The Agreed Care/Activity Plan

[bobbler]

Here is the other thing along the lines of agreement and informed consent. CBT was supposed to be an add-on (that wasn't needed to be in the guidelines, just like all other illnesses would have that option) for if comorbidities were present.

Yet it, and underlying beliefs about things like GET got 'embedded' into these individual's literature and thereby communication techniques used with people. To me that is imposing something without consent too, even though they mightn't acknowledge or even realise do to that approach being all they do (and using it with other patients if any of them even work with any other patient groups than ME).

THe spirit (ie like spirit vs letter of the law) of the guideline also emphasised that the whole thing should absolutely not be based on false beliefs or deconditioning. I doubt there is any other illness where that has to be underlined due to the habitual wheedling of certain areas. And yet they've wheedled on it.

So as far as agreement and informed consent or choice on that it isn't even considered. Only on the patient 'doing'?

If getting one bit of some help (like a letter confirming to employers in order that you keep your job) is contingent on stuff that isn't really acceptable but no other choices are allowed to enter the market (I think its time we have Bateman Horne and others coming in as alternatives training up new centres) that's actually coercion and not 'agreement' whatever someone is requiring as a signature on a form.

There is no indication that is someone suggesting they want to do x amount of activity and the provider signing it off, and for all we know they are doing the classic 'well you can always do more'.

Is this from BACME?

 

[Samuel]

cannot read thread so deletable if redundant.

sounds like adhesion contract. would be good if charities helped pwme [incl me] fight back using law.

agree as orwellian synonym of coercion is rife in us.

 

[Hutan]

By coincidence, I've spent bits of the last few days, with the help of others, putting together a response to the latest Healthify patient guidance on ME/CFS. Here's the Healthify page - national health guidance for the public:
https://healthify.nz/health-a-z/m/mecfs/
The page is better than it used to be, but still has a long way to go.

Here's a copy of the whole Treatment section:

As there is no treatment that can cure ME/CFS the condition is 'treated' by treating or managing the symptoms experienced.

Management plan
A management plan for ME/CFS aims to relieve your symptoms to improve your quality of life. The plan could include:

• how to manage stress
• a very gentle exercise plan personally designed to help you maintain muscle strength but not bring on a worsening of symptoms (known as post-exertional malaise or PEM)
• a nutritious diet, with regular meals/snacks to keep up your energy
• supplements, if your diet lacks a good balance or if your blood tests indicate deficiencies
• a sleep management plan, which may include medicine
• physiotherapy to help with pain and good breathing techniques
• medicine for pain
• psychological input if you are particularly stressed or depressed. Counselling, psychotherapy, cognitive behavioural therapy and group therapy can all be helpful.

Note: the use of some treatment approaches is controversial, and experts differ in their opinions about what works and doesn’t.

Complementary and alternative medicines and therapies are often tried for ME/CFS. It’s a good idea to talk through your plans with your healthcare provider.

The important thing is that you build a good relationship with a healthcare provider you trust, and work out a plan together that suits you and your circumstances.


Medicines
There are medicines that may be used to relieve some of the symptoms.

Over-the-counter painkillers occasionally can help ease headaches as well as muscle and joint pain. Your healthcare provider may prescribe stronger painkillers, although they should only be used on a short-term basis. You may be referred to a pain management clinic if you have long-term pain or fibromyalgia, which can look a lot like ME/CFS.

People with ME/CFS usually have poor sleep, and medicine may improve your sleep quality and give you a better chance of recovery.

Antidepressants can be important for people with ME/CFS who are experiencing depression or anxiety as a result of living with the condition. Talk to your healthcare provider about whether these might be useful for you.

You can see that a 'Management plan' is the core thing that the health care provider is supposed to be producing in order to 'treat' the person with ME/CFS.

One point I made about this was questioning whether anyone had actually asked health care providers such as GPs if they want to produce a management plan for an ME/CFS patient and would have any idea what to usefully put in it. If they don't have the time or expertise or desire to put one together, then creating an expectation in the patient that there will be a written and useful management plan will only end in disappointment.

Another point was that, given there is no treatment, a health care provider trying to fill up a management plan is probably going to be tempted to just make stuff up, to ensure that there is something there. So, along with possibly useful things like writing a letter to the school, writing a referral to a service that supports children who can't attend school due to health problems, or helping the person apply for disabled parking rights, there is likely to be a whole lot of mindfulness, sleep hygiene and education on good breathing techniques going on.

