The Agreed Care/Activity Plan

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?

 

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.

 

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.

 

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.

 

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...

 

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.

 

And so that is where the missing CBT went!

 

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.

 

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

 

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.

 

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.

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.

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

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.

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.

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):

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.

 

@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.

 

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.

 

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.

 

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.

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.

Exactly. Completely agree.

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.

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.

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.

 

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

(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.)