Maeve Boothby O'Neill - articles about her life, death and inquest

Sorry Dave, it’s the final delivery plan now, not the interim one, I guess Andrew wrote the letter so long ago that it’s changed since?

 

Thanks @dave30th. Have you seen the response from the Medical Schools Council?

edit: I googled and found this; not a response to the Coroner ( dated May) but a sort of commitment.

"The Medical Schools Council will promote shared learning and the NHS England e-learning package on ME/CFS to all UK medical schools, and encourage medical schools to provide undergraduates with direct patient experience of ME/CFS .21 May 2024".
As patients, we would need to be involved with this. Anyone know anything about it?

 

So - all those years and all that work by all those people - and what we have to show for it is the grossly substandard NHS England e-learning package written by a non ME expert.

 

Yes, I have five of the responses. I'll post them later today.

 

That would be great. Thank you. Will be interesting to see their responses.

 

I would if I knew how, will look into it but what would be better? I often put too much on. Now looking at the released the cross-government plan just released. I think I could work on showing how they confuse the words on there using the slides. Just sitting down to tweet this so here goes my plans for today

 

Responses from NICE, NHS England, DHSC & NIHR, Medical Research Council and the Medical Schools Council have been posted:

https://www.judiciary.uk/prevention...by-oneill-prevention-of-future-deaths-report/

Direct links: NICE | NHS England | DHSC & NIHR | MRC | MSC

 

From the DHSC response, referencing the e-learning modules:

MRC said that:

I wasn't aware of that. Anyone know anything more about this engagement?

The Medical Schools Council "asked medical schools to send me some examples of how they teach this important area", and shared three responses. The first medical school's response demonstrates that the respondent is part of the problem, referencing "biopsychosocial interventions":

The second medical school's response was also underwhelming:

The MSC did, however, copy in the Academy of Medical Royal Colleges and the GMC (which I was surprised the coroner omitted).

NICE has committed to:

and seem to be interested in developing an update to the NICE CKS:

Interesting elements of the NHS England response:

and:

 

It is a pity that the Royal College of Physicians was not asked to respond. The responses so far fail to confront the deliberate attempt to marginalise ME/CFS as neither a structural GI problem nor a psychiatric problem.

 

Yes but I am not in a position to give specifics. It is a reality.


The recent policy document from Devon and Exeter on care of severe ME/CFS in hospital appears to be a cop out.

 

I was particularly surprised at this part of the response from NICE:

Not that I know much about NICE's internal processes, but I was under the impression that if they re-opened the guideline, that would necessarily involve a formal process with the whole gamut of consultations and workshops and notices and comments and testimonies and calls for evidence and impact assessments: I didn't think there was a way of simply opening a guideline up for an edit on one subject. There is clearly a move towards "living guidelines" but it is not as if there is much in the way of ME/CFS specific evidence.

Presumably their evidence review will turn up nothing much beyond the Speight et al case series and they will decide against making changes?

The MSC's responses suggest that medical education related advocacy efforts should be a high priority.

Thanks. Another non-public effort, though? This is not at all aimed at you - quite the opposite - but perhaps the thing that annoys me most is that so much relating to pwME is done in secret: everything about us without us, or with the involvement of a few "patient representatives" who push themselves to the fore & often do not know what it is they are talking about at all. The whole DHSC process has been highly opaque and looks like it will be a complete muddle. There needs to be proper, broader, engagement.

 

But as I mentioned earlier, NICE's hierarchy of evidence doesn't rule out non-RCT evidence, and includes:

And the fact that PwME have been dying should (in any sane world) mean that a sane set of guidelines should be introduced, now that attention will be focused on it, even in the absence of RCT evidence.

 

NHS England responded with the most absurd take:

They literally rejected the entire guideline, and the response completely glosses over it. Ridiculous. And so continues the problem here being that facts are completely irrelevant, everyone just picks and chooses whatever they want the facts to have been retroactively and ignores the rest. No one takes responsibility here for decisions they made very clear.

Aside from NICE. Not much to say there, and they are apolitical so won't voice any criticism where it's needed.

The Medical Schools Council responds with the even more absurd take, that some medical students are being taught the wrong model:

Bunch of lazy fakes in a system rotten from the inside out.

 

Given the response from the Medical School Council, it's the GMC that needs to respond, as only they can compel things, unlike the colleges which are just professional associations. But like everyone in the system, they're content with just passing responsibility to places where no one is responsible for anything.

 

I think now’s the moment for the regular reminder to ourselves that NHS England is the government. As a sub under Department of Health and Social Care. So, just an extra way to be told to go shove it when calling for improvements and resources, rather than a body with a reason to actually help the NHS achieve better outcomes for all.

It’s not like some group of geniuses and good hearted medical practitioners ‘the best of the best’ getting together to ensure the health of the nation.

But still all this considered this reply from a them is, whilst true to form, also astoundingly awful.

 

"The brain fog of war"

 

Hi, sorry I didn't post them earlier, as I'd said. After I wrote that, I was asked to wait until they were actually posted publicly.

 

wonderful phrase!

 

That's fine @dave30th. It's not as if they're going to change everything is it? How can so many words be written and things stay the same?

Merry Xmas!

 

Isn’t Wessley literally on the board too?