While directing people newly diagnosed with ME/CFS to generic resources on healthy living with a chronic illness can be good and asking people about behaviours that might be causing fatigue is fine, providing people with a management plan that instructs them on eating well and sleeping well is presumptive and patronising. I had quite a bit more to say about the detail of the management plan as proposed there.

Anyway, I agree that there are a lot of issues around guidance promoting plans of various sorts for people with ME/CFS. In the hands of an informed and humble health care team with sufficient time, plans could be useful to keep track of things that can be done, to work through things in a systematic way. But, when it comes to ME/CFS, there aren't many health care teams like that, and so plans are a lot more likely to cause harm.

 

[Sean]

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?

No. You are completely correct. It is very much in the spirit of a contract, with all the notions of obligations and penalties that attach to it. Very manipulative.

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.

Yes, how can they offer something when there is nothing (specific to ME/CFS) to offer that has been demonstrated to work (and be safe)? All they have is generic standard medical care that all patients should get, which is fine as far as it goes, but hardly worth a specific 'care plan'.

I can see that it makes sense to put in writing for both patient and clinic any advice leaflets etc that has been given, medications prescribed, and any plans for things like frequency of follow up and contact details of relevant clinicians. Written advice on pacing and use, for example, of wearables, and management of OI etc, are best given as leaflets the patient can take home rather than wasting time writing it out in individual care plans.

I think part of the care plan thing for rehab clinics is probably to demonstrate that 'individualised' advice has been given, and to make the therapist feel they have done specialist work and the patient think they have been given personalised treatment. But for ME/CFS, therapists will have no idea what will be helpful for individuals other than general pacing advice that can come from a leaflet.

That is all that is required and justified, at this point. Anything more is just performative job-saving nonsense.

They still can't face the fact that after decades of dominance they have nothing.

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 ---?

+1

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.

Correct. They are just trying to hang onto their empire. This benefits us not at all.

 

[Alis]

I am not able to read many of the posts.
I had a care plan last year. I am severe / very severe. It was because of malnutrition.
In my experience it wont work unless all the people involved have , or the majority at least , a very good understanding and acceptance of the complexities / issues to do with very severe me.
I had involvement / input [ visits ] from Drs , community nurses and district nurses , social workers , dietitians , carers and a few others Too much.
It was a bit of a nightmare.so very difficult .frustrating. very very exhausting ,debilitating etc
it didnt start off well as the initial assessment was done by a community nurse and lasted about 1 - 2 hours.
And I cant remember agreeing to some things but that was because I wasn't able to take in what was being said after a while
and I wasn' t able to hear [not explaining things well - I don't mean with my ears - I think it was all too much and my brain started to shut down completely.]
One example of all the problems I had was an insistence that either the main bright light in my room was put on or the curtains drawn back. even though I had explained [ or tried to ] about my light sensitivity. and also often information wasn't passed on to all the people involved.

 

[MrMagoo]

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.

What I meant was, as a patient I can prove that GET isn’t helping me.
Back in my day, we barely had the internet, so being sat in a CBT session and told to keep increasing activity sounded like BS, felt like pain and so what could I do?
Now, we have the wearables to do the monitoring, which also gives people the power to say “look, your advice isn’t working” and also then talk about it in online groups.

The “old guard” can flog their dead horse as much as they want, the tide has turned.

I do think also that language is so important, I’m a big fan of semantics and we should be monitoring this sort of thing.

It would be interesting to know how many people have a BACME care plan “agreed” I suspect not many, as like the NICE plan it’s a bit too much like hard work.

 

[Trish]

I think @Alis makes very good points. In very severe cases where medical care is needed, a care plan should be about the specific care needs of the patient, such as short visits, low light and sound, assistance with eating, not too many different people to deal with, following NICE guidelines for severe ME/CFS etc.

 

[Jonathan Edwards]

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.

Yes, I fully see the sense of an agreed care plan if it is something yo are being provided with - wheelchairs, suitable environments etc.

My puzzlement is at an 'agreed care plan' that simply consists of the patient agreeing to get up and walk about a bit more and then a bit more and...

 

[Jonathan Edwards]

but I noticed you used the word coercion

That word had already been in the document I am writing. It was reading through NICE NG206 and the BACME resource that made me think 'agreed' was where it was hidden in plain sight.

 

[Jonathan Edwards]

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.

And so that is where the missing CBT went!

 

[Jonathan Edwards]

I think @Alis makes very good points. In very severe cases where medical care is needed, a care plan should be about the specific care needs of the patient, such as short visits, low light and sound, assistance with eating, not too many different people to deal with, following NICE guidelines for severe ME/CFS etc.

