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

'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 ...
 

Attachments

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!......

To discuss the Suffolk ME situation, please go to this thread:
United Kingdom - Suffolk and Norfolk ME/CFS services
 
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Jonathan Edwards said:
Thanks for that @Suffolkres.
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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.
 
Suffolkres said:
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 and Finish, 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......

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

Healthwatch engaged.

All boxes ticked....

So, What could possibly go wrong in SNEEICB?

Part 2 later!......
Click to expand...
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?
 
Haveyoutriedyoga said:
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?
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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:

"Prevention of Future Deaths Report and publications by the DHSC of it's report summarizing responses to the My Reality Consultation process in respect of ME/CFS


I am a constituent, and have suffered from ME/CFS since 2008. I became a severe sufferer in 2011 immediately following NHS treatment in Bath. That deterioration has been permanent and has worsened over the years. I’m now 66 years old. This type of deterioration is in line with similar preliminary results from the DecodeME study in August 2023. Initial findings from the DecodeME questionnaire data published - DecodeME


I have, and am, participating in the following:


1. Government Consultation on ME/CFS ‘My Full Reality’ in October 2023.

2. I am enrolled in the DecodeME Genome-wide study and supplied a DNA sample. Full results are due next August/September.


A Regulation 28 prevention of future deaths report will shortly be landing on the desks of the Secretary of State for Health and Social Care, NHS England, NICE and a number of institutions. It follows the conclusion of the Inquest into the death of 27 year old Maeve Boothby-O’Neill who died in October 2021 and will be issued by the Assistant Coroner for Devon. Although the Report will be made public, the response by government departments, NHSE, NICE and other institutions does not have to be. Revised Chief Coroner's Guidance No.5 Reports to Prevent Future Deaths - Courts and Tribunals Judiciary


Maeve Boothby-O’Neill’s Inquest and subsequent prevention of future deaths hearing was widely reported on and you should easily be able to research the facts online. They are harrowing.


This illness has been recognized by the World Health Organisation since 1969; 55 years of no effective biomarker, treatment, harm, dismissal, abuse, deaths and inquests. This continued systemic injustice ensures the NHS not only does not reach us in time to save life, but illustrates that our lived experience is that it has seldom been there for us since the early 1970s.


There have been a string of publicly reported deaths from ME/CFS dating as far back as 2005. It’s almost 20 years since the first death certificate issued, again by a coroner, cited the cause of death as ME. Despite this, there has never been an NHS protocol for the treatment of severe and very severe ME/CFS sufferers, particularly those in danger of malnutrition due to eating difficulties resulting from this illness. Instead , hospitals consult liaison psychiatrists when patients are admitted with severe eating difficulties as if they were anorexia patients.


Maeve died in the same month there was an 11th hour delay in publication of the reviewed NICE Guideline on ME/CFS in October 2021.


Maeve died because no-one in the NHS knew how to treat her illness without causing the illness to significantly deteriorate; resulting in her starving to death. This is intolerable situation which has existed for decades is no doubt why a prevention of future deaths report has finally been issued, because they still don’t know. However, they do know how to prevent starvation in malnourished patients with eating difficulties.


Publication of the Department of Health and Social Care’s ME/CFS Delivery plan resulting from the ‘My Reality’ Consultation process in 2023 is delayed. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Hansard - UK Parliament Subsequently, the Department stated that the plan would be informed by the results from the consultation and published by September 2024.


I am too ill to engage regularly with the internet and am only a member of the Science4ME online forum when I do. I have been absent for the last 6 months due to a prolonged period of Post Exertional Malaise which has left me bedbound, incontinent (new symptom), and with eating difficulties, along with a marked increase in all the other symptoms. During the process of preparing this simple email over the last two weeks I am already deteriorating again.


The Delivery Plan was due for publication in September 2024, and I knew that Maeve’s inquest would have concluded by the end of September so I recently logged on briefly to check for updates.


The S4ME Forum have a thread listing questions raised in the House of Commons and House of Lords on ME/CFS.


I attach a link to this thread ( UK House of Lords/ House of Commons Questions | Page 33 | Science for ME (s4me.info) ) from which you will see that Labour Shadow Minister (Education) raised a question of the Secretary of State for Health at the time ( Hansard source(Citation: HC Deb, 26 April 2024, cW) which was answered by Andrew Stevenson MP, Assistant Chief Whip and Health Minister.


