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

I saw the funding for the role when reading their accounts. I think it’s been and gone.

 

I read a story about an Australian TV presenter who died from Motor Neurone Disease recently. She couldn’t digest food and rather than pursue further hospital treatment she decided to take palliative care.

It struck me that there are similarities to Maeve’s situation. The difference is that Maeve wasn’t definitely dying. (Well, and she didn’t get proper palliative care) so it does seem to be a defined disease “pathway” (in other illnesses) that the patient would die anyway, so they can decide to go home and just not eat.

I can’t remember which website I read the story on, but here is the Guardian https://www.theguardian.com/tv-and-...-wombat-host-dies-aged-67-after-mnd-diagnosis

 

I’m remembering the “There is a way” text to Gillian Leng, suggesting she kept the new NICE gl recommendations but tampered with the evidence review. The new way seems to be to ignore the guideline (because it’s only advisory, not mandatory) and carry on as before.

 

I see it as more complex and as much cock-up as conspiracy.
The multidisciplinary team aspect is in the Guideline, as Nightsong points out.
And of course NICE also says it does not prescribe delivery structure.

 

Also, let's keep BACME at the centre of what we produce, because they're all good chaps, have been doing this for years and we are looking forward.

 

I have a real issue with this

I don’t have the terms right now but don’t know why it isn’t talked about in the scandals terms of the abusive remove all rights deliberately rewrite their history with rumours of their personality take advantage of their fragility abuse of vulnerable people issue that it is. We can’t continue to have the same problem people as before and those who still think a deaf ear [if/as doing it right takes longer so is irritating] is ‘ok’ left to carry on with the same deaf ear approach.

What’s it all been for? The last years? Really the scandal of it all in a right world should have meant a clear out and come to Jesus as a never again and how can we put it right to at least not re trigger by doing insensitive things due to their past harms they did then not having an approach where they are careful again to this time care and make sure they aren’t callous about harm (and so that becomes one of their main measures).

That underlying bit never became the focus even if it would be implicit to every lay person. What is wrong with these professions. It’s like worrying about the spelling whilst writing something legally inaccurate or being poetic whilst churning out another recipe you haven’t checked actually is disgusting when someone at home follows it.

What do they think is the actual main thing of what they do as a job because the word ‘help’ should be banned from what they are allowed to say. And care. And end result not being to make people more disabled than necessary either thru ‘dunnoism’ or denialism if you don't have to actually check for it.

that it has never been countenanced as a discussion that they should apologise, be contrite, and be different in their approach to us makes it even more violating as so many of them have even silenced allowing people to not even talk about what it really was like to be on the receiving end and what consequences it would have but they don't even acknowledge it in ‘positive going forward terms’ in as far as the protections we need and then ‘needing to learn x’ or hear us.

The catastrophisation attacks really felt like I was being abused by the same people who did the harm in the first place, and were terrifying and underlines how inappropriate just keeping plopping the power with them rather than hiring them back on conditions has created as a situation that should never ever happen from a plain justice and safeguarding point of view. And I don't get it, because they don't have 'expertise' to offer, because that all turned out to be harmful tosh so the 'no learning ear' squirrel away and come up with a new nonsense is frankly a disturbing example of the same ignorance and bad habit. They've not heard the lessons, any of them. NO penny-drop

the silencing attitude and people need to be driven out of being anywhere near us - as the group having been made vulnerable and injured by them and therefore even more vulnerable to that coercion and it being a real sitting duck disgusting situation

even objectively I’m horrified the world still puts people back with that attitude even worse and more indignant as if they are the victims of ‘hassle’ created by us daring to ‘show our face as being harmed to show them up’ on top of they shouldn’t be allowed back in the first place and the falling straight back into bullying us into ‘can’t make us not do the same old' (and call it a new name or just a tweaked rebrand) is just gob smacking that they did as a boundary test and watched as no one backed us up.