Agreed. Alis's illustration is very useful. It makes a different point from the one about 'agreeing' to do activity but it is all coming from the same direction - justifying health care professionals' roles.

When I was a locum GP and then a trainee rheumatologist in 1980 I would do domiciliary visits where I was doctor, surgical nurse, OT, pharmacist, ward orderly, and vicar all rolled in to one. The district nurses were the same, even if they had to get me to write the scripts. This whole multidisciplinary team business seems to me a farce. Worse that the restrictive practices that destroyed governments in the 1970s.

I had something similar when my wife was ill and needed care at home. I was told that nothing could be booked in advance and that I should ring about 10.00 in the morning if I needed a social worker to come and help. Which wasn't much good if I needed to go and do a clinic leaving the house at 7.00. So I had to take 6 months compassionate leave. Fortunately my clinical lead agreed without a moment's hesitation. I realised how lucky I was, where most people wouldn't have been.

So I did all those jobs alone for six months to keep my wife alive.

 

[Maat]

I am not able to read many of the posts.
I had a care plan last year. I am severe / very severe. It was because of malnutrition.
In my experience it wont work unless all the people involved have , or the majority at least , a very good understanding and acceptance of the complexities / issues to do with very severe me.
I had involvement / input [ visits ] from Drs , community nurses and district nurses , social workers , dietitians , carers and a few others Too much.
It was a bit of a nightmare.so very difficult .frustrating. very very exhausting ,debilitating etc
it didnt start off well as the initial assessment was done by a community nurse and lasted about 1 - 2 hours.
And I cant remember agreeing to some things but that was because I wasn't able to take in what was being said after a while
and I wasn' t able to hear [not explaining things well - I don't mean with my ears - I think it was all too much and my brain started to shut down completely.]
One example of all the problems I had was an insistence that either the main bright light in my room was put on or the curtains drawn back. even though I had explained [ or tried to ] about my light sensitivity. and also often information wasn't passed on to all the people involved.

We hear you @Alis

This has been my last straw. I'm taking formal legal advice this week. Will update forum in due course.

I have both a social services care plan for the ME and also a CPA because I was sectioned.

Under the new NHS Long Term plan these can be merged. I now know why social services and the local mental health team spent weeks arguing over who was going to fund my care package at the beginning of 2021!

At a national level this is what's happening and therefore why there may be a need for an 'Agreed Care Plan' for those who have not been sectioned. In other words, voluntary mental health care plan!

I've found where this is all coming from this morning. WESSELY! and doesn't this just explain why Dan Poulter MP (former Health Minister) announced yesterday that he is crossing the floor in the House of Commons to help Labour with their plan for the NHS! He's a psychiatrist. Top Tory MP defects to Labour in fury at NHS crisis | Conservatives | The Guardian Wes Streeting (Shadow Health Secretary of State) this morning on BBC Laura Kuennssberg has confirmed that they will be following this mental health act reform.

1. It's part of the the NHS Long Term Plan NHS Long Term Plan 2019 Download full version, summary, easy read and video from here: NHS Long Term Plan » The NHS Long Term Plan

"As medicine advances, health needs change and society develops, the NHS has to continually move forward so that in 10 years time we have a service fit for the future. The NHS Long Term Plan is drawn up by frontline staff, patients groups, and national experts to be ambitious but realistic."​

The NHS Long Term Plan describes a:​

“new community-based offer [that] will include access to psychological therapies, improved physical health care, employment support, personalised and trauma-informed care, medicines management and support for self harm and coexisting substance use… and proactive work to address racial disparities.”​

Under it the former mental health Care Programme Approach (CPA) has morphed into "NHS England - NHS - Community mental health framework for adults and older adults’: www.england.nhs.uk/publication/the-community-mental-health-framework-for-adults-and-older-adults

Here you can download a fact sheet on the changes to the current CPA which relates to a formal mental health diagnosis. As I was sectioned I have one which includes S117 aftercare and a community treatment order (CTO) - mandatory treatment. No consent.​

2. In this document Prepared by: NHS England and NHS Improvement and the National Collaborating Centre for Mental Health
community-mental-health-framework-for-adults-and-older-adults.pdf (england.nhs.uk) sets out the changes.

