFS and symptom management, including medicines management
Fred is on a 20mg Amitryptiline nightly to help with sleep. He takes self prescribed paracetamol and ibuprofen for his muscle pain and headaches. He wants these reassessed as they are not very effective. He is concerned about recent minor weight loss due to nausea and unappetising processed food, and needs a dietician assessment and advice on ways to eat more healthily on his tight budget when he can't prepare meals.
Action Clinician X to arrange GP home visit to review medications.
Clinician X to arrange dietitian home visit

Guidance on managing flare-ups and relapses
Living alone makes coping with flare ups difficult as he cannot always get out of bed to fetch food or use the bathroom.
Action Clinician X to alert OT assessors and social services assessors of this problem.

details of the health and social care professionals involved in the person's care, and who to contact
Coordinator Clinician X, phone number..... Email address...
GP name, phone, email
Social services name, phone, email
Care Agency name, phone, email
Emergencies NHS 111 for out of hours advice, 999 for medical emergencies.
To be added:
Dietician
OT
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Yes @Trish spot on
 
Trish said:
My interpretation of that is a one page document that lists the current situation and needs and actions to be taken by clinician and patient, for example for a hypothetical patient called Fred:

Name Fred...
Assigned clinician coordinator Clinician X (eg specialist nurse)

information and support needs
Fred needs medical information to be provided in writing as he finds it difficult to concentrate and remember outcomes of consultations.
Fred needs medical care to be provided accessibly, wherever possible with home visits, or where suitable, by phone or email.
Action Clinician X to alert GP practice

support for activities of daily living
Fred lives alone. He is currently provided with a carer with half an hour on alternate weekdays paid for by social services to help with household tasks, preparing meals and showering. This is not sufficient. He needs daily help of at least an hour.
Action: Clinician X to contact social services alerting them to Fred's increased needs and asking for him to be reassessed.

mobility and daily living aids and adaptations to increase or maintain independence
Fred's home is unsuitable, with no grab rails and narrow doorways, making it difficult for him to use his manual wheelchair which he needs to use on bad days.
Action: Clincian X to contact the local authority OT service to arrange a home adaptations assessment.

education, training or employment support needs
Fred has been unable to work because of his severe ME/CFS for five years. He needs help with reapplying for benefits likely to be required within the next year.
Action: Clinician X to arrange provision of medical and care reports and assistance with filling in benefits applications when needed. Draft reports to be prepared in advance.
Fred to alert Clinician X as soon as DWP contacts him.

self-management strategies, including energy management
Fred needs to pace his activity. He is struggling with this as he needs to do some hobbies to occupy himself and finds them tiring as they require him to sit up and use his arms and hands, and coping on his own with household and personal care takes him beyond his energy envelope leading to frequent crashes. He finds having to explain his needs to ever changing carers exhausting. He needs more, and more consistent, care from people who understand his sensory and exertion limitations.

Action: 1. Clinician X to contact the care agency and provide them with information about the needs of people with ME/CFS, including Fred's specific needs.
2. Clinician X to provide Fred with a heart and step monitor and leaflets explaining their use to help him with pacing physical activities. Clinician X to check how this is going in 3 months time by email.
3. Fred to investigate more activities, eg non stressful games he can do online on his phone to use when lying down, and audiobooks and podcasts, and try to cut back and pace his sitting up hobbies, breaking into shorter sessions.

physical functioning and mobility
Fred needs a motorised wheelchair, as he finds the manual one exhausting. He needs to be accompanied by a carer when he needs to go to appointments that can't be done at home such as dentist.
Action report this need when making OT assessment appointment.

managing ME/CFS and symptom management, including medicines management
Fred is on a 20mg Amitryptiline nightly to help with sleep. He takes self prescribed paracetamol and ibuprofen for his muscle pain and headaches. He wants these reassessed as they are not very effective. He is concerned about recent minor weight loss due to nausea and unappetising processed food, and needs a dietician assessment and advice on ways to eat more healthily on his tight budget when he can't prepare meals.
Action Clinician X to arrange GP home visit to review medications.
Clinician X to arrange dietitian home visit