no I don’t want paternalists who want to shut me and my body up writing who I am and dictating my rights and if I have a future. Who really aren't curious for new scientific information, nevermind getting to the bottom of any medical problems to make our disability less and finding out what they can in the mean time to support and work with us. They just aren't that. That phrase to them in their mind means something completely different (motivating us to do their same one-dimensional, can't get it through their heads you don't get to try it 2,000 times and then it will work in a way they think is individual but is just coercing the person in front of them).

and after all these years of course it’s my time when not only should I be allowed to say it but we, like the post office sub-postmasters, should be the only ones being given an ear - not the smooth spieling self deluded perpetrators, or next-men-down who were convinced of it, who had the mic for all those years - and in these situations the power operates the same. those who are dyed in the wool and have chosen a behavioural niche will never change and can’t even change their MO from attacking with veiled nonsense, which is what all the weaponise fake anti-mental health done by physios with no qualms, regs or any reason to be entitling themselves is being used. I find it all so appalling.

There may be those in the middle who might have it in them to learn but cant whilst this clear out process doesn’t happen because of the power differential and selling of delusions they have to learn off by heart to keep their place.

 

https://www.thetimes.com/uk/healthc...n-to-prevent-further-deaths-from-me-l7pjrrdg9

Archive link: https://archive.ph/oPH38

The Times online today Mon 7th October, posted 12 noon.
Edited in: new is written in red underneath the familiar photo of Sean and Maeve

"The health secretary and NHS officials must urgently address the “non-existent” care available to ME sufferers and the lack of funding for research into the condition or risk more deaths like that of Maeve Boothby O’Neill, a major report has found.

In a watershed moment, the coroner in Boothby O’Neill’s inquest issued a prevention of future deaths report on Monday, the first of its kind involving the poorly understood condition of myalgic encephalomyelitis.

Deborah Archer, who concluded in the summer that Boothby O’Neill, 27, died of malnutrition as a result of ME, has called on Wes Streeting, NHS officials and other health bodies to take urgent action.


She wrote in a Regulation 28 report: “During the course of the inquest the evidence revealed matters giving rise to concern. In my opinion there is a risk that future deaths could occur unless action is taken.”

Boothby O’Neill’s death in October 2021 has become a landmark case highlighting misunderstandings of ME, also known as chronic fatigue syndrome, and the lack of treatment available for severe sufferers."

Edit: Link above "to take urgent action". Link to earlier article on Coroner's inquest on 27 th Sept.

Coroner to call for specialist ME services after Boothby O’Neill death
Maeve Boothby O’Neill’s case highlighted an inability to care for patients who suffer with myalgic encephalomyelitis, or chronic fatigue syndrome.

 

Can’t find the report itself on the coroner’s website

 

There is also an article in the Guardian:

https://www.theguardian.com/society...r-risk-further-deaths-uk-health-minister-told

 

It may be worth looking at the archive link https://archive.ph/oPH38- thank you @JohnTheJack which seems to have a bit more content including a section it calls
The Times view on the chronic fatigue syndrome inquest: Respect ME

"Sean O’Neill said that that hearing revealed a “shameful” lack of action at senior levels to address ME, given that three years after Boothby O’Neill’s death there were still no beds anywhere in the country set aside for the treatment of a severely ill patient.
Senior officials at the Royal Devon have stressed to NHS bosses the need for action but have been told that there is “no active work” to introduce specialist services.
It comes despite repeated pledges by the government to do more for ME patients. Gwynne, the minister for public health and prevention, said after Archer’s ruling in August that Boothby O’Neill “fell through the cracks” and he pledged to boost research, improve attitudes and “better the lives of people with this debilitating disease”."


Once again the name issue comes up. ME and chronic fatigue syndrome are being used interchangeably. We really need to sort this out.



edit: the article has been revised since I wrote this. Cannot keep up!!