"Promoting equality and addressing health inequalities are at the heart of NHS England’s values. Throughout the development of the policies and processes cited in this document, we have:

• given due regard to the need to eliminate discrimination, harassment and victimisation, to advance equality of opportunity, and to foster good relations between people who share a relevant protected characteristic (as cited under the Equality Act 2010) and those who do not share it; and
• given regard to the need to reduce inequalities between patients in access to, and outcomes from, healthcare services and to ensure services are provided in an integrated way where this might reduce health inequalities​

"Local areas will be:

“supported to redesign and reorganise core community mental health teams to move towards a new place-based, multidisciplinary service across health and social care aligned with primary care networks.”

In line with the Clinically-led Review of NHS Access Standards, b four-week waiting times for adult and older adult CMHTs will be tested with selected local areas, as part of wider testing of these new models in 2019/20 and 2020/21, supported by over £70 million new funding.

In parallel, the Independent Review of the Mental Health Act has called for “a reinvigoration of our community services”, which is what this Framework and the Long Term Plan seek to deliver."

"This Framework provides an historic opportunity to address this gap and achieve radical change in the design of community mental health care by moving away from siloed, hard-to-reach services towards joined up care and whole population approaches, and establishing a revitalised purpose and identity for community mental health services. It supports the development of Primary Care Networks, Integrated Care Systems (ICSs) and personalised care, including how these developments will help to improve care for people with severe mental illnesses.

This is why community mental health services are at the heart of the NHS Long Term Plan. a One of its key objectives is to develop “new and integrated models of primary and community mental health care [which] will support adults and older adults with severe mental illnesses”.d,e The NHS Mental Health Implementation Plan 2019/20 – 2023/24f describes our overall approach to delivering these models and the major new Long Term Plan investment over the next 5 years that will support delivery, reaching almost £1 billion extra per year by 2023/24.​

3. Now we have evidence to explain two things:

• why this Joint statement in response to NICE guidance on ME/CFS (rcgp.org.uk) did not include the Royal Colleges of Anaethetists and Haematology.
• why the Implementaton and Delivery Plan for ME/CFS promised for the end of last year will not be published until 'later this year', when it is likely to become Labour's problem. This illness is a MAJOR problem for the NHS Long Term Plan because of the issues of consent and coercsion conflicting with the NICE Guideline NG206. That's why it took the threat of a Judicial Review to get the Guideline published.

The Post Office Inquiry a couple of weeks ago highlighted the lack of state accountability for policies of arm's length bodies, which can have huge impact on people's human rights, described as a 'democratic deficit'.

I don't care what the Health Minister will have to say in the Westminster Hall debate on 1st May. It's long past time to start a legal move to take the house of cards surrounding this illness down. The 67 year debate over the categorization of this illness and pathophysiological or mental and behavioural and harmful treatment must cease It's caused deaths, suicides, irreparable harm and breaches every single human right patients have. Alis' experience confirms it. Thank you so much for sharing your testimony.

I have already prepared a timeline of 2023 so people can see the linkages. I'll start a new thread when I've calmed down as I'm currently incadescent with rage which is causing an immediate crash.

ETA: This is exactly the reason 65 charities wrote to Theresa May to ask her to reconsider the appointment of Wessely to undertake the review of the Mental Health Act. Did you realise that they wanted to merge PIP with Universal credit? Letter to the Prime Minister - reconsider of the appointment of Professor Simon Wessely - Inclusion London

ETA: Missing link to Re-think fact sheet. What is the Care Programme Approach (CPA)? (rethink.org)

ETA: Haematology

 

[Peter T]

We hear you @Alis

This has been my last straw. I'm taking formal legal advice this week. Will update forum in due course.

I have both a social services care plan for the ME and also a CPA because I was sectioned.

Under the new NHS Long Term plan these can be merged. I now know why social services and the local mental health team spent weeks arguing over who was going to fund my care package at the beginning of 2021!

At a national level this is what's happening and therefore why there may be a need for an 'Agreed Care Plan' for those who have not been sectioned. In other words, voluntary mental health care plan!

I've found where this is all coming from this morning. WESSELY! and doesn't this just explain why Dan Poulter MP (former Health Minister) announced yesterday that he is crossing the floor in the House of Commons to help Labour with their plan for the NHS! He's a psychiatrist. Top Tory MP defects to Labour in fury at NHS crisis | Conservatives | The Guardian Wes Streeting (Shadow Health Secretary of State) this morning on BBC Laura Kuennssberg has confirmed that they will be following this mental health act reform.

