Thread by @_Lucibee

A summary to the @actionforme report into the implementation of NICE guidance on ME/CFS (NG206) is here: actionforme.org.uk/news/foi-repor…

I have thoughts... 🧵

My first thought is that asking an NHS trust whether they have implemented NICE guidance on a particular topic doesn't tell you very much.
It doesn't tell you *how* they might have implemented it, or that an affirmative answer means total compliance.
#ImplementNICEmecfs

There also seem to be assumptions made about what implementation means on both the part of the trusts and @actionforme
Let's take a look at question 1:
Has [NHS trust] implemented NG206?

25 trusts answered "yes", but @actionforme say 25 "services" said they had implemented NG206.
Is that because they reply was received from the ME/CFS service itself, or was the assumption made that the trust had a service if they answered affirmatively?

This concerns me because NG206 makes reference to *all* care that a pwME might receive in an NHS hospital/facility, not just within an ME service.
Therefore implementation of guidance should be across all services provided by the trust.

NG206 has sections on how ppl w/ severe/very severe ME should be cared for in hospital under any/all circumstances; safeguarding of children/vulnerable adults w/ ME; primary care review (care/support plans) etc, which apply to all trusts, whether they have an ME service or not.

Therefore, all trusts should be implementing NG206.

Maybe a better question here would have been:
"Does [NHS trust] have policies/procedures for the care and consideration of pwME (particularly those with severe or very severe ME)? If so, please provide a brief description."

But I guess if 37 trusts really did respond saying that the question was not relevant to them because they didn't have an ME/CFS service, I guess that answers the question of whether they have even read and considered the guidance.
Shockingly poor indeed! @actionforme

@actionforme Q1a asks: If NG206 has not been implemented, what is the timetable and deadline?
That 85 trusts responded to say that the guidance wasn't relevant to them, indicates again that they have not even read it.

@actionforme Q2 asks: How many patients with a diagnosis
of ME/CFS are receiving care from [NHS Trust]?

But does that mean care for anything within the trust? Or just those receiving care as part of the ME service?

It would be interesting to know how many trusts keep a note of an ME/CFS diagnosis for reference outside the ME service itself, so that those pts can receive appropriate care and consideration across the trust.
But again, the nos of NAs says it all. 😣

Q3 is the first question that asks specifically about something that is provided by an ME/CFS service - the care and support plan.
Yet only 1 in 5 pts mentioned in answer to the previous question were accounted for.

Q4 asks: What training has been provided
by [NHS Trust] for healthcare professionals on the
implementation of NG206?

A massive 88% answered that it was not applicable. 😲

This is super concerning, given the earlier point about how pwME are potentially affected by the care they receive across all services in an NHS trust.

https://twitter.com/_Lucibee/status/1663568359026466819

Q5 asks about information provided on websites.

I found this question confusing as to what it was asking, as NG206 doesn't specifically make this recommendation.

Is it in reference to the changes in guidance?

afaik it's ultimately up to a service as to how it communicates that sort of information.
There are 1000s of bits of NICE guidance, that change weekly. Keeping track of that across an organisation is not usually done centrally.

However, in this case, it clearly is important that this information is disseminated across the whole trust, and the ME service is probably best placed to do it.
But, again, we shouldn't assume that orgs work in the way we necessarily want or need them to.
Unfortunately.

Anyway...
Full report is here: actionforme.org.uk/uploads/images…
NG206 is here: nice.org.uk/guidance/ng206