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

So why don't they put their efforts into kicking up a stink about this being unacceptable?

 

What a dog's breakfast of inconsistencies that page is - but written with an air of total authority. Presumably the psychologists thought 'oh well, they say it works, so we don't need to understand it, we just need to deliver it.'

 

agree pacing needs to be dropped and ambiguity needs to also be stomped on when it’s deliberately introduced by others ‘pretending it’s by accident or misunderstanding’

I’d use the term conservation or something even better and more specific

that at least underlines we have less. Which is the bit all the old phrases try to deny and pretend it’s about ‘not managing yourself properly ‘ to hide that someone has 10% of a normal person energy wise and is achieving 90% so should be admired. I wonder if they actually think it’s we just ‘feel’ we have less or that we only have a little bit less or not even that but it’s some sort of ‘wasting energy’ when most of us have always had to not sweat the small stuff

sadly there is no respect in the area that ‘wants to help’ and they don’t want to listen to the problem properly but reframe it and cheat with ‘magicking energy’ nonsense and then not talking about the long term impact of that

I don’t think people need micro management at all in their choices as autonomy is so fundamental to a human. I do think they need the message to be being put out so that those around understand not to

1. waste their energy (and lots do particularly having fun playing sophist argument with the next point)
2. Pretend not to get the not hard concept that just because someone saved up energy and pushed through to achieve x doesn’t mean they can do it again and it wasn’t without detriment to them

all of this is just bigotry at the bottom of it

the more you think about it the more you realise it’s this. About selling that it isn’t such a bad illness that it needs research. By playing on the fact that they’ve made the world hostile so we can’t go in the street and collapse as we’ll be shouted at and hurt. So they don’t see us ill and the medical profession break our trust by pretending they don’t see the disability only they would be allowed to see

even if we felt unwell and were in front of a disbeliever we aren’t safe doing anything other than performing at great harm to ourselves to get somewhere safe - because they’ve been okayed or even encouraged to harm us by shouting at us or pushing the buttons of our illness. They’ve made it unsafe for us to ‘prove it’ then made a career on telling fibs about us

I’ve often before I realised how bad things were in the sector been puzzled why people weren’t coming to US for advice on efficiency because we’ve had so much experience of doing things with less

It shouldn’t have been needed to say this but it’s so far beyond time now that it’s not ok to have people who’ve either simplified the problem wrongly (which I call laziness) or chosen to reframe it as ‘we don’t know our own minds’ speaking over us when you look at other areas like eg asd and the work happening there to get things properly describe understood etc to others

 

So AfME says

So not a care and support plan after all then? It’s a self advocacy tool. Right, got it. *sarcasm*
I would not use the document to self advocate because it’s misconceived, misleading and too onerous to use. The letter covers it.


Thank you @Trish for your letter, and to all that signed.

 

Yep. I'm moving away from using energy as well as pacing, substituting it with words like capacity and tolerance if they work in the context.

I think talking about energy in relation to some symptoms might make it harder for others to understand. The experience of struggling to cope with noise due to a pounding headache is common, but it's rarely described as a lack of energy. It's more a lack of wellness, which is the same reason we struggle with it.

 

these issues are discussed on this thread
Bias, misleading information and lack of respect for alternative views have distorted perceptions of myalgic encephalomyelitis/cfs 2017, Goudsmit | Science for ME (s4me.info)

 

Yes

One could understand anyone giving positive feedback to a “fatigue” clinic. Anything less probably wouldn’t go well for them, not with medics beyond the clinic who need a clinic to review the patient as someone who showed willingness to engage with the process and good will towards clinicians at the clinic.

But only some would manage extra participation and those would be the most enthusiastic and the most able. Probably the least severely affected of those with capacity to physically attend the clinic.

Most people attending a clinic are only a few months or years into their illnesses or diagnosis. Where this is so they may not have yet been able to access much information or to sift through information from outside of the NHS on how best to manage their energy and conserve health.

Even years at milder levels might not be time to learn by trial and error how exhausting and detrimental mental activities and paperwork can be or how long the negative consequences of such over exertion can last.


So most people attending a clinic wouldn’t represent the ME experience physically nor our experience in terms of knowledge base.

 

Has there been research on “pacing” as we understand it?

and why are Gladwell’s patients getting preference in developing guidance? What if I wanted to contribute, I have to move to Bristol?

 

How about a campaign where we self-advocate for access to an experienced clinician?

 

I would stake my reputation on this also not being proven by robust and methodologically sound studies for chronic pain.

 

Very interesting!

 

Yes!

I use capacity often. I don’t use tolerance. Because I am often told by HCPs that my tolerance will increase if only I build up slowly and stop avoiding painful stimulation.

I don’t like to use energy because as @MrMagoo says above I don’t have it to spare. But also because energy sounds so good. So energetic.


I often struggle for an alternative term though because I have been laughed at by doctors for saying I am unwell.