1. It's part of the the NHS Long Term Plan NHS Long Term Plan 2019 Download full version, summary, easy read and video from here: NHS Long Term Plan » The NHS Long Term Plan

"As medicine advances, health needs change and society develops, the NHS has to continually move forward so that in 10 years time we have a service fit for the future. The NHS Long Term Plan is drawn up by frontline staff, patients groups, and national experts to be ambitious but realistic."​

The NHS Long Term Plan describes a:​

“new community-based offer [that] will include access to psychological therapies, improved physical health care, employment support, personalised and trauma-informed care, medicines management and support for self harm and coexisting substance use… and proactive work to address racial disparities.”​

Under it the former mental health Care Programme Approach (CPA) has morphed into "NHS England - NHS - Community mental health framework for adults and older adults’: www.england.nhs.uk/publication/the-community-mental-health-framework-for-adults-and-older-adults

Here you can download a fact sheet on the changes to the current CPA which relates to a formal mental health diagnosis. As I was sectioned I have one which includes S117 aftercare and a community treatment order (CTO) - mandatory treatment. No consent.​

2. In this document Prepared by: NHS England and NHS Improvement and the National Collaborating Centre for Mental Health
community-mental-health-framework-for-adults-and-older-adults.pdf (england.nhs.uk) sets out the changes.

"Promoting equality and addressing health inequalities are at the heart of NHS England’s values. Throughout the development of the policies and processes cited in this document, we have:

• given due regard to the need to eliminate discrimination, harassment and victimisation, to advance equality of opportunity, and to foster good relations between people who share a relevant protected characteristic (as cited under the Equality Act 2010) and those who do not share it; and
• given regard to the need to reduce inequalities between patients in access to, and outcomes from, healthcare services and to ensure services are provided in an integrated way where this might reduce health inequalities​

"Local areas will be:

“supported to redesign and reorganise core community mental health teams to move towards a new place-based, multidisciplinary service across health and social care aligned with primary care networks.”

In line with the Clinically-led Review of NHS Access Standards, b four-week waiting times for adult and older adult CMHTs will be tested with selected local areas, as part of wider testing of these new models in 2019/20 and 2020/21, supported by over £70 million new funding.

In parallel, the Independent Review of the Mental Health Act has called for “a reinvigoration of our community services”, which is what this Framework and the Long Term Plan seek to deliver."

"This Framework provides an historic opportunity to address this gap and achieve radical change in the design of community mental health care by moving away from siloed, hard-to-reach services towards joined up care and whole population approaches, and establishing a revitalised purpose and identity for community mental health services. It supports the development of Primary Care Networks, Integrated Care Systems (ICSs) and personalised care, including how these developments will help to improve care for people with severe mental illnesses.

This is why community mental health services are at the heart of the NHS Long Term Plan. a One of its key objectives is to develop “new and integrated models of primary and community mental health care [which] will support adults and older adults with severe mental illnesses”.d,e The NHS Mental Health Implementation Plan 2019/20 – 2023/24f describes our overall approach to delivering these models and the major new Long Term Plan investment over the next 5 years that will support delivery, reaching almost £1 billion extra per year by 2023/24.​

3. Now we have evidence to explain two things:

• why this Joint statement in response to NICE guidance on ME/CFS (rcgp.org.uk) did not include the Royal College of Anaethetists
• why the Implementaton and Delivery Plan for ME/CFS promised for the end of last year will not be published until 'later this year', when it is likely to become Labour's problem. This illness is a MAJOR problem for the NHS Long Term Plan because of the issues of consent and coercsion conflicting with the NICE Guideline NG206. That's why it took the threat of a Judicial Review to get the Guideline published.

The Post Office Inquiry a couple of weeks ago highlighted the lack of state accountability for policies of arm's length bodies, which can have huge impact on people's human rights, described as a 'democratic deficit'.

I don't care what the Health Minister will have to say in the Westminster Hall debate on 1st May. It's long past time to start a legal move to take the house of cards surrounding this illness down. The 67 year debate over the categorization of this illness and pathophysiological or mental and behavioural and harmful treatment must cease It's caused deaths, suicides, irreparable harm and breaches every single human right patients have. Alis' experience confirms it. Thank you so much for sharing your testimony.

I have already prepared a timeline of 2023 so people can see the linkages. I'll start a new thread when I've calmed down as I'm currently incadescent with rage which is causing an immediate crash.

Thank you @Maat for your contributions, I am currently operating near the upper limit of my cognitive capacity, so am restricted in making useful contribution, but wanted to say this is useful and important information.

 

[Evergreen]

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?