 

Considerable coverage again:
Telegraph - https://www.telegraph.co.uk/news/20...y-oneill-myalgic-encephalomyelitis-death-nhs/
Mail - https://www.dailymail.co.uk/news/ar...-young-woman-died-debilitating-tragedies.html
BBC Devon - https://www.bbc.com/news/articles/ce81g8e33lro

Quoting from the DM article:

 

The Department of Health Spokesperson notes:
“We are committed to improving the care and support for all those affected, and we intend to publish a Final Delivery Plan this winter which will focus on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease.”

Nothing was decided about boosting research as far as I know. The funding bodies (MRC, NIHR) pretty much kept mum. The attitudes and education aspect we have on another thread. We seem to be going nowhere fast at present.

I also note that the coroner thought the NICE 2021 guideline for severe ME/CFS was not specific enough about feeding support. I don't know where that came from. From what I have seen the general guidance on feeding support for adults is adequate. The problem is that there is a deliberate resistance to supporting those who are not deranged enough to section and don't have structural GI failure. If there is anything else to be said why is nobody saying it - other than maybe me?

 

'A sad day ... a big event in the dreadful statutory processes .. a sad sad day that this is what the UK NHS is for those with severe and very severe. And for this poor family. And all the families harmed by the health services......' ME Advocate
Reg 28
Short, sharp and to the point ...

 

Thanks for that @Suffolkres.

 

For 2 years post NICE 2021 release, things were going swimmingly well in Sunny Suffolk and NE Essex SNEEICS shiny newly embedded ICB.
As of July 2021, questions were posed,
*questions were answered,
*ICB Board pinned down- before, during and after ICB ratification
- and medical directors duly challenged on confusion over ME/CFS being aligned with FND, dissociative disorder, MUS, (as were Public Health, 'Knowledge and Intelligence'......Thanks to Charles Shepherd zoom presence , intervention at a critical meeting - face to face for us!

Great, great, great Transformation manager Nurse Specialist, leading service development under formal ICB governance......
Terms of Reference, Task & Finish, Coproduction....
believing , responding.. GETting it. Excuse the pun!

ME finally embedded as a Priority LTC Health Inequality and unmet need in ICB 5 year Forward Plan..( details available)....

Sorted, except for 3 Local less enthusiastic Alliances .....who have their own priorities...... not necessarily aligned with ICB.......

Savid/o'Neill 2022 DoH Delivery Plan debate and invitations for us to take part.

SNEEICB invited, former consultant lead specialist services medical lead for SA ME, Luis Nacul invited..... looking promising......

Our Task and Finish model service, spec and pathway; Jo Edwards invited to contribute..Nigel Speight as well.... Social Care covered well by great Tymes Trust supporter.....thanks Tony!

Healthwatch engaged.

All boxes ticked....

So, What could possibly go wrong in SNEEICB?

Part 2 later!......

 

Have been, otherwise engaged in Suffolk for a while.
Personal difficulties re family health, husband 2 yrs of cancer treatments (faultless I am relieved to say).

Plus all manner of nonsense re local Planning enforcement, breaches of conditions, lack of compliance and criminal acts potentially , by neighbour, diverting my attention.....from S4ME.

 

Let me guess. Budget cuts, cuts to coproduction budgets, redundancies, everyone off sick or musical chairs for the rest of the staff so no continuity, priorities changed, urgent care programmes take priority, funding sucked into the bottom line to offset deficits, you haven’t spent your money at the moments notice we gave you so we’re taking it back, new person in charge doesn’t like the direction, there’s a split/merger/new collaborative that changes everything?

 

All of above!

 

I've just popped in from a six month absence due to severe PEM to let you all know that I have written to my MP. Wasn't sure where to post it, as it covers the missing report summarising the responses from the My Reality consultation a year ago, the Coroner's Regulation 28 Prevention of future deaths report and questions to be raised on my behalf to the Secretary of State for Health in the House of Commons. So I decided to post it in this thread out of respect for Maeve Boothby-O'Neill.

Here is the content of my letter to my MP mailed this evening: