Update: Maeve’s mum, Sarah Boothby, has commented on this blog. I am posting her comment here:
Sorry if this seems picky but Maeve did not die in hospital [DT: Fixed! Not sure how I made this error] and the RDUH Trust document is what we call a treatment pathway. It is the first of its kind for ME as it clearly states, “When patients with severe or very severe ME are admitted to hospital, clinical staff are often asked to provide care for them which deviates from usual processes. This can feel difficult and uncomfortable. Staff will be offered supervision and support”.
Endless complaining about delaying publication of the Plan does not take into account how the Interim Plan, published for consultation in 2022, was informed by ME organisations that do not advocate for very severe ME and have no knowledge about ME as a progressive disease if not properly managed. This ignorance is how the NICE guideline fails every adult with ME in need of NHS hospital treatment of any kind. With a universal health care service in any democratic State, delays are not a bad thing.
I am impressed by the speed with which the DHSC has responded to evidence from the inquest not yet publicised by print media. It took less than a week for NHS England to decide to look at commissioning services for ME and to start be re-evaluating the fitness of existing CFS provision. CFS in the NHS is on a treatment pathway that responds to behavioural treatment. The pathway caused Maeve’s death. Maeve’s death is a fine example of how everyone with ME has been failed by CFS provision.
As I say, you may dislike my pickiness, but I am familiar with all the evidence and how little the printed word has yet conveyed of the full story.
**********
By David Tuller, DrPH
The British government, the National Institute for Health and Care Excellence (NICE), NHS England, and others have responded to Deborah Archer, the coroner in the case of 27-year-old Maeve Boothby O’Neill, who died in 2021 from complications of ME after three hospitalizations failed to halt her decline. At the same time, the Royal Devon University Healthcare (RDUH) NHS Foundation Trust, which runs the hospital involved in Maeve’s care has released a clinical guidance for a “planned and unplanned admission process for severe or very severe adult ME patients.” [*In this sentence, I initially wrote “the hospital where Maeve died,” even though she died at home. I apologize for the error!]
While any progress in addressing the enormous challenges revealed through the inquest is welcome, how much these steps will advance that goal is another question. They certainly represent a state of greater awareness on the part of critical organizations. Hopefully these and other development will ultimately lead to better care.
The inquest into Maeve’s death was held this past summer in Exeter, the university city in southwest England where she lived. The testimony and related evidence indicated a huge gap in care for patients like Maeve, who essentially starved to death while medical and social service personnel debated and argued over how to treat her and whether her condition was medical or psychological. The events have been widely covered by prominent UK media organizations. Maeve’s father, Sean O’Neill, is a long-time journalist at The Times and has written extensively about his daughter’s death, the inquest, and the failings of the health care system.
While the coroner found she could hold no one responsible for Maeve’s death per the required evidentiary standard, she nonetheless identified a series of missteps and lapses that she thought might have had an impact. She subsequently issued what is called a Regulation 28 report–a report to prevent future deaths, sending a copy to the Department of Health and Social Care, NHS England, and the National Institute for Health and Care Excellence (NICE), among others. She asked the agencies to explain by December 4th how they planned to address the concerns raised in the report.
Here is the opening of The Times’ story, from O’Neill’s colleague Fiona Hamilton, on the various responses to Archer:
“The NHS is carrying out an assessment of myalgic encephalomyelitis (ME) services across England after the death of Maeve Boothby O’Neill, whose case highlighted a lack of understanding and inability to care for sufferers of the illness.
“The National Institute for Health and Care Excellence (Nice), which provides advice to improve healthcare, is also re-examining its guidance on feeding support for people with severe ME. Education of medical professionals about patients, who have often been stigmatised, is also being ramped up.
“Andrew Gwynne, the health minister, has committed to better research ‘with the aim of better understanding the causes, identifying new treatments and improving patient outcomes.’”
Sarah Boothby, Maeve’s mum, believes the inquest process, while long and frustrating, has at least managed to highlight the disastrous state of care for patients like her daughter. “What the inquest has done is to provide a degree of scrutiny of the evidence,” she said. “They’ve gone through the process of investigating a death from ME and found what I would call systemic neglect.”