Because the plan the doctor or therapists have could be daft. For instance, if the physio is suggesting starting sitting out for 10 minutes 3 times a day and the person is currently bedbound and thinks they’ll faint or crash if they do this, they would not agree, and they’d suggest something a bit less daft, like sitting up in bed for 2 minutes twice a day to start with, or ask to start at a much lower level, and the physio would suggest some levels, and they’d agree on one.

Or a doctor could be suggesting reducing a pain drug, and the person might suggest not changing drugs until they see how they do with activity increases.

Or the OT is suggesting no afternoon naps, and the person says, no, I'm fine with doing everything else, but I don't agree to reducing naps.

Or the whole plan might be about physical activity but the person doesn’t give a hoot about physical activity, their priority is cognitive activity, so instead they plan various steps towards being able to email or talk with a friend. (Am not suggesting any of these are likely to be successful, no matter what the compromise is.)

The person having input into what they're going to be doing is a good thing. A plan could absolutely be used against a person by an abusive professional. But a plan can also be used by a person to protect themselves from things they have not agreed to and get their needs met in new settings, as Kitty describes.

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

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.

Could this interaction not be described as you and the patient agreeing that they won't take the drug? You recommended, they declined, you accepted that.

If they opted for my suggestion then it wouldn't make sense for me to 'agree' to that.

You and the patient agreed to try the drug - you suggested, they agreed, that's the 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'

Can you point me to where? I don't see this exact term anywhere in either the BACME doc or NICE doc – I searched for “agree” and came up with things like (these are both from the BACME doc):

Interventions and goals to be agreed will also need discussions regarding the priorities for the patient and the pace at which any changes will be attempted, in a flexible and collaborative manner. Showing understanding of the limitations the patient faces and negotiating an agreed approach can be crucial in making progress in the longer term.

For severely affected patients, talking is very tiring and the ideal duration of a session may initially be short, sometimes only a few minutes.
We recommend that the initial length of session should be discussed and agreed at the outset between clinician and patient, ideally before the first visit. For very severely affected patients, length of session may need to be discussed with the carer first, and then verified with the patient themselves.

In the NICE document, they talk about Care and Support Plans a lot, and agreeing them and priorities and goals.

The issue is not agreement, but the plan for the "changes" that will be attempted, and the belief that therapies or rehabilitation lead to progress. The person agreeing to a plan is being given information by health professionals about what is and is not feasible, and that information may not be accurate, so they could end up with a plan that is completely inappropriate for them. But they should be able to change the plan, and that's in both the NICE and BACME docs.

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

Well, it would be trying to do what they agreed to try to do. If someone doesn’t take a drug they’ve been prescribed and agreed to take, it’s usually because of side effects or logistical issues (like they’re supposed to take it 1 hour before meals but their carer only arrives 30 mins before meals or some such). Yes, plenty of doctors would just bang on about how important it is they take the drug, but the good ones will find out the problem and see if there’s a solution (eg different drug with fewer side effects or that can be taken with food, or pillbox beside bed). I don't think the "agreed" part is the problem, the problem is the health professionals' proposals of what will help, and response to feedback.

Healthcare is not a collaboration. It is providing a service.

There’s a big difference between
· a medical service that involves someone coming to an appointment once every 6 months and taking pills every day and getting injections once a week, and
· a therapy service that involves

o a person coming to a 1-hour therapy session 5 days a week and doing “homework”, or
o a person staying at an in-patient rehab facility for 6 months and doing hours of often gruelling rehab every day​

In therapies or rehabilitation, there’s a totally different level of commitment required, and a totally different level of, yes, collaboration, because so much more is being asked of the person.

I don’t see any evidence that patients and health professionals agreeing or collaborating on some kind of plan is the problem - though an abusive health professional could definitely use one as part of their abuse of a patient. The problem is the content of the plan, and the mindset of the health professional eg in this kind of scenario (from the NICE 2021 guidelines):

When a person with ME/CFS has a relapse, review their care and support plan with them (if needed), and discuss and agree a course of action, taking into account:
•possible causes of the relapse, if known
•the nature of the symptoms
•the severity and duration of the relapse (bearing in mind this can be years).

One health professional might say, listen, I think GET may have caused or contributed to this relapse, so I think we should reduce your activity level and not attempt increases in physical activity or cognitive activity. I think we should focus on pain relief, getting your bathroom adapted and getting funding for carers. What do you think?

Another health professional might say, you relapsed because you started listening to those unhelpful thoughts again. I think you should do the Lightning Process or be admitted for intensive rehabilitation. Which do you want to do?

