Open letter to Action for ME with concerns about their promotion of a problematic Care and Support Plan Template

@PhysiosforME illustrate that Physios can get (ie understand) ME and what their role can be.

[sorry cross posted with @Trish ]

 

That’s my point - it’s ’this Area of physio’

the one that’s decided to focus on behavioural and fatigue

is there a role for that - and I think that’s an important question Because I assumed not when guidelines changed

and their behaviour since has underlined it

might be a different physio area like physios firME taking it on too

Does it need to be renamed and distinguished from this old paradigm/how can we clarify that ?

what do we call the difference between the two?

 

But I think MrMagoo is essentially right.

Physios for ME are people who happen to be Physios who understand the problems with physio approaches to ME/CFS. And those problems relate to a general problem with a profession that it is based on a practice of doing what you think ought to work, without any reliable evidence base. The problem is the way the professionals is taught and that teaching is deeply ingrained.

I don't think people with ME/CFS need physiotherapists. A team of doctor plus specialist nurse with OT training makes most sense to me.

 

As far as I can work out the 'Government Delivery Plan' says nothing about provision of services. My limited involvement in service development suggests to me that it is delegated to people in local Trusts who probably have no real understanding of any of this. Patients may get involved but probably themselves have little understanding of options or what is really needed.

So the situation is pretty dire. But that still doesn't justify pretending to produce a care plan when nobody is providing care - as you have pointed out.

 

Thanks @Trish for writing this and others for very considered comment, it takes so much energy for people as broken as us to deal with stuff like this.

I've not got the energy to digest the whole document, but my immediate, gut response is it is obviously well intentioned, but flawed and the connection to Bristol NHS (and Gladwell?) is presumably due to the location of where AfME are based. Which of course doesn't excuse it and in a way makes it worse that they have not been able to influence their closest NHS trust - I dunno...

However, what really grinds my gears about this (sorry, am in proper grump mode this morning and could be in a minority of one in having this view), more than the content, is the actual document itself. And, I might be being unfair, placing too high an expectation, but, it's a mess. Huge swathes of text, not neatly broken into paragraphs, bullet points half-way down pages or straddling pages where it would have just been neater to remove a blank line or ten, insert a page/section break.

It's like the attitude on presentation at sign-off was that'll do. And that just annoys me. Are we only worthy of, that'll do? I know it's a template that will be b*stardised every time it's filled in, but, surely, start with something that is professional, something to be proud of, not this half-baked mishmash of meh.

I do feel for AfME (sometimes), they are damned if they do and damned if they don't, it's not personal, but, surely the do should pass even the most basic of presentational QA at sign-off.

<steps away from the keyboard for a while>

 

Great it's been acknowledged and is being looked at -well done Trish !