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

There was an article in the Times last Thursday Jan 16th which contained a short paragraph referring to Maeve's inquest. " A Devon coroner complained: " I write a lot of these [PFD] reports and often nothing happens."

PFD = prevention of future deaths

The article entitled " Reform our failing inquest system urges sister of tragic head teacher" focuses on the death of Ruth Perry, who died by suicide after an Ofsted inspection in which the primary school of which she was Head was downgraded from 'outstanding' to 'requires improvement'.
Her sister Professor Julia Walters called for reform of the inquest system and said that " public bodies should be legally compelled to make changes when concerns were raised by coroners."( my bold)

She also drew attention to "disparities in the allocation of legal funding." Public bodies receive taxpayers' money to fund legal teams while families are often not awarded legal aid. I think this was the case at Maeve's inquest. Perry's family crowdfunded £50,000 to pay a legal team.

Public bodies were identified by the coroner in Maeve's inquest but Sean O'Neill thought their responses lacked substance. See David Tuller (@dave30th ).A requirement to make changes would have made a significant difference.

https://virology.ws/2024/12/11/trai...to-coroners-report-in-boothby-oneill-inquest/

edit: amendment of Julia Walters occupation
 
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Maat said:
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:
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The above contains the text of my complaint, the same day the Regulation 28 Prevention of Future Deaths report was issued following the Inquest into the death of Maeve Boothby O'Neill.

This following is copied from https://www.s4me.info/threads/uk-of...livery-plan-process.40610/page-10#post-585043


This is the reply I received, via my MP, from Andrew Gwynne MP, Parliamentary Under-Secretary of State for Public Health and Prevention of the Department of Health and Social Care today. It is dated 31 January 2025. Andrew Gwynne also has responsibility for long-term conditions.

My initial reaction would breach forum rules. So I will take some time to consider my response.

Here is the content of the reply from the DHSC:

Thank you for your correspondence of 21 November on behalf of your constituent xxxx about myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). I apologize for the delay in replying.


I am also sorry that xxxx has not received an update on the consultation report which was delayed, partly due to last year’s general election and the change of Government.


My deepest sympathies go out to Maeve Boothby O’Neill’s family and friends. Maeve and her family were forced to battle the disease as well as a healthcare system that repeatedly misunderstood and dismissed her.


As xxxx is aware the Department received a prevention of future deaths (PFD) report in relation to Maeve’s death. We have responded to the PFD, addressing the concerns raised by the coroner. It is important that we learn the lessons from every PFD report.


We want a society where everyone, including those with long-term conditions such as long COVID and ME/CFS, receives high-quality, compassionate care that also supports their families and carers. We will change the NHS so that it becomes not just a ‘sickness service’, but able to prevent ill health in the first place. This will help us to be better prepared for the change in the nature of disease and allow services to focus more on the management of chronic, long-term conditions, including ME/CFS.


People with ME/CFS deserve the most appropriate treatment and to be confident that the NHS can offer that treatment. I recognise that care for people with ME/CFS has varied widely, and in the worst cases has left some people feeling that their illness is not recognised by the health and care system. We know that more research, better services and a better understanding of the condition all have the potential to make a huge difference to the quality of life of people with ME/CFS.


As xxxx is also aware, the Department published the ME/CFS interim delivery plan in August 2023, alongside a public consultant that closed in October 2023. Following my appointment after the General Election, one of my key priorities was to ask officials for an update on this consultation. They informed me that the consultation had received over 3,300 responses and there were a particularly large number of qualitative questions, which meant the process of analysing the responses took longer than expected. However, on becoming the lead minister for long-term conditions, I made it a priority that this work should be sped up. A summary of responses was published on 19 December 2024.


We have reconvened the ME/CFS Task and Finish Group, which includes senior officials from the Department and across Government, ME/CFS specialists and representatives from NHS England, the National Institute for Health and Care Excellence, the devolved governments and ME/CFS charities and organisations. The consultation responses, alongside continued stakeholder engagement via the ME/CFS Task and Finish Group, will inform the development of the final delivery plan for ME/CFS, which we aim to publish by the end of March. The plan will focus on improving research, attitudes and education, and bettering the lives of people with this disease.


I hope this reply demonstrates our commitment to improving care and support for people living with ME/CFS.
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I recognise that care for people with ME/CFS has varied widely, and in the worst cases has left some people feeling that their illness is not recognised by the health and care system.
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We’re not feeling like that. It isn’t being recognised.
Idk about the rest of the reply, I’m out of the loop here.

Thank you for posting, @Maat
 
Utsikt said:
We’re not feeling like that. It isn’t being recognised.
Idk about the rest of the reply, I’m out of the loop here.

Thank you for posting, @Maat
Click to expand...

Yann04 said:
Yes the “feel like” is really patronising.

If I remember correctly Nath said ME/CFS patients “feel like” their symptoms get worse after exercise and that really annoyed me ahah.
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Not least adding that feeling we are not taken seriously is the worst that can happen, while referring to Maeve O'Neills case in the same text.
 
Utsikt said:
We’re not feeling like that. It isn’t being recognised.
Idk about the rest of the reply, I’m out of the loop here.