Guidance on managing flare-ups and relapses
Living alone makes coping with flare ups difficult as he cannot always get out of bed to fetch food or use the bathroom.
Action Clinician X to alert OT assessors and social services assessors of this problem.

details of the health and social care professionals involved in the person's care, and who to contact
Coordinator Clinician X, phone number..... Email address...
GP name, phone, email
Social services name, phone, email
Care Agency name, phone, email
Emergencies NHS 111 for out of hours advice, 999 for medical emergencies.
To be added:
Dietician
OT
Click to expand...

This is far better you should stick that in a word temple and publish it..
 
Typos - e.g. two in the first paragraph of the Introduction

This idea that a patient writes a "care plan", and then finds a health professional to sign off on it - it's nonsense. The process of trying to get a health professional to sign a wishlist written by the patient is likely to be upsetting for the patient and annoying for the health professional.

My employment status
The list of options includes 'I am undertaking a phased return to employment' twice, which seems like a Freudian slip.

"These complex systems operate at a deep level inside us." - Others have already commented - but, seriously? It's laughable.

As others have said, this document is not a care and support plan. See for example Section 5 on education. You have to give reasons for any limitations in participating in education; what your coping strategies are; and what additional support you believe is required. A status report written by the patient is not a plan. A personal wishlist written by someone not in a position to make things happen is not a plan. For a health care plan to work, one or more health care professionals have to be on board, and there have to be concrete targets e.g. 'GP to contact school to support provision of education at home for the remainder of the school year'. Trish's example plan is a plan, a useful plan.

Section 6: How my employment activities are limited by my health
The first two headings are
'I am employed/self-employed as:'
'I work full-time/part-time'
There is nowhere for the fact that someone is not working to be acknowledged and for the type of target that Trish included about Fred to be written. For a person newly diagnosed with ME/CFS, there is nowhere for a health professional to note that they will write a letter to the person's employer with content that has been agreed with the patient.

Section 7: Managing my combined activities and baselines
I agree with others that the 'boom and bust' term (and the implicit blame that goes with it) should not appear in ME/CFS advice. The 'Basic Weekday/Weekend Activity Sheets' have no place in a Care and Support Plan. The following is theoretical life-sapping nonsense:
One way of avoiding the boom-and-bust pattern of activity is to establish a baseline. A baseline is the level of a particular activity that I can usually manage consistently, without triggering PEM. Baselines are unique to each individual and vary greatly depending on the severity of the M.E. and other health conditions.

Baselines can be measured using the amount that someone does of a certain activity (e.g. reading a page), the length of time they do a certain activity for (e.g. reading for two minutes), and sometimes the distance travelled doing a certain activity (e.g. walking 10 metres). Baselines change over time and for some people – but not everyone – they can be slowly increased by consistently undertaking an activity. Baselines will also need to be adjusted during a setback in the M.E.
Click to expand...
Do they really expect someone to note that they read for two minutes in a day and then slowly increase that, noting each day how long they read for? As others have said, this is coming from a deep patronising belief that if only we could get over ourselves and try harder, even just a tiny bit harder, we would find that we can do more than we think and could get on the path to recovery.

I'm surprised at AfME for promoting this sort of document, and for thinking that it is a Care and Support Plan template. I wonder if AfME funds were used to pay anyone for its development?

I can see that there is a need for a Care and Support Plan template to make the provision of good care easier for GPs and specialist clinic staff, with different versions for people of varying severity and prompts for content
e.g. For people who are essentially bed bound:
- consider vitamin D status and approaches for the person to spend some time outside in the sun
- consider in-home physio visit to advise on in-bed exercises to prevent range of motion loss
- consider nutrition adequacy, monitor weight; consider dietician visit
- consider carer well-being and respite care
- prepare a note on required accommodations in case of hospital admission
....

But, this document is not that.
 
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