The Agreed Care/Activity Plan

You’ll need to opt out because their “treatment” will make you unwell, but they’ll let you come back and try again.

we saw some similar language in the WRAP guidance for mental health patients, which BACME referred to in their guidance.

 

https://www.s4me.info/threads/do-you-have-a-uk-nice-care-plan.37014/#post-512796

I asked the question about whether people have the NICE care plan. UCLH was mentioned as looking to use them.
I’ve been filling my own in using the template (see thread for link) I doubt I’ll ever meet a HCP willing to do it

 

I viewed it from a needs point of view, which is how it was presented to me when a care plan was proffered. Mine was completely blank apart from my name and address, but I suppose it's the thought that counts.

I wanted to add that I'm a wheelchair user, and need an autism-friendly environment (as if!) and time to process questions. One of the things I pointed out is that I often only grasp what was really being asked after an appointment, so one of my needs is for a straightforward way to add a brief clarification. Autism has far more of an effect on my ability to deal with routine medical care than ME, so that's what I wanted to focus on.

The idea was that this stays on record in addition to the notes made by all clinicians as a matter of course, and is available to others treating me. The agreement bit was the fact that the doctor accepted and endorsed this, and I was to countersign it to agree it was suitable for me.

I've never been referred to an ME clinic, though (my GP advised against), so that might be a whole other reality...

 

Is it a signed document ?

 

I can't see it another way than that this is the same framing as in most psychotherapy, or addiction treatment, where this is explicitly demanded of patients that they actively engage in their therapeutic process.

Which is consistent with the general idea that they may pretend that a biological or physical thing triggered it, but the maintenance is psychological. The closest IMO is really with addiction therapy.

So it really makes no sense, it just shows they don't understand the problem and would rather obsessively focus on questions that they mistakenly think have to do with the problem.

I'm sure we'll see in the next few years some movement away from calling it psychological and preferring behavioral. Which is the same thing, but change in behavior requires the same commitment. This is just the same old cycle of changing a few terms and labels to pretend a change in, ironically, beliefs and behaviors on their part, while they stick to the same old Freudian nonsense in all but name.

 

That framing has long been around, the idea that patients can choose to re-engage with the treatments later on, if they finally find the motivation for it. Yes, you've tried CBT and GET, but you can always try them again. And again. It works, if you have the motivation, has always been the core of it.

 

Only scanned a few posts.
Firstly, as per comments above, there's no evidence this works i.e. "The Agreed Care/Activity Plan" --- whatever the "activity plan" means!
Secondly, it's not objectively monitored --- so there's no way to objectively assess whether it's +ve/-ve ---?
If this is to be an accepted strategy then I'd suggest that they start monitoring people --- e.g. using the sort of smart phone technology that measures time upright. Then review and say OK you tried to do X this week & you fell in a heap and couldn't even manage the bare minimum you currently do - not really what we are aiming for.

I think the NHS commissioning body (it's paid for out of tax) should try to monitor what's going on here and whether it's worth funding. OK that brings us back to ME Association "(clinical) toolkit" - for the avoidance of doubt I'm not referring to those who commissioned it!
The fatigue Aberdeen University fatigue study might actually be a useful starting point.

All in all this sounds pretty shoddy & likely the beneficiaries are those getting paid to "agree activity plan" - not the recipient!

 

All of this is really disturbing to me. I have inadvertently seen it creep in, in layman's terms in language used in other areas albeit the individual isn't probably aware where it is coming from or the power of it. But it means I have to rise above, or try, even though it gives me the shivers. I don't know why it has come in so much and whether it is something to do with cover backs or show that it has been discussed or just a turn of phrase.

I think it is correct to pick this up now considering it feels like there is a manipulation from the intended context back to those with behavioural mindset, which makes it an utterly different thing.

There is a big difference between patient-led care plan which I have heard used and emphasises that the patient notes what they need and adjustments to be made.

and something that is using terms that do come from behavioural management of the patient. And that is where its origins lie. And relate to imposition of a coercive contract onto an individual. The impact of which should never be belittled. Imagine living under that even if it was something that made sense.

