Social prescribing is another myth - housebound people cant really join arts club, physical exercise or whatever. Connecting you to community groups - Ive only ever had negative experiences of self-organised patient type initiatives, I’m afraid. MLM, black market drugs, illegal drugs, stalkerish behaviour….not on my social media thanks. That’s apart from them trying to “get you out” and having you walking, going to chair yoga etc.
In fact I’d really like someone to challenge the Social Prescibing champion on how pwME are catered for and how they’re protected from harms.
It’s the usual issue of a position created as an excuse that it ‘Will cover these most serious things’ but then the reality not at all checking supply is led by urgency/seriousness or even ‘need’ and what helps.
So funding needed for eg hospital patients to be advocated for or the most severe to be helped to access basic support services being set up ends up with a box tick of referral to something that finds a dead end to signpost to, but has ticked the box of ‘having tried’ because they are not required to report that there are 25choirs but nothing for what is ‘seriously needed’
no one is being required to do a thing when they see and realise ‘oh fir me/cfs, we don’t cover that’ other than to have triaged someone with ME into that anyone so they end up cup de sac out but at least ‘off the plate’ of eg the GP ‘because they are now under social prescriber’
I think chucking us under people who can offer nothing, even if they wanted to go above and beyond other than remove us from the list of those who could raise the flag or actually do something, but are told only ‘for those deemed worthy’ is how the dirty work is being done.
it’s heartbreaking going through each channel to find ‘oh it’s a come up dry for me again’ and to realise the person who ‘helped you find it’ to also get yo that point isn’t writing back up the chain or even paying testimony to how unusual that is.
the existence of crap clinics is used to allow GPs to say ‘we don’t offer medical care because usually - fir any other condition- there would be check ups and services and medication suggestions from that specialist , as well as the funding from that clinic covering specialist support services’
and the crap clinic staffs’ view very severe people who they’ve never seen don’t need all this additional stuff - how do they fill in all these forms for example or get a referral if on their own and can’t travel to an appointment or even call to ask for one - influences whether anyone thinks they need to be catered for or ‘doubted’ etc
it seems of recent times too a sense of increasing policy people are being sold the idea even young very severe should be left to die , and it’s not even misinformation but I think conscious choice of ‘because we will not be back productive within a short enough timespan’
I think the old cfs-CBT was about gaslighting is that our big issue was that we wouldn’t accept being treated bigoted ly was what we deserve and to realise it. I actually think this ‘embeddded’ new beliefs is even worse and to a new level - that we must understand’people have decided they don’t want to do things things for you’ and accept that is our fate and it’s correct etc
but it’s happened behind the scenes or in these peoples minds over the last few years alone
and is now getting spread outwards to population just like the old bigotry of the tropey old 2007 flase beliefs stuff took about ten years for the general public to move from thinking it was so preposterous that was what a guideline said ‘we must have misunderstood or be paranoid’ to suddenly overnight so many going straight from that to ‘believing it’. Both of which making us mad, but for opposite reasons.
now we are mad for ever having expected any care even if made so sick we need care that would be life-saving and is generic ie other people in similar situations but with different causes
