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

Sean · Aug 29, 2024 at 12:04 PM

What @bobbler said.

Especially this:

bobbler said: ↑

To put it bluntly: the behaviourists have a behaviour issue,...
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There certainly is a psycho-social pathology in play here: extreme psychopathophilia.

Lou B Lou · Aug 29, 2024 at 5:47 PM

bobbler said: ↑

Moved posts

JUst to come back to this one, because there is a somewhat specific and succinct point of a very important thing to add to the list of what needs to be transformed for ME care:

The idea of 'behaviour' needs to be detoxed out of ME care and ME staff. I'd actually like to start calling it it's own 'ogyny' label. Because it is a manipulation and deliberate re-framing of when people are talked about or listened to making sure the facts aren't heard and are re-envisaged. And of course it is wrong and misleading and has led to the utterly terrible treatment we've suffered and the reason the whole subject hasn't moved on. It has also been the cause of huge harm.

All these subtle and not subtle tropes and messages need to be called out and de-toxed because they are feeding and perpetuating what we see all over the place.

To put it bluntly: the behaviourists have a behaviour issue, that noone is calling out due to their tactics (acting faux offended) and the target being generally the most vulnerable. But that paradigm and type of staff no longer should have any place in ME/CFS, and due to the history of it needs active action to remove its tendrels affecting our lives and interfering with any treatment or support.

Of course they want half-measures and little change. But the old tropey harmful 'guidelines' caused a huge amount of problems and need some black and white lines to be drawn on what is unacceptable to even begin giving people their rights as human being back. And the start of that is calling out the crap where people use old aggressions as an excuse in themselves to leave 'less bad aggressions' in as justifiable, instead of noting that means we need strong messaging calling out that any misunderstanding along those lines is now unacceptable.

They also don't seem to want to accept that their 'general' doing this speak to people like children approach was developed off the back of debunked research and ideas burdened onto pwme then spread under the guise and fake claims of 'MUS' and 'functional' and whatever other trend word. So those need kicking out too, because they never worked for anyone. So dumping pwme under the same old claiming its OK because it 'general' not specific means all of that needs sorting.

Describing how PEM affects people's sleep and debility and pain in terms of 'behaviour' - when normal medics would ask about eg how is your sleep quality, is the pain changing or affecting that and wouldn't dream of having someone with something else being assumed to just not be behaving right and needing some training in it. People who've learned something by rote and want to offer what they want to offer and 'make those people fit it'.

Terming it 'help' is the classic. Whilst refusing to offer help of the type we do need when we need it - or even ask us all as a starting point BTW! - but imposing what they want to offer on us and telling us it's that. A lot of the nonsense on these plans are about telling others 'who we are' which is both inaccurate and is suggesting things which aren't priorities for us, but sure as heck relate to suggesting eg demand to GPs who sit on a CCG/ICB to sign off more of that stuff. It's a vicious circle.

We don't want money spent on mindfulness over functional support with forms or adjustments, we'd rather not being stressed by tasks we can't complete due to having no support then told it's our attitude. Thanks. And others we need to hear our symptoms being suggested we'd benefit from therapies to help us 'keep calm'.

We want a form explaining what the condition really is. Consistently, so the misinformation gets slowly dissipated. A really good PEM description a la Workwell on everyone's plan could indeed work well from the advertising perspective of getting the penny-drop through. And we all know these people are the ones who one day might be involved with voting on what gets funded or not.

And I'd quite like at last these things to acknowledge I'm as straightforward, kind and objective as a person gets. You know 'who I am', I deserve to have that back please, without others being allowed to suggest nonsense that's all about them inferring anything else.

We have to desperately search for advocacy just to fight against the yelling telling us who we are and what we want and need. It's outrageous. And yes it is against informed consent because the very idea of behaviourism is removing the idea we deserve autonomy because 'they think they know better' based on suggesting and believing we 'lack insight', when turns out those are their false beliefs. But accept no accountability when the consequences time after time prove that is nonsense.
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THIS

.

Ash · Aug 29, 2024 at 6:37 PM

Kitty said: ↑

Just been trying to distil what managing ME actually involves—what the verb is—and I think it's waiting.

It's what I spend most of my time doing.

I'm not sure how to fill out and communicate all that implies, but (for me at least) it's the essence of it. And I have to do it, there's no alternative.
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Yes!

Ash · Aug 29, 2024 at 6:44 PM

Lou B Lou said: ↑

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.'

.
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Thank you @Lou B Lou for this completely perfect summary of this very specific and simultaneously vast yawning chasm of a problem.

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

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