The difference between these health professionals is not whether they agree a plan with the patient or not. It’s the content of what they propose, and the rationale behind it. It's in the person's interest that their agreement is sought before a new care plan is drafted, because the plans by the two hypothetical health professionals above would be two very different plans, one of which they might agree to, and one of which they might not. If they don't get a chance to agree or disagree, then you've potentially got a patient shipped off for intensive rehabilitation against their will. How would that be better?

In any therapy or rehabilitation there's a lot of talk about whether patients are complying or not, which can be fairly distasteful if there is not recognition of the reasons why. In ME/CFS the problem is big disagreement on the why.

Edited to fix formatting.

 

[Maat]

Thank you @Maat for your contributions, I am currently operating near the upper limit of my cognitive capacity, so am restricted in making useful contribution, but wanted to say this is useful and important information.

@Peter Trewhitt everybody's contribution towards the science discussions, treatments, the documents they've shared, their own individual area of reasearch and expertise, their opinions, and their experiences, the journalist exposes, the experts in different fields, have helped me focus my arguments, that includes yours and those who can't comment, but expend what little energy they have to just 'like'. I'm getting advice for all, using my own case history as an example of the worst of the the state and institutional abuse, denial of the right to health, ill treatment and neglect of people with this illness with reputational damage and denial of human rights.

 

[Jonathan Edwards]

Thanks for the lengthy reply @Evergreen.

I agree that this is what it is suppose to sound as if it means but along with a lot of others here I am pretty sure it isn't intended to mean that at all.

The texts mention agreeing plans, some in relation to care and some in relation to activity. My concern is with the activity bit - which creeps into the NICE guideline despite there being not a scrap of evidence to support any advice on doing activities.

The clear problem is that therapists will use the fact that a 'plan has been agreed' to lean on patients to do what the therapist thinks is best and to go on doing the plan even when it turns out to make them worse. I have recently talked to health care professionals who quite explicitly say that is the right thing to do. To push people. And children at that.

It is like 'person centred care' which sounds very nice but in fact means that because there is no reliable evidence for any particular therapy approach you make it up for each person. That is quite explicit I the BACME document too. A very strange distortion of logic.

 

[Trish]

In therapies or rehabilitation, there’s a totally different level of commitment required, and a totally different level of, yes, collaboration, because so much more is being asked of the person.

I get what you are saying in terms of the effort and time commitment needed from the patient when they agree to 'therapy' but I don't agree with some of your conclusions.

I don't think it's just about whether the therapist is abusive. There's something more in the examples you give that I find deeply uncomfortable.

For example, why is it any business of a therapist dealing with someone with ME/CFS to have to reach agreement on planned exertion. The whole point of pacing is for patients to be in control of their day to day exertion with the clinician providing tools they may find useful such as information leaflets, wearables, apps and other aids the pwME might find helpful. Symptom contingent pacing is not based on 'we agree I will sit up for x minutes y times a day, it's based on the pwME doing what they are able and want to do that day. If the pwME finds they can sit for one minute one day, and five minutes another day without detriment, then that's what they can decide to do, not some pre-agreed schedule.

I can see if someone is in hospital, they will need a written and agreed document that all the clinicians can read that spells out their limitations and needs, but even then, scheduled exertions are potentially harmful and should be determined by the pwME.

And even for psychological therapies, the whole 'homework' thing seems to me to be wrong. If the individual decides for themselves that they want to try some out of therapy session activity that arises in therapy, fine, but calling it 'homework' implies compulsion, and a power imbalance.

 

[Maat]

but calling it 'homework' implies compulsion, and a power imbalanc

That's certainly how children, students in college and university will view it. It's how I viewed it as a 40 something adult.

Your points about pacing are fundamental to the debate.

In this article from the MEA following the publication of the new NICE guidelines the understanding was clear The new NICE guideline on ME/CFS is published! - The ME Association

• "Provides sensible guidance on activity and energy management in order to avoid symptom exacerbation and no longer recommends GET
• Recognises the special problems faced by children and those with severe ME" [my bold]

The cummulative affect of persistently exceeding the energy envelope is what causes the prolonged serious crashes which can last years and from which some, like myself, have never been able to restore previous functioning. Only the patient knows what their energy envelope is, not the HCP pushing intensity of activity having explained in a 'mindfulness' way backed up by technical explanations of how the body works such as the 'stress' response, how our thoughts emotions and beliefs can create or exacerbate our symptoms, so expect a worsening of symptoms.