In part of his reply the Minister stated:


“We have finished consulting on My Full Reality, the cross-Government interim delivery plan on ME, which seeks to improve the experiences and outcomes of people living with this condition. We are in the process of analysing the results of the consultation. The views and experiences gathered through this consultation will be used to build a picture of how well the interim delivery plan identifies and meets the needs of the ME community, and to highlight any significant gaps where further action may be necessary. We will publish a summary of the consultation responses, which will inform the final delivery plan being published later this year, in due course.”



The report of the summary of the responses to the ‘My Reality’ public consultation has not been published a full year after the end of the consultation period. Publication of the subsequent Delivery Plan itself is now planned for the winter. There were a little over 3,000 responses to the consultation process.


I have also been unable to find a published equality impact assessment for this process.


This is in stark contrast to the consultation which ran on the Womens Health Strategy, which also included some responses from ME/CFS sufferers as the report of the summary of responses for that consultation process shows. Women's Health Strategy: Call for Evidence - GOV.UK (www.gov.uk)

It took them 6 months to analyse responses from 100,000 individuals, and a further 4 months to analyse responses from 436 organisations and individuals with expertise in the area – 10 months in total.


"For 14 weeks, from March to June 2021, the UK government sought views on women’s health issues and women’s experiences of the healthcare system in England.

We have now published the full analysis of this call for evidence in 2 separate reports. The first analytical report (released in December 2021) summarises feedback from nearly 100,000 individuals who responded to the ‘Women’s Health – Let’s talk about it’ survey component of the consultation. The second report (released in April 2022) summarises feedback from 436 individuals and organisations with expertise in women’s health. Both reports should be read together for a complete picture of the evidence generated.

The results have directly informed Our Vision for the Women’s Health Strategy for England as well as the full strategy, due to be published later this year. “


The final Government policy document was published in July 2022. Women’s Health Strategy for England - GOV.UK (www.gov.uk)


Whereas, a whole year following the end of the My Reality Consultation process in ME/CFS at the beginning of October 2023, where they received just over 3,000 responses in total, it seems to have been impossible for either the Tory or Labour Government to do the same for ME/CFS sufferers. This is clearly discriminatory against a mostly disabled and some, like myself, severely disabled population of England in this illness group. A substantial breach of the Equality Act 2010.


As a result of what I have seen, and in view of the growing widespread concerns emerging regarding the eLearning materials being drafted for health care professionals as part of the Delivery Plan, I request that you ask the following questions in your own words of the Secretary of State for Health and Social Care on my behalf:


Can the Secretary of State confirm when the report on the summary of responses to the consultation mentioned in the reply given (referred to above), by the then Minister for Health, be published?



Can the Secretary of State confirm that it will be published in advance of publication of the Government Delivery Plan on ME/CFS? In other words, now. There can be no possible excuse as these responses are presumably already informing formulation of eLearning modules which have reached review stage.



The analysis concerned must have already been completed in order for the second module of awareness raising and GP training to already have been drafted if it is informing the process as claimed.


It is highly likely that in it’s response to the Coroner’s prevention of future deaths report, the DHSC will respond referencing in glowing terms the action it is taking regarding the ME/CFS Delivery Plan and the £3.2m DecodeME study. This would, of course, not be truly representative of the current situation either on severe and very severe ME/CFS nor parity in biological research.


Failure by the Secretary of State or his Minister to provide a full and substantive response to these two questions within the next 28 days from today’s date will result in my immediately seeking legal advice on the following issues:


1. The potential for a Judicial Review in respect of the consultation process and delivery plan as a whole.

2. A potential claim against government departments on the grounds of disability discrimination which I shall request should also cover the lack of parity of biological research for the last 20 years. This was succinctly described in a Channel 4 interview 6 months ago. World's largest genetic study of ME offers hope to sufferers (youtube.com)


As I am in my second decade of experience with this illness and it’s history, and by way of pacing this activity, I have already begun drafting that initial approach to solicitors in anticipation of the expected outcome that no commitment to a deadline for publishing this report summarizing the responses received during the consultation process will be received.


I shall be approaching the same solicitors who acted for an ME/CFS patient in pursuing an application for a Judicial Review, which encouraged NICE to publish the revised Guideline in 2021 before a hearing was obtained.


Obviously, along with these facts I shall forward to the solicitors a copy of the prevention of future deaths report previously referred to, when it is publicly available.


