The Agreed Care/Activity Plan

Reading through various documents, including the nice 2021 Guideline and the 2024 BACME resource for severe ME/CFS I continue to trip over the term 'Agreed Care Plan'

What exactly does the word 'agreed' mean here?

If the person is being provided with some form of treatment such as a drug or a massage or even a bath rail then it makes sense for health care professionals to ensure that the person agrees to the provision.

But if the care plan, or activity plan, or even support plan, consists of the person doing more or less activity, why do they need to agree to this in advance?

The BACME document says something about people having the right to no longer agree or to then re-agree, but why would it matter anyway?

The answer seems to be that the health care professionals are entitled to expect patients to 'play their part' in a process. But why? Presumably so that they can document that either the patient followed the plan or not. And the only reason for that I can think of is that this would be relevant to any appraisal of the health care professionals' success. If the patient co-operates the success is down to the treatment. If they do not then no responsibility is taken for lack of success.

Or am I being too critical?

Since nobody knows whether or not care plans actually help I continue to fail to see why a person should need to agree to following one?

 

There was a general sense with the NICE Guideline that the de-recommendation of GET and CBT was the crucial step forward but that there was still a bit of wiggle room for pacing-up or GET-lite 'activity plans'. I can see the justification for including some suggestions about supporting people in regulating their activity. So activity plans made some sort of sense.

But it is the 'agreed activity plan' that seems to carry an implicit element of 'doing what you're told'.

 

But that isn't logic to me.
You need to find a diet that suits the patient. If they the do not follow it then it is a pity but it was still worth giving the advice because they might have followed it. You wouldn't say ' well, I'm not going to bother to tell you what to eat because you won't anyway'. Or, you might if it was absolutely clear that they would not agree, but it is the idea that you need to write down some 'agreed' plan that I don't get. You can write down the plan, in case next time the patient has forgotten and you don't want to waste time going through the choices with them again, but an 'agreed plan' seems to imply something other. I am pretty sure it is all about being able to tick the person off for not doing what they are told.

For diets the ida of some specified plan makes a bit more sense because we know they work if stuck to. For activity plans in ME/CFS we don't. But I still think the 'agreed' word has no place in any of this.

 

Yes, although in that regard it is interesting to note that BACME says that you can opt out of the agreement and opt in again at any time - implying without penalty.

 

An average MECFS patient knows a lot more about MECFS than any doctor. I don't understand why any patient would seek an agreement with the care givers. Then again, I never understood why any patient would even bother with medical care. It was clear to me from the get-go that there was nothing the medical professionals could do for me, and I never sought care after a half dozen doctors just to exclude other conditions. Maybe it's the product of different medical system? I'm glad we don't have these "agreed care" or "guideline" that we have to fight on this side of the pond.

 

in theory

 

I'm an incurable optimist, so I take the word to mean agreed by the provider. They are the ones giving the care, and it should work as a broad statement of current needs.

On the patient's side, if they think it's inadequate or wrong they could ask for alternatives to be agreed/added (although they may not get them).

But if they aren't receiving what has been agreed, the plan should give them a level of backup. It would theoretically be useful if the person needed to interact with another clinic/centre/hospital...though in a massively overstretched service, it might not have much impact.

 

But do you think that actually means anything?
It sounds to me like the doublespeak we hear all the time.
It sounds as if it is all for the benefit of the patient but it is actually for the benefit of the professional.

Healthcare is not a collaboration. It is providing a service.
The patient's consent to being provided with a service should not be confused with their 'agreement' to do what they are told.

I find it hard to work out what 'ownership' has to do with it. If the patient wants it maybe that's ownership but what if they don't want it after all?

The whole business of 'collaboration' sounds phoney to me as a one time provider of a service.

 

That is rather what David Tuller and I concluded. In the USA this sort of phoney 'agreeing' doesn't work because people aren't prepared to be manipulated in the same way and can look elsewhere.

 

But why does the provider need to agree?
If I saw a patient and recommended a more powerful drug and they said no thanks I wouldn't need to agree or disagree. If they opted for my suggestion then it wouldn't make sense for me to 'agree' to that.

 

Indeed.
But the bits about agreed plans seem to be specifically about what has been agreed that the patient will do in the way of activity.

 

Like many, I'm intrigued what the elusive NICE driven care plan is, whether agreed or otherwise.

I've been referred to a 'CFS' clinic in London (UCLH) where the form my GP had to complete, for the referral, was very NICE '21 terminology-aligned, mentioned that they can offer a care plan, so, despite not expecting anything from them, given I've got all the diagnoses I am likely to get already, I'm going to be pushing to better understand what the care plan is.

Given how oversubscribed these NHS services are, I fear that not necessarily through any malice (but, who knows?), the risk is that a number of recommendations are made and if the patient doesn't agree with, or, go along with them or make notable progress, this can/will be used against them - with discharge from the service, noted on your medical records etc.

We'll see. My BS-ometer is going to be on high alert whatever happens. I'm also in the position where insurance is a factor, so, any suggestion of non-compliance is a massive risk for me.