Boothby met recently with Gwynne, as he himself noted in his letter to Archer. She believes Gwynne, who has been open about his own experience with Long Covid, is committed to seeking better care for patients—despite the limitations of his role. “We could not be more lucky in having this minister, but that doesn’t change the fact that he’s a politician and not the NHS,” she said.
In his letter, Gwynne noted that the government’s long-awaited “ME/CFS delivery plan” [*I initially wrote “interim delivery plan,” but the upcoming version is expected to be the final plan] will be published in March of 2025. The plan has been in the works for years, and the March date represents a delay in publication of the final report. The plan “will focus on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease,” wrote Gwynne.
In its letter to Archer, NICE promised to “work with colleagues from the Royal Devon University Healthcare NHS Foundation Trust to see if there are examples of good practice that we can link to from our guideline pages” and to “consider appropriate amendments to the guideline on ME/CFS to emphasise the need for appropriate nutritional support.” NICE published a new ME/CFS guideline in 2021 that does not fully contemplate the sorts of circumstances involved in Maeve’s death and in other recent severe cases.
In its letter, NHS England reported having established “a specific working group to determine if additional support can be provided to commissioners of ME/CFS services,” with the first step being “a stock take of existing CFS/ME services in England.” The use of the term CFS/ME in this context is interesting—a tacit acknowledgement, perhaps, that many local NHS trusts have failed to implement NICE’s 2021 ME/CFS guidelines adequately, if at all.
The letter also referred to the new guidelines posted today by the NHS trust in Devon. “We understand that RDUH are in the process of developing formal pathways for acute admission and emergency admission for patients with ME/CFS and that the details of these will be shared with the Coroner by the Trust,” the letter noted.
Sean O’Neill had a mixed reaction to the developments, as quoted in The Times:
“It is a positive sign for ME sufferers that all these public bodies have listened to the coroner and responded to her findings.
“However, the actual responses are lacking substance. There is no sign that anything will be done to tackle the coroner’s main concern — that care provision for people with severe ME is ‘non-existent’ in the NHS. And it is upsetting to hear that the Department of Health’s delivery plan on ME appears to have been delayed again until March 2025 — almost three years after work on it began.“
I would argue that the “systemic neglect” goes much further than neglect of patients with ME.
Also in the UK news this week is the medical misogyny that women suffer in relation to gynecological illness/”women’s problems” (see here -https://www.bbc.co.uk/news/articles/c23v42jdle7o). I would contend that the two are very much related. You only have to look at Table 1 on page 6 of the 2017 JCPMH guidance document about medically unexplained symptoms (MUS) -https://www.slideshare.net/slideshow/guidance-for-commissioners-of-services-for-people-with-medically-unexplained-symptoms/71912851 – to see just how closely they are linked. It looks to me like ME and chronic pelvic pain (including painful periods and painful sex – the very symptoms of conditions like endometriosis) have been considered by the Royal College of Psychiatrists (RCPsych) and the Royal College of General Practitioners (RCGP) as ‘functional somatic syndromes’ to be dealt with primarily in the realm of mental health rather than physical health. For all those doctors and gynaecologists out there who now want to yell out “but I’m not a misogynist”, I, for one, am not saying that you are. Rather I’d say that that there is a deeply misogynistic and flawed dogma that has been allowed and encouraged by some to pervade medicine and medical teaching, a dogma that paints women (outnumbering men by a supposed ratio of 3 or even 4 to 1) as mentally or behaviorally deficient/unhinged somatizers or rather unpleasant attention-seekers. And I don’t think it’s just the RCOG and the RCPsych who have undermined (especially women’s health) with this dogma – it appears to me that another Royal College – the Royal College of of Physicians (RCP) – has had quite a hand in it too by allowing one of their publications to run an edition (January 2021) that focused so much on functional disorders and that promoted functional disorders/medically unexplained symptoms as being highly prevalent (see here -https://www.sciencedirect.com/journal/clinical-medicine/vol/21/issue/1).
To my mind, that is what the UK Parliament’s Women and Equalities Committee should be looking at and investigating now, not limiting their assessments of misogyny to gynaecological or female hormone-based issues but widening this right out to see how other other illnesses affecting women have been downplayed, underfunded and/or dismissed as hysteria – other very physical illnesses like ME, lupus, microvascular angina (aka cardiac syndrome X that was previously dismissed as non-cardiac chest pain), and more recently Long Covid, that predominantly affect women.