It should be remembered that it was the last Labour Government’s DWP and DH who funded the now globally notorious piece of health research, the £5m PACE trial, and under which I received the treatment which directly resulted in the immediate and subsequently permanent deterioration of my condition. Thus ensuring that I was never able to work again and subsequently denied ill health retirement from my LGPS pension. Clearly, the ‘expert’ they contacted in Oxford was wrong when he advised my employer that it was not a permanent illness in 2012.


The quality of the scientific evidence which the PACE trial results purported to provide, was downgraded in the revised 2021 NICE Guideline; one of the reasons highly influential individuals attempted to use private channels to interfere with the NICE publication of its revised Guideline. 3 years later here we still are with the NICE guidelines being routinely ignored.


There is absolutely no sense of urgency surrounding this illness from any government department or NHSE.


I appreciate that you may not be aware of, or up to date with this illness. By way of context, for the sort of background information some of which you are unlikely to receive from civil servants, I include the following links with contributions from experts in their fields:


1. The Tangled Story of ME/CFS - Dialogues (dialogues-mecfs.co.uk) If you have an hour to spare this link provides a potted history of the illness.

2. Background to House of Commons Debate on 24 January 2019 (meresearch.org.uk)

3. Appropriate ME Treatment - Hansard - UK Parliament video link UK House of Commons ME Debate January 2019 - Full (youtube.com)

4. This $8 Million Medical Trial Is A Joke (youtube.com) If not, this 25 min link quickly and simply explains some of the main problems with the PACE trial results and some of the reasons it was significantly downgraded as scientific evidence for the previous biopsychosocial unevidenced belief as to the nature of this illness by the NICE Committee. The corresponding treatment regime the study espoused as curative, which was also included in the 2007 NICE Guideline, was specifically withdrawn in the revised NICE Guideline. A regime which Maeve, like myself, was subjected to in the South West under the former 2007 NICE Guideline.

5. Overstating unevidenced success rates of recovery from psychological therapies is no longer confined to ME/CFS. IAPT, now known as NHS Talking Therapies, evolved following the PACE trial study. I found an email in my inbox today from CBT Watch with this blog concerning a recent decision by the Advertising Standards Agency. NHS Talking Therapies' Partner SilverCloud Found Guilty of Breaching Advertising Standards - CBT Watch


Finally, please make allowances for any grammatical errors, omissions, repetitions or rambling in this email. These are the cognitive symptoms of my illness on display as I am still in PEM as I prepare this. It has taken me days to prepare as it is, and I have checked it as many times as my limited energy and current cognitive capacity will allow.


However, there is a moral imperative of not waiting for any potential return to my health levels of severe ME/CFS 6 months ago at this stage.


I thank you for your assistance and look forward to the response.


Yours faithfully


PS. As I was preparing to email this letter to you, I see that it is reported today in The Times that the Assistant Coroner has already issued her Regulation 28 prevention of future deaths report.

Coroner demands urgent action to prevent further deaths from ME (thetimes.com) and also covered in Channel 4 News tonight NHS told to act to stop ME deaths (youtube.com)"
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I'll update the forum with the response and pick up any suggestions/comments you have at that time. I can't stay and chat as am still very unwell at the moment.
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Re the Regulation 28 report, some excerpts (copy posted above by SuffolkfRes)
THIS REPORT IS BEING SENT TO:
1. Andrew Gwynne / Wes Streeting Department of Health and Social care
2. NHS England
3. NICE
4. Medical Research Council
5. National Institute for Health care and Research
6. Medical Schools Council
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The MATTERS OF CONCERN are as follows. –

(1) During the course of the evidence it became clear that there were no specialist hospitals or hospices, beds, wards or other health care provision in England for patients with severe Myalgic encephalomyelitis ( ME ). This meant that the Royal Devon and Exeter Hospital had no commissioned service to treat Maeve and patients like her.

(2) During the course of the inquest it became clear that there was no current available funding for the research and development of treatment and further learning for understanding the causes of ME / Chronic Fatigue Syndrome (CFS) .

(3) During the course of the inquest it became clear that there was extremely limited training for Doctors on ME/ CFS and how to treat it – especially in relation to severe ME.

( 4 ) During the course of the inquest it became clear that the 2021 NICE guideline on ME did not provide any detailed guidance at all on how severe ME should be managed at home or in the community and in particular whether or not there is any necessary adaptation needed to the 2017 guidance on Nutrition support for adults : oral nutrition support, enteral tube feeding and parenteral nutrition.
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ACTION SHOULD BE TAKEN
In my opinion action should be taken to prevent future deaths and I believe you have the power to take such action.

YOUR RESPONSE
You are under a duty to respond to this report within 56 days of the date of this report, namely by 3rd December 2024. I, the Coroner, may extend the period.

Your response must contain details of action taken or proposed to be taken, setting out the timetable for action. Otherwise, you must explain why no action is proposed.
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So, responses due by 3rd December. I don't know if the responses are made public? Presumably so.
 
OUR RESPONSE
You are under a duty to respond to this report within 56 days of the date of this report, namely by 3rd December 2024. I, the Coroner, may extend the period
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I’m confused. The Times report says: “However, the coroner’s recommendations are not legally enforceable and at a hearing last month Archer said that she had issued reports in other cases but that ‘nothing was done’”.

Does anyone know the legal situation? Is the “duty to respond” not a legal duty? @Valerie Eliot Smith
 
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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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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:
Click to expand...

Thank you and bless you for this.
It's so overwhelming and sad.
I feel your pain.

Let's hope your MP does too.
 
My understanding was that there was a legal duty just to respond - although a respondent can also, for example, explain why they believe no action need be taken. From the Chief Coroner's guidance:
49. A person or organisation must respond within 56 days, or longer if the coroner grants an extension (Regulation 29(4) and (5)).

50. A response must detail the action taken or to be taken, whether in response to the report or otherwise, and the timetable for it, or it must explain why no action is proposed (Regulation 29(3)).
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Here's a link to Reg 28/29. And the guidance on the publication of responses:
58. The Chief Coroner may publish a report or a response, or part of one or in a redacted or summarised form (Regulations 28(5)(a) and 29(7)(a)).

59. A person or organisation giving a response to a PFD may make representations to the coroner about the release or publication of their response (Regulation 29(8)). Representations must be passed by the coroner to the Chief Coroner (Regulation 29(10)).
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Checking the public archive of PFD reports, and looking back a few months, I see that a number of responses from various NHS trusts, councils & other bodies have been made public in a variety of different cases. For example, a number of detailed responses were made public in regard to the Ofsted-related case (CW) from last year which also attracted significant media attention.

NHS England has a webpage about how they handle PFDs submitted to them.

As for today's print media, in addition to the Times story there are also these in the Guardian and Telegraph (ETA: fixed last image)

guardian_08oct24.jpgtelegraph_08oct24.jpgtimes_08oct24.jpgtimes_08oct24_p5.jpg
 
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Some more information on who has access to the Coroner's section 28 report and the responses to her questions

From the Coroner's report, AnnexeA


REGULATION 28 REPORT TO PREVENT FUTUREDEATHS THIS REPORT IS BEING SENT TO:

1. Andrew Gwynne / Wes Streeting Department of Health and Social care
2. NHS England
3. NICE
4. Medical Research Council
5. National Institute for Health care and Research
6. Medical Schools Council





8.COPIES and PUBLICATION


I have sent a copy of my report to the Chief Coroner and to the following Interested Persons – Mr. Sean O’Neill, Ms Sarah Boothby, Barnfield Surgery,Devon County Council, Royal Devon and Exeter NHS Trust. I have also sent it to the ME Association, Dr Michael March, NHS Southwest England and Steve Moore, Chief Executive of the Integrated Health Board, who may find it useful or of interest.

I am also under a duty to send a copy of your response to the Chief Coroner and all interested persons who in my opinion should receive it.


I may also send a copy of your response to any other person who I believe mayfind it useful or of interest.


The Chief Coroner may publish either or both in a complete or redacted or summary form. He may send a copy of this report to any person who he believes may find it useful or of interest.

You may make representations to me, the Coroner, at the time of your response,about the release or the publication of your response.


9

7th October 2024 Deborah Archer.
edit: my bolding
 
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Sonya is excellent as usual.

The piece by Fiona Hamilton is well worth listening to and for a general media journalist she gives a useful account. It is interesting though that she repeats the implication given by the coroner that somehow the problem was not knowing how to treat ME/CFS. There seems to be an idea that 'ME' itself is a progressive fatal condition and that since we do not know how to treat it nobody knew how to keep Maeve alive. Which is of course not the case. The doctors knew how to keep Maeve alive. For sure, the bigger background problem is that we cannot teat ME/CFS itself and stop people getting into this situation but does not justify any suggestion that for he time being nothing more could have been done.
 
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