The ELAROS NHS digital system for patient/clinician digital sharing questionnaire data, includes Yorkshire Rehab. Scale and Open-OH app

Amw66 said:
Is this shenanigans, together with the BACME guide a taster of the MEA when Charles retires fully ?
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I'm not sure they've even bothered to wait for Charles to take a back seat, they seem to be steamrollering ahead regardless. I wouldn't blame him if he decided he's had enough of trying to be the voice of reason and balance, or the one person who reads and responds to individuals' concerns on social media.

I don't know what the MEA think they're going to achieve for people by going down this track. Why aren't they arguing that apps are not only unproven (and staggeringly tiresome) management tools, they're a wholly unacceptable offer in the context of ME/CFS? That there's a list of basic healthcare services that are not made accessible or even offered at all, and why aren't real, serious issues like that being addressed instead of insulting people with phone apps?
 
I feel like they have given up. The only way they have a “seat at the table” is by getting involved with this low grade junk. It’s like they just got tired of there being no progress so they’ve gone “well, this will do, at least it’s “something” kind of like PROMs in a way “well if we do this, we can measure our success and show we’re adding value” ok, but it’s junk. It’s not helpful, nobody wants it and it’s adding to our burden. Why do we have to always make other people feel better about themselves?
 
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