That’s NOW, not in 10 or 20 years time. Too many decades have passed and too many people have suffered and died with no attention paid to this.
Sorry if this seems picky but Maeve did not die in hospital and the RDUH Trust document is what we call a treatment pathway. It is the first of its kind for ME as it clearly states, “When patients with severe or very severe ME are admitted to hospital, clinical staff are often asked to provide care for them which deviates from usual processes. This can feel difficult and uncomfortable. Staff will be offered supervision and support”.
Endless complaining about delaying publication of the Plan does not take into account how the Interim Plan, published for consultation in 2022, was informed by ME organisations that do not advocate for very severe ME and have no knowledge about ME as a progressive disease if not properly managed. This ignorance is how the NICE guideline fails every adult with ME in need of NHS hospital treatment of any kind. With a universal health care service in any democratic State, delays are not a bad thing.
I am impressed by the speed with which the DHSC has responded to evidence from the inquest not yet publicised by print media. It took less than a week for NHS England to decide to look at commissioning services for ME and to start be re-evaluating the fitness of existing CFS provision. CFS in the NHS is on a treatment pathway that responds to behavioural treatment. The pathway caused Maeve’s death. Maeve’s death is a fine example of how everyone with ME has been failed by CFS provision.
As I say, you may dislike my pickiness, but I am familiar with all the evidence and how little the printed word has yet conveyed of the full story.
Sarah Boothby
Yes, indeed, a behavioral treatment pathway that must stop.
On Tuesday I had a long consult with an NHS consultant apropos a presentation which is presumably part of my ‘ME’. It became clear that said doc, despite saying that he knew about the new 2021 Nice Guideline for ME (and I asked “but did you read it?” and he responded in the affirmative) thought PACE was still viable, still good research, that it hadn’t been debunked as bogus. The top-down trickle of information isn’t even giving the truthful picture. I provided forceful ‘testimony’ (as best my cognitively deficient brain would allow) hopefully enough to raise a few questions in his head. Who knows ?
BUT it’s all so wholly insufficient to prevent harms, not only deaths, but very real on-going harms in patients at all levels of disease, and they are happening right now, right this minute to sufferers of ME right here in the UK. I fact I would go so far as to say that every patient with ME in the UK will have been harmed in some way by ‘healthcare’ in the UK. It simply can’t be otherwise imo.
Rosie Cox commented:
“It became clear that said doc, despite saying that he knew about the new 2021 Nice Guideline for ME (and I asked “but did you read it?” and he responded in the affirmative) thought PACE was still viable, still good research, that it hadn’t been debunked as bogus.”
I wonder, could that possibly be because the Royal Colleges are a law unto themselves (see -https://www.rcgp.org.uk/representing-you/policy-areas/guidance-on-me-cfs) but doctors will accept without question what they put out?
David wrote:
“In its letter, NHS England reported having established “a specific working group to determine if additional support can be provided to commissioners of ME/CFS services,” with the first step being “a stock take of existing CFS/ME services in England.” The use of the term CFS/ME in this context is interesting—a tacit acknowledgement, perhaps, that many local NHS trusts have failed to implement NICE’s 2021 ME/CFS guidelines adequately, if at all.”
From what I know of NHS England, I think David’s being overly generous if he’s suggesting that their use of the term CFS/ME (rather than ME/CFS) is to point out many local NHS Trusts’ non-compliance with the NICE guidelines.
All that’s really needed is the prosecution of all abusive staff and the immediate dismissal of all those failing to follow official guidelines,
with immediate action and retraining of their hospitals and departments, and within training and regulatory organisations.
if no improvement is made, they should be shut down and their NHS funding removed.
This would help all patients and staff.
As with any other condition that’s singled out for such mistreatment and systemic neglect with patients dying as a direct result,
this should be enforced by legislation,
especially when professional governing bodies are failing, they should be prosecuted for their failures especially when they result in cruelty, deaths and avoidable disability.
It’s unacceptable and revolting that those involved in essentially starving and neglecting a seriously ill young lady to death,
Are allowed to dodge any personal liability or responsibility.
They should all be prosecuted for gross malpractices and causing death and suffering by medical negligence.
That would solve everything immediately and translate much more swiftly to all other services and agencies.
Maeve died not from natural causes due to m.e,
but from spite, malicious misdiagnosis and systemic failures and thinly disguised systemic disability hate crimes abuse within systems that are employed to look after patients.