But I think I am just gonna have to ride it out and start using “lack of wellness”.
I like it.

 

I’m going with symptom management.

If I can, I’ll manage my symptoms so they don’t get out of hand. But sometimes they’re unmanageable. They never go away, and by managing them I’m herding cats but sometimes most of the cats respond when I throw them some treats.

 

At the risk of going on about this, I feel like symptom management takes away the patient-blaming, and allows for discussion about what the particular symptoms are.

symptom : brain fog
Management strategy: keep things in their right place, ask ppl to put requests in writing/email/text so. I. Don’t forget, keep a paper diary open on this week in the kitchen, do any monthly things around benefits pay date every month, take breaks through the day from cognitive activity, sit in silence, 8 hours sleep every night, ask X to help when I’m not coping.

symptom : fatigue
Management strategy : don’t have a job, don’t iron anything, reduce leaving the house to once a week, reduce phone calls to unde an hour, once a week. Lie down for at least 16 hours per day. Box breathing.

 

It’s going to make it really hard for people to say “have you tried…”

 

It does, but I worry about suggesting they're really manageable. And that if I'm not succeeding at the managing thing, it's a skill issue.

All too often it feels like managing floodwater. Attempts to get it out of one place only result in moving it somewhere else, you're not actually getting rid of it.

It's 'managing' rather than managing.

 

Copied from another thread (link below) - but I do think it's relevant on this 'template' thread.

https://www.s4me.info/threads/open-...-and-support-plan-template.39894/#post-550074




'The Care and Support Plan author Peter Gladwell's profile on the BACME site:


About Dr Peter Gladwell (BACME Board Member)
BSc, PhD, MCSP.

'Pete is a Clinical Specialist Physiotherapist and Service lead in the Bristol M.E. Service. He also works in the North Bristol NHS Trust Pain Management Service. Pete’s clinical roles have included Pain Management Programmes and co-delivery with lay tutors. Pete also has a longstanding involvement with the Physiotherapy Pain Association, in the Chartered Society of Physiotherapy, has collaborated extensively with Action for ME on their Pacing Guide, and has co-authored a report on the Action for ME 2010 rehabilitation survey. Pete’s PhD investigated the use of TENS devices by people with chronic musculoskeletal pain. He supports undergraduate physiotherapy education about ME/CFS, and is also involved in the delivery of the Masters level fatigue course at the University of the West of England. Pete co-delivers the Physiotherapy Pain Association “Pain and Sleep” course.'

https://bacme.info/people/dr-peter-gladwell/




So, the 'lay tutors' who co-deliver Pain Management programmes with Gladwell - are they pain patients from his clinic? So is it that Peter Gladwell recruits certain patients from his clinics to 'help' deliver pain programs and 'help' write care plans - but the course/care plan content is always a vehicle for Peter Gladwell's own, unevidenced, beliefs/ideology about the medical conditions.




Peter Gladwell has been embedded in AFME for many years. And now he's embedded in the MEA too in partnership with Sarah Tyson:

'ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services

The ME Association is very pleased to announce that a £90,000 research grant has been made for a 12-month study that will enable Professor Sarah Tyson (Manchester), Dr Mike Horton (Leeds), and Dr Peter Gladwell (Bristol), to apply gold-standard techniques and develop patient-reported outcome measures (PROMs) and a clinical assessment toolkit to monitor people with ME/CFS who use NHS specialist services.'

https://meassociation.org.uk/2023/0...nt-toolkit-in-nhs-me-cfs-specialist-services/





Peter Gladwell (aided by Sarah Tyson and the 2 main ME charities) is attempting to control the message about
WHAT ME is:

Peter Gladwell: 'With M.E., the body’s systems are thought to have become poorly regulated and hypersensitive. The body is in a constant state of 'high alert', almost as if a switch has been thrown and the whole system is in a state of emergency'



AND Peter Gladwell is attempting to Dictate what care ME patients should have, and leaving out what he thinks we don't need and shouldn't have (because our actual medical and care needs don't fit with his own personal beliefs about ME) - he is Dictating by creating influential documents which he claims were co-created by ME patients.




Peter Gladwell is sidelining NICE. By getting his belief-based 'clinical assessment toolkit', and his 'care and support plan' into the NHS, and accepted by both NHS professionals and by unwary patients who are desperate for any help and don't see the pitfalls embedded in Peter Gladwell's work. And our charities (AFME and MEA) have helped him to do it. The NICE Guideline NG206 may as well not exist.


WE have a very big problem.'

.

 

I agree, the “management” part isn’t great. But establishing we have symptoms which need to be mananged is good, I think. Energy is a “red herring” just like “chronic fatigue” was.
What we all have, first and foremost, are symptoms. All symptoms are affected by lack of energy. Many symptoms are exacerbated by PEM/PESE. Instead of starting conversations with us about fatigue, let’s start with mobility, cognitive issues, vision problems, pain etc.