By David Tuller, DrPH
In January, I wrote a piece for Codastory.com about Maeve Boothby O’Neill, a young woman from Devon, England, who died from ME-related complications in October, 2021, at the age of 27. This week, at a pre-inquest hearing, it was revealed that the medical director of the hospital involved in Maeve’s care declared in a written statement that the UK’s National Health Service has no policy or guidance on severe ME cases and that “action is required at the highest level” to address this deficiency.
Maeve’s parents, Sarah Boothby and her ex-husband, Sean O’Neill, have been pushing for an inquest since Maeve’s death and have been frustrated at the delays in the process. The preliminary hearing was held this past Monday at 10 am. (In San Francisco, I got up in the middle of the night to watch the proceedings on Zoom. But the sound on my end was so garbled that I couldn’t understand a thing. After a while, I went back to bed. Others on the Zoom call apparently did not have the same difficulty.)
(Earlier today, I spoke with Boothby about her impressions of the hearing. Here’s a recordng of our conversation. It’s on youtube but is audio only. The connection wasn’t the best; we seemed to have had a slight sound lag.)
Maeve died at home after three stays at the Royal Devon & Exeter Hospital in the preceding months. She was unable to eat and required a feeding tube but hospital personnel refused to accommodate her wishes. In the end, she chose not to return to the hospital because she didn’t believe she would receive the care she needed to save her life.
In May, 2022, O’Neill, a prominent correspondent for The Times, wrote about his daughter’s death; he followed up last July with another article slamming the delays in the inquest. On Monday, a Times colleague, Will Humphries, covered the proceedings. The headline on his report–“Hospitals have no services for most severe ME cases, coroner told”–highlighted a key point made repeatedly by Maeve’s parents and ME/CFS advocates: This case is not just about one woman’s untimely death but involves a much larger failure on the part of the NHS.
The hearing was essentially an exercise in housekeeping to prepare for the main event—a full two-week inquest expected to take place sometime next year. At the hearing, both O’Neill and Boothby requested the presiding coroner, Deborah Archer, to hold an Article 2 inquest, a process based on a plank of the European Convention on Human Rights. Article 2 of the convention protects people’s “right to life,” and an Article 2 inquest allows for a broader examination of systemic lapses or flaws implicated in a death. Archer is expected to rule on that aspect of the case in the near future.
The hearing was not designed as a forum for introducing evidence. In his remarks to Archer, however, O’Neill managed to highlight revealing comments made by Anthony Hemsley, the medical director of the Royal Devon & Exeter Hospital, in his written statement for the inquest, which has not been made public.
According to the article in The Times:
O’Neill, speaking at a pre-inquest review hearing, told Exeter coroner’s court that Anthony Hemsley…said in a recent statement that “for patients with severe [or] very severe ME there are no commissioned specialist inpatient services both regionally and nationally.”
In a statement to the coroner’s court, which has not yet been made public, Hemsley said: “This gap in service has also been confirmed by the local integrated care board [responsible for planning and funding most NHS services in an area]. In order to rectify this situation, action is required at the highest level”…
O’Neill told the coroner that Hemsley was describing “a failure to protect not just Maeve’s life but the lives of those, like Maeve, with severe ME.”
“This was not a case of a local hospital being unable to treat a patient with a particular and unusual illness,” he said. “This is a nationwide failure to help ME sufferers. This is the very definition of a major systemic failing.”
“In my view this is an admission that there was a breach of the’ duty to protect someone who was in the care of the state … That breach, in the form of an admitted inability by the NHS to provide care, led directly to Maeve’s death.”