And yes people will have such things in workplaces too. But the focus on the 'behavioural' of the individual makes it then very one-sided. If someone works over or under their alotted hours it becomes owned by them rather than a description of what happened that required that if worded as such.

When it doesn't 'make sense' (as a paradigm or treatment approach - and I'm unsure these days there is anything that justifies it, no condition at all) I would almost go as far it removes people's human rights where what is in there requires things that turn out to be detrimental to their health so both 'choices' lead to being forced to wreck your own health until you can't any more then it is imposed? It acts like a reign of terror over an individual and tells them and anyone who reads it that they are undeserving, someone whose behaviour is to be monitored. And accusations made if their health dips.

 

Good behaviour contract?
I agree it’s mental health/addiction type language, or management speak for an appraisal, personal development plan or performance improvement…

 

It is very naughty too if they are actually using care / activity

For ME/CFS those are polar opposites.

The care plan that @Kitty describes is noting adjustments that people who are there to provide support need to make and be aware of.

The idea that people need an activity plan, and that it can then be hidden as an alternative to a care plan - which puts the impetus on the 'helper' or staff member. Well I think that is insightful of why these individuals are a problem. It doesn't matter if it is inadvertent it seems a switch and bait.

 

I hope to think that the “Pandora’s box” is open now - wearables are advanced enough to give detailed information as to whether you are “overdoing it” or not.
This puts the patient in charge, and the results will show “incremental activity increases” or as it used to be called“GET” doesn’t work - right there on the screen.

 

Add in the additional problem that we've now all realised those of us who gave something a go as guinea pigs at least thought that what the outcome for us as individuals was would be written down accurately. Imagine how devastating it is to realise (probably due to coercion or fear in the system, but maybe what they thought of us) that was twisted. Or to feel that you'd got walked into saying something to please someone under coercion or exhaustion and knew that would impact your future wellbeing.

Which when it is combined with an intention from the same individuals who did that epistemic injustice to convert to using PROMS that are only subjective - when we know that subjective will be coerced by the situation or attacked and never be used as evidence if it disproves something..

Well it feels like all that will be being kept of those is the phrase 'agreed'. So the 'nod and leave' to survive another day ends up having huge long-term (legal? or worse?) consequences?

I don't care what the excuses are it is insensitive given these are exactly the same individuals so pretending there is no history or saying catastrophisation is just another symptom of the same harmful attitude. Empathy isn't a niceness or whatever they want to pretend to misunderstand it as something else, it isn't 'sympathy' or compassion or consideration. It is insight into the situation that should be compulsory to be able to work in most jobs. It is akin to theory of mind and acknowledgement that if you place that person in the road and tell them not to move with a threat for doing so, that you are simply able to see that when a lorry comes along you've created 'a situation' that you can see - and not someone who pretends they can't see that [situation] and all the limited options and rebounds but only says 'they seem emotional' .

 

Without the correct methodology then no.

The issue for ME / CFS being as vulnerable as it is has always been due to the fact that we can 'do' but then it causes deterioration. But in a very different way to those who are ill with certain illness who talk about 'I'll pay for that later'.

The behavioural ideology isn't really some professional thing these professionals like to pretend it is, it's just an attitude of dismissal. All my symptoms were basically just termed by everyone else as bad behaviour. And if they shouted at me enough when I was collapsed I eventually had to move to try and make myself safer. So they'd been proven right. That's - to be frank - who these people are and how they think. They believe they are merciful because of their 'gentle care' when they treat us.


So as our activity gets lower then rather than that (if doing proper controlled experiments looking at how we operated above threshold for the prior 6months) being seen as us being more ill, it then gets cart-before-horsed.

It's so bonkers this mindset that I had a perfectly good shoulder, something happened to it (ie a specific event that obviously caused it), and then it was stuck at 10% in agony - a frozen shoulder, from a previously fine one. The number of people who tried to suggest to me it was 'maybe because I hadn't been moving it enough'.

