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

Yes, but she seems to be referring to the NHS clinicians at the time of Maeve's death being unable to act (Those who do work in the NHS did not have the authority to change national clinical guidance until after Maeve died) because of some guideline - presumably 2007, although I suspect there is nothing in it on feeding. The suggestion is that the death was preventable in theory but that NHS clinicians were unable to act appropriately.

It is a pity that the debate in the public domain is so far removed from what the real problem is - the resistance amongst gastroenterologists and physicians in general to taking responsibility for ME/CFS patients and providing the same can as others get.

 

https://meglobalchronicle.wordpress.com/2024/09/06/news-about-children-with-me-in-the-uk/

Extract - seems to be attributed to Drs Speight and Weir

Firstly, in nearly every case the management of each case has in our opinion been markedly suboptimal, especially by the clinicians in their local hospitals. We will attempt to describe common deficiencies shortly, but before we do it is worth mentioning two relevant points.

1) Once I (NS) gave a talk to the nursing staff on our paediatric ward to prepare them for the imminent admission of a very severe case. When I had finished one of our staff nurses said “So what you are saying is, everything in our previous training as nurses is wrong for this condition”. I warmly agreed with the truth of her observation. Subsequently I realised that it could have been applied with equal relevance to doctors, psychiatrists, physiotherapists and others

2) I have often observed that “Those doctors whom God wishes to drive mad, he first confronts with a patient with ME” Our experience with very severe ME has led me to add to this by saying “Those that have not yet gone mad, God then confronts with a case of very severe ME and this usually does the trick”

 

This also appeared as one of the leading articles in the print edition (p25) of today's Times:

 

Do you know who wrote that?

 

It was a Times leading article, so unsigned. Full page attached.

 

Letter in yesterday’s Times from Ilora Finlay & Peter Barry: https://www.thetimes.com/article/88...b?shareToken=52a475cd932e0c54aa5ded71240f6c5c

Letter in today’s Times from Charles Shepherd: https://www.thetimes.com/article/ec...f?shareToken=427b8c1c16be57c3152f615c036579bc

 

Thank you for doing this – and much more such as your Qeios piece – your dedicated advocacy gives me hope!

 

I wanted to comment on the stat that we’ve heard in the inquest about the hospital seeing around 5 very severe ME cases per year. I’m sure that’s true but it concerns me that people hearing that will conclude that there’s such little demand for specialist services for severe and very severe patients that funding it isn’t a priority. I fear they won’t understand that the stat masks how many severe and very severe pwME nationwide desperately need the same help but feel they are safer not requesting it (I wonder what that number is?)

I’m concerned that it will take years before we can safely ask for the help we need. If Maeve had been able to request informed, unpredjudiced help earlier, would she have starved to death? How many more people will reach the same fate because they need help now but don’t feel it’s safe to ask for it? (Personally, I worry I could be one of them.)

I hope the Section 28 notice can bring some desperately needed progress.

 

Absolutely @RainbowCloud everything you say. X

 

For reference that's in the ballpark of our national annual child cardiac transplant numbers (liver transplants probably a few more). And those services are most definitely funded. It's a matter of political will.

 

That is just one hospital though. And 5 was an average, I think they said they had actually seen 7 in the past year?
And there are 42 Integrated care boards in England, so if each has 7 patients 7 x 42 = 293. Just in England.

 

Yes.

I feel five is plenty enough. More than I would have expected perhaps. Also if it were fewer than this, it still remains the case that every patient is a person worth caring for. Ethics first.

Strategy second. This is one decent way medicine can evolve and develop skills which will be transferable, other patients will benefit from less noise and light and having their individual needs considered.

Still I do think it can be a problem to look at the numbers of presenting patients in these situations as a way to measure the scale of the situation.

People need family support to get as far as a hospital bed whilst very sick with ME. We don’t know how many people suffer like this without support behind them and are diverted into psychiatric pathways and may suicide before reaching the feeding tube stage.

Or suffer medical prejudices and abuse early on in course of illness, avoid healthcare altogether. May take their own lives when it becomes obvious a physically punishing hospital environment and the psychological trauma of being treated like an unwanted object by the staff you will be utterly dependent upon to stay alive is a growing risk.

We’d all hope for good care. Hospitals and community medical services do give good care sometimes. Yet we often learn to stop expecting the best early on.

 

Thanks so much @Robert 1973

"...the coroner finds the situation so serious that she is preparing a section 28 prevention of future deaths report, the delivery plan must include an audit of all health trusts to discover if they are following Nice recommendations for the care of people with severe and very severe ME/CFS, and what they intend to do if they are not."
from Charles S

Spot on Charles and as a bare minimum. How do we press for this and with whom?

 

The MEA employed a person on a Fixed Term to look at NICE implementation and liaise with the NHS trusts to get it implemented, so they really know what they’re talking about. The MeA have really been pushing for implementation and I don’t think they’ve got very far.

 

Do we know what the MEA have been pushing for though?

We now seem to have a government working party produced e-learning module painting a picture of carrying on as before with GPs physios and psychologists.

 

I thought similar when I saw that stat. I don’t know how narrowed down that is too given lots might be misdiagnosed and it certainly seems feeding issues might involve either dumping into a functional box, mental health or sending away. And some might never have come back (gone elsewhere ).

It seemed awfully specific to state that number without confirming where it was from and how it was calculated but certainly seemed to be being used to infer ‘not enough to plan a service’.

which confused me because even two is enough to make sure gastro gets it right with feeding tubes instead of what happened and it seems other conditions just have guidelines rather than their own gastro staff?

and if it’s a specialist service for severe ME then things that stop people deteriorating and other things that might help being tried or other conditions contributing (because we often don’t get treated for those due to bias or not being then able to access care and eg an infection and other ‘small’ issues don’t help) and so on … well then there will be far more than five severe and very severe - I assume that figure is the number needing their ‘first’ tube?

 

Did that happen? Is one person enough to go up against all that? Of course not so I assume the role was more defined than that in some way? Do we know how long the fixed term was for?

 

Yes basically dying under a different label where it gets called suicide or even death by a different label (if they call it an earring disorder) but really it’s more complex than that and calling it that.

I remember watching I think it was the end of the first episode of the Miriam margolyes being an Australian programme. It had a historical event to do with aboriginal and Torres straight people being on pasture land by coast just going about their lives (can’t remember but chilling basically, not a riot) and an army coming and driving them off the cliff to their deaths. Then that cliff being named ‘suicide point’

 

The MEA was monitoring such as job adverts and information put out from specialist services, contacting the relevant trusts when they identified contradictions with the new NICE guidelines. Presumably this was part of this role.

I think this did help, at least superficially, in that services seemed to get better at least wording material so it did not obviously contradict the new guidelines. However this does not always ensure understanding, rather just creating a new set of euphemisms.