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

THIS

.

 

Yes!

 

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

 

I know I've written about my experiences with Gladwell's clinic before (which surely he shouldn't be leading any more per the NICE guideline, no?) but I'm not sure if I mentioned that at my first appointment there with the OT, she told me I had 'central sensitization' and gave a brief explanation. Having never heard the term before, I thought it sounded made-up.

 

I think you're probably right.

 

Oh, so the OTs make the diagnosis? And of a chronic pain disorder, in a CFS clinic. How misguided.

 

As far as I'm aware the idea of central sensitisation dates back to the Woolf animal-model paper "Evidence for a central component of post-injury pain hypersensitivity" (Nature 1983, link). I don't think there's any robust evidence for the concept outside of some limited chronic pain contexts. It found its way into the fibromyalgia literature and started being applied to "fatigue" as well, all in a very woolly, speculative and handwavy way.

 

Ah. Visit the baker, you come away with bread.

 

there are a lot of posts about this, see tags 'central sensitization' ,'central sensitisation'

 

It was put with these people 'to develop' and 'deliver' back then because at the time clearly the aim was to develop a psychosomatic guideline

I know we get lots of arguments about can’t say ‘definitely biomed’ etc

but the guideline at least debunked that behavioural worked and after decades of free reign and all funding and them refusing to test the null directly I think we have to assume the gravy train needs to end for psychosomatic behaviourists on this because at some point all their research finding nothing when they only look to ‘prove’ not reject their hypothesis means they should have proof by now if it existed.

we do know what they’ve delivered doesn’t help

so really it needed at that new guideline to be handed away from the behaviourists and psychosomaticists.

as @MrMagoo says you go to a baker you get bread . Maybe there are some in clinics who have a skill set , and want a career path that is back to the normal. But lots chose or were hired in as ambitious people seeking to do or prove ‘behaviourism’ or psychosomatic.

the charities fall for them charading it under pretending it’s just nice side offerings and not well hidden words but whether they’ve quals permitting them or not most just want to psych and label people

But we need to remember that if we want 'biomed' to even be considered, or the monitoring of the condition to be open to that methodology clinically there will need to be an introduction of staff who are not from this angle. Psychs will write notes that will be from that lens. Unless other HCPs are under biomed 'heads' or set-ups' we will get the norms of the physio or fatigue sector on 'progression' in subjective 'don't look for the harm' paradigms rather than it being seen as an illness you monitor goes one way in some (deterioration), another in others and how to annotate it medically.



I don’t get why people are confused and think BACme are hard done by or should still have their funding. They shouldn’t have the claim of ‘treating me/cfs’ and cfs and fatigue charades they’ve done to nick funding from a serious condition is attrociius.

The allies didn’t move fast enough on predicting it/moving ahead of this strategy - it was obvious they’d just try that on of say ‘well we just treat CF’ then brazen it out keeping their old funding that had been gained under the guise of what they do being helpful for any of it but particularly CFS. These people are clearly currently moving to make all clinics 'fatigue' and 'PPS' and then to say 'well ME/CFS' can 'have their symptoms treated' (even tho in a way that doesn't work for ME/CFS for sleep, fatigue etc) and get away with being commissioned for that - there will be no me/cfs funding to ask for commission-wise if we don't start looking at other people who would provide for the illness.

In this the idea of 'compromise' isn't the 'risk free' option they are being bombarded to believe, it's just a delay tactic.

Meanwhile on the diagnosis side they are clearly trying to move LC me/cfs towards FND. who then 'treat the symptoms'. The HCPs are good with that I assume as it's a throughput.

they are a supply led bunch of services drawing huge amounts of funding when you include research and related. From real healthcare.

They sold out their own front line by suggesting 'it's how some delivered it' as the straw man (like of course the BPS psychs, I think* Sharpe in particular? did)

and the alternative of giving correct 'new style' care to me/cfs will ruin the kingdom for those who run them so the charities are kidding themselves that any of them see it as in their interest to change.

What the bps/bacme have needed to do is to delay and prevaricate the key point to be made so they are closed down on the basis all the research their kingdom is based on was debunked. Whilst they simply ‘generalise’ the condition to slide our funding away.

Until the window for demanding a funding switch to develop / commission a new me/cfs specific resource has gone. And I think we all have ideas on if we were going down that route of 'start from scratch' we'd be asking for/might be the first thing.

we can't ask for it 10yrs after the guideline came out! I haven't seen a more 'ripe' time as far as where things are with press shedding some light on things and election and so on, to focus on that one - which is perhaps a different/new thread.