Literal fingers in their ears and walking off after they'd been able to get that barb in

Edit: truth is most of their behavioural doesn’t work it just feigns it by coercing the person stuck under it that the only way they can escape or get whatever essential to life thing signed off it to ‘be seen to meet their goal’ which just do funnily enough happens to be what their pay or career gets based on. There is no ‘treatment’ of the underlying thing just using those who have anything at all left to escape to produce an ‘effect’ causing them long term psych and physical harm and the poor so and so’s who weren’t well enough gets that ‘fake effect’ hung over their head. It’s behavioural psych in the most pure and gross sense that’s actually in operation.

 

Nailed it @Jonathan Edwards .

It looks and sounds to me like it's an encroachment into the NHS requirement to provide a care plan for a patient with any chronic illness or condition has and for that patient to have a copy of it, as was also a requirement in the 2007 Guideline, I believe if memory serves, of ACT Acceptance And Commitment Therapy (ACT) (simplypsychology.org).

It's just a patient care plan. The consents to the treatment suggested in it or not.

What's happening here is:

Acceptance (Agreed) Care Plan (activity = pain meds and a 10 min walk down the road without noticing your pain, fatigue etc) or put it another way, CBT.

In other words, they're bringing therapy into the actual process of writing a care plan to which the patient consents or not and calling it collaboration. I recognise the style. I mean, that's all kinds of wrong!

So if my GP were to try to persuade me to go on Statins again as part of a care plan for me with severe ME as I am unable to move around much and with Secondary Polycythaemia - high risk of stroke etc, he would not be following the care plan. That's because I've already said nope, quality of life 'n' all. I had severe response to side effects on day 2 of taking statins previously. My legs swelled up to the point I couldn't bend them to even get up. Then those meds or any other similar, are scratched from the care plan due to my sensitivity to that medication as per symptom in NICE guideline.

Hands up anyone who's ever had a care plan. 12 years in and I'm still waiting for one.

 

Exactly @NelliePledge I have a social care, care plan that does that. But what you are agreeing with the GP is also a treatment plan. Imagine they're treating us with a blood therapy and while the drip is in our arm and the plasma is flowing they're sat in front of you negotiating your acceptance for that activity. Total BS.

 

Evidence of ACT in use : Qualitative study of the acceptability and feasibility of acceptance and commitment therapy for adolescents with chronic fatigue syndrome (bmj.com)

 

Thank you for raising this. Clarity is required in order that what might have been the correct intention isn't distorted into something quite different.

Particularly when it is being done by a service itself (rather than eg GP signing off needs/adjustments for other provider to provide) and they only offer one thing there is nothing genuine about this.

At best they are doing it due to being a third party and wanting payment I suspect. That is the only slightly unsinister (at its root) source behind it. But even then.. my example in my head was a prescription thing where repeat prescriptions got changed to each month patient having to 'ask for their repeat' via GP and chemist basically said it was because they thought chemists were making money off patients not having to ask each month to say they wanted x, y, z (when chemist ordered full repeat for them, even though they had to sign the form). So this would be some third party service getting you to sign so they can claim you asked for said service (in case lots in the past maybe got sent on a course and only did one session because it was rubbish but they still got paid)?

If it were medical and about informed consent with choices of different options with different risks/benefit for the patient to decide on then the language would also be different.

Even if someone was as a patient insistent on trying exercise and 'pacing up' then it should be symptom contingent (not 'agreement') and e.g. a gym would have them doing the above informed consent/aware of risks to cover liability?

The fact I have only got through two examples and used the term informed consent twice reminds me that this behavioural area has a major issue with informed consent / consent at all due to it believing in things like placebo anyway (which is the definition of breaching consent and believing it to be justified).

If there were some compromise needed because the patient's needs were eg 4hrs of a cleaner each week but they couldn't offer it but something else was in its place then you'd expect such differences /best fits to be annotated as such. Would that even require a term 'agreed'? certainly in the way suggested.

I can't tell you how much all of this sort of thing makes me feel given I've come across enough of these individuals who would certainly be problematic with any lee-way given.