Those politicians and right wing media who have brainwashed an entire generation into neglecting and abusing the disabled and vulnerable people to death for decades,
including medical professionals and services and authorities,
should also be prosecuted and fined for this genocide with the funds going directly into funding specialist units, community care and compensation for their victims.
Rest in peace and power dear Maeve,
we will never forget you, or the others lost in this senseless war on our most vulnerable citizens,
All just to try to hide abusive criminals and systemic failures.
Dear Sarah,
Your pickiness is both welcome and apt and I hope the full story will be told. Several of my family members have had ME (very mildly, thank heavens) and they also admire your work. I have adopted the expression ‘human flourishing’ when talking about health care and provision and will always credit Maeve for that.
With great admiration for all you do,
Polly
CT pointed out that “the Royal College of Psychiatrists (RCPsych) and the Royal College of General Practitioners (RCGP) as ‘functional somatic syndromes’ to be dealt with primarily in the realm of mental health rather than physical health” …
Are they using AI?
(Putting A Face on Machine Mutation – 5)
As someone who has had ME at different levels over my lifetime ( but never as severe as Maeve) it’s important to point out that the mistreatment starts at the most basic level.
Even when only midly affected I was still faced with ignorance, unhelpful advice and/or neglect.
The very severely affected like poor Maeve needed their help just to stay alive. Which they couldn’t or wouldn’t do.
My probable future is to be left with dwindling family or an old age home until I eventually pass away.
Every now and then the DWP will terrify me and blame me for the lack of Consultants reports on my condition (when they know that there are no ME Consultants to write them). Then try and remove any Govt Benefits I am entitled to.
I will probably never be able to access appropriate NHS Services or meet a NHS doctor in this field who isn’t tied to some dodgy idea that should have died out, such as Hysteria.
The only reason these opportunist parasites are trying to get involved
In this area is the vacuum space where a real service should be. No one else wants them unless it’s an area with no research.
The NHS door will remain firmly closed to me and thousands of other people for no reason other than they can get away with it.
It is utterly depressing to read about the pathetic response from NHS England and all of the other “Stakeholders” in this process.
Let’s be clear, they are floundering.
Either that, or they deliberately wasting time in the hope that the research (which isn’t being funded and therefore isn’t happening) will throw up some answers which will get them off the hook.
Currently, they appear to have not the first idea about this disease, the immune response that refuses to turn off, it’s progressive nature and ultimately, its potential to kill.
Is it therefore any wonder that most Doctors haven’t a clue what they should be doing in order mitigate their patient’s suffering?
With the odd exception, the messaging from the established Charities isn’t making any impact. They need to rethink what they’re doing. They try to play nicely, but they’re up against people who are playing a different game and who’s only concern is winning.
Then there’s BACME – The British Association of Clinicians in ME/CFS who, being forever behind the knowledge curve, eventually changed their name in order to ditch their previous allegiance to the term CFS/ME. What a complete waste of time they are!
Consequently the medical profession in the U.K. are failing large numbers of patients on a massive scale and Britain is one of the worst places in the developed world in which to be suffering with this disease.
And what does the British Government do?
They turn to the Architect of the complete Shit Show which set sail in 1990 and which landed us where we are now, somehow (magically?) expecting that the result this time around will be different. Do they not have the intelligence to realise that having appointed him to the Management Board of the NHS, “Lord Voldemort’s” most pressing concern is unlikely to be for the 1000’s of people who’s situation he has made worse, but rather to use his position in order cement and protect his dubious legacy?
Doing the same thing over again and expecting a different result.
That, my friends, is the very definition of madness.
Ironically, it is the news media who are finally coming to our aid – (but maybe not quite the same news media who pedalled nonsense 20+ years ago) thanks to the sterling efforts of dedicated patient-led advocacy groups and good investigative journalists like David Tuller, Brian Hughes and David J Black.
But by far my biggest thanks goes to the SARS-CoV-2 virus, the viral pathogen that helped to focus minds on what happens when the body’s immune response to a viral infection refuses to turn off and consequently develops into M.E.
If there is a single message which needs to be grasped by the numpties who taken such a long time to publish the NHS Delivery Plan for M.E., it is that one.
Disappointingly, I’m quite sure that they won’t.