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

Jerkie:
H: I've had to try different avenues to initiate movement. (ref to lack of national level contact & engagement) SBO: Are you surprised [by the] lack of engagement from national level? H: I'd rather not answer.

Steve Fifield:
Coroner / Sean O’Neill Q&A: Should Coroner be writing to NICE regarding guidance for severe or very severe. Not much guidance for practitioners? [AH: National body to provide guidance when evidence available. Should be able to state evidence or recommendations]

MEAI:
SB: there’s not much guidance for practitioners in NICE
Coroner agrees
Dr H: NICE is a national body with clear remit for guidance, mandatory in some forms, guidance in others Dept of Health & Social Care would be bodies to go to, don’t dilute
 
Coroner 'I am intending to write a Section 28 report to Trust/Dept Health? plus NICE plus other bodies'

Not sure if I heard this right. She expected the Trust to have written a Policy document and she is going to invite them to write one

Reply - this would be a flow document of what has been described. Within 28 days

Coroner - should include training. When will it take place and by whom. Will give them 56 days

Document of public record - Section 28
 
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MEAI:
Coroner says SO’N has a great deal of influence if he has other suggestions of who to write to He has already suggested the Health sec but she has no power but can bring the concerns raised to the Gov’s attention She could copy in any of the bodies that wud find use

Screen Shot 2024-09-28 at 12.12.55 am.png
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Edit to add: Graphic from a tweet by Sir Dame EleanorF #MEowner
@EleanorSews
 
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MEAI:
Mr Launds doesn’t have questions

Coroner says she will write a reg 28 report to the Trust

She says SB is quite right when she says people will move around, move on, that she was expecting a policy doc that would give a pathway if someone came through the door


Jerkie:
SB quite right people move on. Was expecting a pathway for patient for ME. What happens if ppl/staff there now leave RD&E?
 
Paul Keeble:
Trust lawyer. Task to finish community care piece still ongoing. On policy a flow chart. A trust could provide an update in 28 days, not a policy but which post holders are responsible for what.

Lucibee:
Fairly concerning that a senior clinician doesn't know that only NICE Technical Appraisals are mandatory. NICE guidelines are evidence-based recommendations, and as such are not mandatory. They outline best practice.
@NICEComms

MEAI:
Coroner asks if the Trust doc could include something about training, when it takes place & to who
Dr H: the e-learning is not capable of being audited at mo but we can put something in
C gives 56 days for completion of Trust doc
 
Paul Keeble:
Coroner. Intends regulation 28 draft directed to bodies identified and copied to others appropriate. Wil be a doc of public record. Everyone can see it. A long and harrowing process. No one happy or has all the answers. Hopes this report starting a change in this.

Steve Fifield:
Coroner: Hopes that by making report will start a change. Inquest closed.

MEAI:
Coroner says all bodies identified in today’s session will be copied into her regulation 28 report which will be on public record , available for all to see, ‘a report that will start a change in this area’ C thanks everyone who attended Inquest now closed
 
Final brief impressions:

Sarah and Sean raised good points.

A Regulation 28 report will be drafted and directed to DHSC, NHS England and NICE.

It will probably be ‘cc’d to other parties including those outlined by Sean in his submission. We don’t know who those are but he mentioned the Health Sec, Medical schools council and research funding bodies like MRC.

It will be made public. No timeframe given.

At a local level I think the Coroner was concerned at a lack of pathway to ensure future RD&E patients safe. Hospital has 56 days to prepare an informal outline a clear procedure for inpatients.
 
So far I get the impression that nobody is seeing the wood for the trees.

The absence of commissioning for severe ME/CFS is irrelevant, since Maeve was indeed admitted and treated. There were probably no side rooms during Covid, and probably still aren't, but that is a problem with the general lack of hospital resources.

The key thing for me is that Maeve was treated as a 'functional' case not to be fed because of 'overmedicalisation'. That needs to be grasped and deal with. The problem is that the blockage is not with the DoH, it is with physicians belonging to the RCP. They don't want to know.
 
I appreciate the way the coroner identified that the hospital hasn’t actually formalised the approach they now say is in place into a document setting out responsibilities snd that is not future proof because individuals move on with their knowledge. Having that down on paper at least offers something that they can be held accountable to. And when made public can be presented to other hospitals as a minimum standard of what they need to do to reduce the risk of death.
 
Jason S said:
All ME patients are complex. Nutrition and feeding is a central issue. Precedent now established but this was novel with Maeve
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She wasn't the first. And there was no need for such a precedent. People shouldn't be left to starve to death in a hospital on the basis of delusional beliefs, and no health care professional should require specific guidance for this. 10 year-old is about the age where you expect someone to not need precedent of this kind to do something this monstrous.

And obviously they not only see more than 5 patients per year, most pwME simply refuse to go to a hospital knowing that they will be mistreated. This is all a consequence of decades of maligning us, something that was an active and intentional choice made by physicians and enabled by the institutions that are responsible for this ongoing disaster.

This is all a load of ass-covering with no intention of changing anything until forced. We've heard the same lies for decades, and unless there is a legal mandate they are making it clear that nothing that they say is worth a damn. Kabuki theater with no honor.
 
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Hutan said:
MEAI:
Coroner says SO’N has a great deal of influence if he has other suggestions of who to write to He has already suggested the Health sec but she has no power but can bring the concerns raised to the Gov’s attention She could copy in any of the bodies that wud find use
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screen-shot-2024-09-28-at-12-12-55-am-png.23545
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That graphic sums it well. Where is it from?
 
rvallee said:
That graphic sums it well. ?
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A good depiction of the Elephant in the room. No amount of services/care plans will make things better if the Elephant is not first removed.

Jonathan Edwards said:
So far I get the impression that nobody is seeing the wood for the trees.

The absence of commissioning for severe ME/CFS is irrelevant, since Maeve was indeed admitted and treated. There were probably no side rooms during Covid, and probably still aren't, but that is a problem with the general lack of hospital resources.

The key thing for me is that Maeve was treated as a 'functional' case not to be fed because of 'overmedicalisation'. That needs to be grasped and deal with. The problem is that the blockage is not with the DoH, it is with physicians belonging to the RCP. They don't want to know.
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We fought and got access to a Hospice, a quiet room, considerate nursing, compassionate Doctors etc but it was eating difficulties and severe ME being treated as ‘functional’ that ruled the roost and did nothing to halt my late wife’s rapid progression to death or relieve her suffering in the final part of her journey.

I still live in hope, even after decades of them not wanting ‘to know’ and access to relevant medical and other services being denied/withheld, that the elephant in the room will eventually be banished.
 
Charles Shepherd comments on the coroner's decision to issue a Regulation 28 report:

https://meassociation.org.uk/ioci

Suggesting "a small number of specialist ME/CFS centres with dedicated hospital beds":
There also needs to be immediate action by the DHSC to make sure that all health professionals and trusts are following the very clear NICE guideline recommendations on the care and management of people with very severe ME/CFS.
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This requires the preparation of clinical pathways that co-ordinate community/domiciliary care with hospital care, especially when admission for nutritional support is required.

We also need to return to the situation where there are a small number of specialist ME/CFS centres with dedicated hospital beds for the assessment and management of people with very severe ME/CFS,
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