Thank you for posting, @Maat
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Is the term ‘meta’ correct for that exact wording chosen underlining /being a metaphor in itself for how sometimes people have been so conned into ‘polite gaslighting’ they don’t even realise that’s what they are doing.

it makes me wonder whether he is the original writer (or it’s a phrase from a reply he has received himself) because am I correct in thinking he has experienced long covid himself? If it were a letter from a person rather than position then I’d guess you’d just write ‘I recognise me/cfs but understand the actions and attitudes experienced by too many indicate that not all do/there is work to be done’

of course we have the added shouldn’t have to say it but given the Chalder and Gerada gaslight the cfs patients video that work does have to be changing the actions and attitudes of those who don’t recognise it, and haven't even realised they've been taught actions that such a non-recognition underlie the reason for ie they are conned and don't even realise they've been taught to do things that have been justified based on others' presumption everyone else also secretry thinks this (and removing those with ‘belief issues’ - it isn’t a protected religion but a bigotry)

but also …. Due to what that being so deliberately proliferated so no patient could even know if someone was stringing them along / had been taught to be duplicitous there is the added incumbency that also all staff should be required and trained to make it clear in no uncertain terms that are avoiding all of those one-liners from the video that were intende to mislead people into thinking they were understood but actually were being ‘amused because they lack insight’.

It’s a basic respect thing but also safety dignity and access to know people are using terms to ressure that aren’t the same as the code words wink wink nudge nudge we still seem to see.
 
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I think the “feel like…” is corporate speak.


It is useful in a 1-1 or personal situation to acknowledge someone’s sense of a situation and/or their feelings.

It is passive-aggressive in a corporate/formal situation to minimise someone’s complaint as a “feeling”. It recognises that point of view, but makes no admission of guilt in causing the situation which it’s claim/could claim led to that feeling. Keeps them out of any legal trouble.
 
Maat said:
The above contains the text of my complaint, the same day the Regulation 28 Prevention of Future Deaths report was issued following the Inquest into the death of Maeve Boothby O'Neill.

This following is copied from https://www.s4me.info/threads/uk-of...livery-plan-process.40610/page-10#post-585043


This is the reply I received, via my MP, from Andrew Gwynne MP, Parliamentary Under-Secretary of State for Public Health and Prevention of the Department of Health and Social Care today. It is dated 31 January 2025. Andrew Gwynne also has responsibility for long-term conditions.

My initial reaction would breach forum rules. So I will take some time to consider my response.

Here is the content of the reply from the DHSC:
Click to expand...
I too will refrain... as there seems a disjunct? between 'reality' and (political) rhetoric!
 
Apologies. I came across this and started to write. Am crashing so not completed.


By chance I came across our unread copy of the Sunday Times from last Sunday 23rd Feb.
In it was a report by Katie Tarrant of the inquest of a young female soldier who had killed herself following sexual abuse and harassment.

The "coroner read his scathing conclusion over two hours on Thursday..." ....

" It is unusual for a Coroner to deliver such a lengthy and detailed conclusion, and he was only able to do so because the inquest was listed under Article 2 of the Human Rights Act, used when it is suspected the state has failed an individual in their death." The article reported that the deceased's mother who pushed for this.

Of course I thought of Maeve. I don't know under what power her inquest was held.


Later in the paper was an article by Sean O'Neill, headed "If we cannot learn from fatal errors, families relive tragedy for nothing." Sean drew attention to the coroner's power ( used in Maeve's case) to write a PFD report whereby areas in healthcare, medical research, education and training could be pointed out where action could be taken to prevent future deaths. He reports that the written responses to the coroner have been underwhelming.
I am crashing so attach a link, paywalled, to the article. He describes the coronial system as greatly in need of reform.

https://www.thetimes.com/comment/co...families-relive-tragedy-for-nothing-5n8fxmgq8

There have been tweets discussing Sean's article for anyone on twitter.
 
I am not surprised that written reports to the coroner have been underwhelming. They will all have come from people with a vested interest in not rocking boats.

I seem to be the only physician trying to make some noise about this. I am setting up a thread about a video. No doubt it will pop up on your menus.
 
Maat said:
The above contains the text of my complaint, the same day the Regulation 28 Prevention of Future Deaths report was issued following the Inquest into the death of Maeve Boothby O'Neill.
…..
Here is the content of the reply from the DHSC:
Click to expand...

“People with ME/CFS deserve the most appropriate treatment and to be confident that the NHS can offer that treatment. I recognise that care for people with ME/CFS has varied widely, and in the worst cases has left some people feeling that their illness is not recognised by the health and care system.”


I remember reading this response (and other use of very similar words in Minister responses) earlier this year. Sorry, I have struggled to stay up to date on the forum in the last 6 months, only dipping in very occasionally.

My response on twitter to John McDonnell MP in March 2025 when he received a similar response:

https://twitter.com/user/status/1897934142009942110
 

M.E. Awareness and Reform
The Times

The Times had been reporting on ME (or chronic fatigue syndrome) for years, highlighting the stigma faced by people suffering from the misunderstood disease. But the death, in October 2021, of Maeve Boothby O’Neill, daughter of senior Times journalist Sean O’Neill, gave new impetus to the campaign. As the inquest into Maeve’s death app...

Read More
 
And yet nothing will be done. The gastroenterologists are digging themselves ever deeper into the belief of a 'third group' of functional patients who need not be kept alive like people with either physical or psychiatric illness.

Miller is still at the Royal College of Physicians.

There is work to do.
 
Jonathan Edwards said:
And yet nothing will be done. The gastroenterologists are digging themselves ever deeper into the belief of a 'third group' of functional patients who need not be kept alive like people with either physical or psychiatric illness.

Miller is still at the Royal College of Physicians.

There is work to do.
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Is there any way that we here can help with that work?
 
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