 

I have to always remind myself the b in BACME is supposedly ‘British’ because I always assume it’s ‘behaviourist’

there’s no behavioural cajoling out of the energy envelope problem

BUT No one would/should expect turkeys to vote for xmas

That's why they get so puzzled when we think they will start seeking methods that will measure things their area doesn't do. I think we have to stop being surprised, and see there are obviously limits from BACME - if you look at the board - as to how far they will go. In way it is like people who tell you they won't change and then say you are out of order for getting annoyed with 'who they are'.

We are at a difficult point where its realising that changing people who it isn't in their interests is going to be the least likely to happen aspect of it all. And it isn't going to change to be 'in their interests' or for some of the lower downs or newbies to be interested unless we work on changing that balance instead of being distracted suggesting the issue is something to do with them not trusting patients (!).

so why are we trying to be convinced there is a compromise that can work for both us and them? And apparently it not being signed off is some patient attitude oroblem is the biggest priming line I’ve ever heard from someone who is just desperate to get some useful idiot to pretend those who pretended they couldn’t see whilst they hurt patients for a decade should be the ones deciding how much they changed and what that compromise is.

the issue we have to remember is : any patient organisation or individual who does sign this off, or provide that claim of 'patient backing' instead of giving that elsewhere and providing critique - because BACME can’t claim anything other than it being imposed on patients without that useful idiot - will this time around hold as much responsibility probably more than BACME (who will say xxx said it was ok - how were we to know it wasn’t perfect given they are a patient org telling us it’s fine/good enough/safe/a fair paradigm) for harm done

because without them it couldn’t have happened. Patients wouldn't have filled in surveys without the badge of 'trust' from MEA for example. BACME can say they 'just were who they were' but it would be the other organisation that gave them permission and that green light.

Big difference in future between what said organisation can say regarding a clinic being run badly when it has been imposed, and what said patient organisation can do regarding change and protecting patients if it is the very gopher who gave that veil of authorisation for it to be them in charge and not someone else.

whether they were the vehicle fir distribution of something or patients doing or filling something based on resssurance it wasn’t going to be used fir things that weren’t good etc.

So they need to be very careful indeed in picking who they do this for and what they do it fir based on a lot stronger leash

ie their sign off comes with a lot more I don’t want to use the term being dragged into culpability , but being ‘made part of it’ in carrying cans or whatnot (so the sun fir those they do it fir is they can’t then easily criticise it because they’ve become part of it so have to defend it) this time vs before that new guidelines.

They are being dragged into a 'being in it together' situation with these people, under being told they somehow already are or are the only way forward and lots of other things I imagine 'lots' that overloads the brain so much its hard to see the wood for the trees. then you've got them managing to split patients (by some still trusting that org, but others calling it) and all the rest. WHich isn't where things are at currently.

There is no need to walk into this one, they aren't 'back there' anymore and don't need to get fooled into recreating it inadvertently, what is needed is for them all to try and get as close to the lowest common denominator patient position and not compromise it under some fake belief these people 'offer the only way'.

has this been flagged to them?

 

Moved post

I've just found the following: Info-Guide-2-Care-and-support-planning-for-personal-health-budgets.pdf (peoplehub.org.uk)

there might be others that are good and worth putting on here or the other thread, as this one focusing on the personalised health budgets, but is a useful document about how to put together the plans for those.

Maybe there are some good partners - for example material from the 25% group, other severe-specific organisations for content relating to those more severe as well as the Nice guideline and maybe patient experts who have been at different levels - who might be good to put together to work up some of the more needed 'building blocks' that might be needed for plans, particularly for the medical type info.

This has just made me realise how far-off and inappropriate the BACME-type clinics are. And the mindset of those running it/what they tend to produce. Traumatising those who have been harmed by weaponising of pseudo mental health stuff being embedded all the way through things.

You can't 'stick' assumed needs onto people and some random's ideas of who they are and what they need, that's just hiding the old orthodoxy under pretending it is 'good intentions/because you care' but I think we need to put an end to us having to be polite in response to that given we are the ones harmed by it, not them.

 

About the discussion whether physiotherapists are needed for ME/CFS care.

Agree that mostly not.

But there are certain cases where I think they could be helpful, e.g. if you get better after having been bedbound for a very long time. Not to be confused with the enthusiasm of getting very severely ill people out of bed, but helping if they improved due to fluctuation, recovery after a crash, better nutrition, whatever.

In addition, if pwME/CFS happen to need a physiotherapist for issues unrelated to ME/CFS, it's very helpful if the therapists know about limitations the illness puts to being able to exercise, especially PEM and that you cannot exercise that away/ just need get used to pain / stiffness/ exhaustion that people usually experience if they exercise after an injury, surgery, stroke etc.

So physiotherapists need to be educated on ME/CFS, too.