UK: Royal Devon University Healthcare Trust: Planned and unplanned admission process for severe or very severe adult ME patients - clinical guidance

If we come up with something on care for severely ill PwME, how would we go about getting it taken up by the NHS?

 

By getting the needs enshrined in the NHS Standard Contract with careful explicit wording And key performance indicators....KPIs.

Challenge through the procurement process.
Well, in theory, that's what we were led to believe......
But what if no one competent bids for the contract?
Leave no wiggle room and keep on trying.
However, it's at best a 'cat and mouse' game at the minute trying to pin down a suitable spec and pathway.
Then there is the holding to account bit!
That's where local Health Scrutiny might need to overview and criticise!

 

I think if we can come up with something genuinely sensible at least it has a chance of impacting decision-makers unofficially - that might be charities, bits of NHS, Royal Colleges or whoever. I doubt we are going to write something and have it adopted as such. But just having a sensible statement in existence can be used as leverage by anyone on the patients' side (assuming there are some or will be some day!).

My impression is that lots of stuff on this forum gets used by others, mostly without any credit given, but that doesn't matter. What matters is that it is used.

 

What about seeking out the interest of Coroner, Debora Archer?
as she asked RDUH for a draft Pathway on the 27th September, (especially for the severely affected, very severely affected) and they, it is patently obvious, haven't, can't of won't oblige!
What about S4ME adapting one which 'we in Suffolk drafted as a proposal earlier' this year?

At least the earlier Suffolk draft has gone through due coproduction process, passed by Clinical Exec etc, within ICB and it has been notionally costed, so should/could be feasible within NHS budgets?

 

I think people don’t come up with anything properly it feels then do all the pushing hoping it will develop right but that it’s ok they campaign for some generic principle (better care) then get inveigled into trusting the same old and having them part if it and they just further embed the same or worse as they give them more mandate

the issue is clearing out these old weird add ins and the old staff and just getting something straightforward first so at least all the patients know what is being pushed for is safe

and stop palling up with people thinking this time that person or persons is different or they’ve changed etc so that it’s the same old staff allowed voice or written into the pricess that we get our lives controlled by and can’t escape from claiming know best over our voice

all this bs about we have to trust people who’ve behaved very badly to us only - and who were qualified explicitly only to do the oppposite to what is safe ie the old guideline.

rather than the norm you get from trustworthy people which is they’d never ask someone to trust them blindly anyway and would write things down and seek to make sure they’d articulated needs vs offering well . I keep hearing it over and over of people talking about trying to please and get the untrustworthy to ‘trust us’ when we are the ones harmed by them so where did that come from? And why is no one pulling them up on the rudeness tgat they should be apologising to patients and land as a start and instead weve this rude victim reversal game they are trying to play with advocates inferring wrongly patients are rude when given hiw they’ve behaved no it’s ’measured and appropriate’ and outrageous they act dangerously to us and say things that cause incredibly harm then anything people say that constitutes‘no’ is being twisted as if we aren’t allowed to speak and are rude for doing so. When actually if they won’t take the cone to Jesus head the harm you’ve done they aren’t safe to be allowed near nevermind speaking fir patients

 

Looks to me like an obvious typo, I've seen CFS mistakenly becoming CSF quite often in various documents.