Doesn't explain the blood situation though does it! Blood carries oxygen around the body.

 

[Evergreen]

I think we're agreeing here (though no need to nail it down in a plan, I think we'd agree!) What my lengthy post did not say, was that I do not like at all that the new NICE guideline allows therapists to keep delivering the same things in roughly the same way. But it does.

1.11.8 Refer people with ME/CFS to a physiotherapist or occupational therapist working in an ME/CFS specialist team if they:
•have difficulties caused by reduced physical activity or mobility (also see the sections on physical functioning and mobility and care for people with severe or very severe ME/CFS) or
•feel ready to progress their physical activity beyond their current activities of daily living (see the section on physical activity and exercise) or
•would like to incorporate a physical activity or exercise programme into managing their ME/CFS (see the section on incorporating physical activity and exercise).

And that's what most if not all the BACME therapists are probably still implementing. Maybe with a bit less whip-cracking. I have to hope that some NHS therapists really have changed their practice, and that some were already focusing on just helping people manage their energy and supporting them.

My concern is with the activity bit - which creeps into the NICE guideline despite there being not a scrap of evidence to support any advice on doing activities.

Exactly. Completely agree.

The clear problem is that therapists will use the fact that a 'plan has been agreed' to lean on patients to do what the therapist thinks is best and to go on doing the plan even when it turns out to make them worse. I have recently talked to health care professionals who quite explicitly say that is the right thing to do. To push people. And children at that.

I think they do this with or without a care plan. It's just what therapy/rehab is about - increasing activity, wherever possible. Unless a clinic explicitly states that they provide supportive care only and do not seek to increase activity, I wouldn't go near it.

why is it any business of a therapist dealing with someone with ME/CFS to have to reach agreement on planned exertion. The whole point of pacing is for patients to be in control of their day to day exertion with the clinician providing tools they may find useful such as information leaflets, wearables, apps and other aids the pwME might find helpful. Symptom contingent pacing is not based on 'we agree I will sit up for x minutes y times a day, it's based on the pwME doing what they are able and want to do that day. If the pwME finds they can sit for one minute one day, and five minutes another day without detriment, then that's what they can decide to do, not some pre-agreed schedule.

Yep, totally agree. But it's allowed for in the NICE guidelines, so NHS therapists are allowed to keep doing it. So in that scenario, where they're still doing it, and fresh patients are coming in, I'd at least like those patients to have the option of not agreeing to certain elements, rather than just having an even worse thing imposed on them, with no redress.

the whole 'homework' thing seems to me to be wrong. If the individual decides for themselves that they want to try some out of therapy session activity that arises in therapy, fine, but calling it 'homework' implies compulsion, and a power imbalance.

Again, agree. There is a power imbalance in any pairing between a health professional and a patient. That's why it's so important that they're not peddling nonsense. And in the case of activity-increasing therapies for ME/CFS, they are.

 

[Evergreen]

It's just what therapy/rehab is about - increasing activity, wherever possible.

For example, see the stakeholder comments on the draft NICE guidelines:

British Society of Rehabilitation Medicine
“if the person never considers or discusses increasing the activities they undertake, then the person can never get better…
The rehabilitation approach is “If you wish to improve/increase activity ‘A’, then we need to help you develop a plan for you to carry out whereby you incrementally improve or increase activity ‘A’”…
• deconditioning (lack of cardiovascular. respiratory and muscular fitness) is not the cause of chronic fatigue syndrome, but it is undoubted a consequence of chronic fatigue syndrome and reducing its effects needs to be integral to any self-management plan
• the focus should be on increasing, slowly, the amount and range of activities undertaken that the person wants or needs to undertake
• During this process, the focus should be on activities achieved, not symptoms…
This is the approach that is used by rehabilitation services for almost all patients with long-term disabling conditions, most of whom have deconditioning as a secondary consequence.

(Interestingly, the British Society of Rehabilitation Medicine is against exercise for exercise’s sake, and its comments would seem to suggest that it would be against GET, but for the approach to activity increases in CBT and AM.)

Association of British Neurologists
“We know that encouraging activity is central to rehabilitation in all neurological disorders as well as other physical conditions…We would therefore need robust evidence of harm from exercise in ME/CFS to justify any recommendation that goes against established rehabilitation practice.”

Faculty of Sport and Exercise Medicine (UK)
“Fundamentally, this guidance abandons the first principles of rehabilitation and advocates that we do nothing other than try to prevent decline. However, it restricts the fundamental tools which we use to prevent decline in every other condition – mainly physical activity.”