I’d suggest that everyone listens to the recording of Maeve’s mother talking to David. To me, she’s describing a NHS, or rather a form of failing medicine in the UK, that I recognize so well – one that is completely broken, with patients who are unable to get the treatment that they need being forced to consider going abroad, (if they are able). She’s quite right, I think – it’s not just the case of one local service failing, there seems to be nowhere to turn. You try to go private and doors appear to be slammed in your face. You wonder if you could be being paranoid and that it’s not as bad as your gut is telling you it is. But then you realize, no, it really is this bad, and we’re almost certainly the sane ones here and it’s UK medicine that’s lost its marbles. And as Sarah notes, this is not just about ME – this encompasses Long Covid too, but I’d also include patients with other unexplained symptoms or symptoms that are deemed ‘functional’ . It all seems to be coming from the same wretched place and I suspect that millions in the UK are being put at risk as a result.
I keep going on about this, but I think it’s very likely the reason for the high level of economic inactivity now in the UK that is impacting the UK’s economy – that supposedly unexplained/inexplicable uptick in economic inactivity that particularly applies to women and that started before the pandemic so can’t be blamed solely on Long Covid. There are so many patients who are being failed, but it appears that medics are taught – don’t investigate or try to treat them, you may cause them iatrogenic harm; don’t listen to them or indulge them, they’re (mostly) somatizing women; don’t commission care for them, you’ll be pouring good money after bad; instead put them down as psych cases, clear your lists of your resource-wasting heart-sinks and concentrate on the really sick people.
If nothing else, what a terrible waste of the UK’s main asset – its people and their skills. All that effort and money spent on education, for nothing. All those skills lost. All those other people impacted and made less productive. (If half of all outpatients aren’t having their healthcare needs met, what’s the knock-on effect of that on their families?) To my mind, something has gone terribly wrong and there should now be a UK public inquiry into the whole MUS/functional construct that ME has been central to for decades. Unless something dramatic happens to address our nation’s sickness, how will the UK economy ever recover?
This seems to be a problem in other western countries too:
“As noted in the IOM report:
An estimated 836,000 to 2.5 million Americans suffer from ME/CFS.
About 90 percent of people with ME/CFS have not been diagnosed.
ME/CFS costs the U.S. economy about $17 to $24 billion annually in medical bills and lost incomes.
Some of the reasons that people with ME/CFS have not been diagnosed include limited access to healthcare
and a lack of education about ME/CFS among healthcare providers.”
(https://www.cdc.gov/me-cfs/about/index.html)
Sad.
David wrote “In January, I wrote a piece for Codastory.com” …
A great piece of work at a great internet site IMO.
I added it to the Links page …
I don’t think that “ME” is ever defined in this article. I follow medical news and I could not figure out in the entire length of the article what “ME” refers to.
Acronyms can be like a private code between people who know what it means… And the rest of us eventually give up on reading these articles. That is unfortunate because we can be advocates for health care.
http://www.positivehealth.com/article/cfs-me/medically-unexplained-symptoms-diverting-5-year-funding-from-mental-health
My article shows how ME has been buried within the classification ‘Medically Unexplained Symptoms’ via a ‘Table of Functional Somatic Syndromes by Speciality’ from an article by neurologist Jon Stone on ‘functional neurological disorders’ in the ‘Guidance for commissioners of services for people with Medically Unexplained Symptoms’
Below is the article’s title and the first few paragraphs:
‘Commissioning inappropriate mental health services for people with complex medical disorders would be an unethical use of funds which are desperately needed for people who have genuine mental health problems.
Cover Joint Commissioning Panel
The Joint Commissioning Panel for Mental Health have produced Guidance for commissioners of services for people with medically unexplained symptoms (MUS),[1] which urges the creation of NHS-wide services for this patient group. This report insists that MUS is a widespread mental health problem, for which treatments, which must be based on the BPS (biopsychosocial model), are ‘evidence based’, and would ‘result in improved outcomes for patients and substantial cost-savings for the healthcare system’.
What, Exactly, is MUS?
According to the first of the ‘Ten Key Messages for Commissioners’[1], MUS ‘refers to persistent bodily complaints for which adequate examination does not reveal sufficient explanatory structural or other specified pathology.’ The symptoms are common, ‘presented in various degrees of severity in all areas of the healthcare system.’ Many have ‘complex presentations caused, or exacerbated, by co-morbid mental health problems’.
Table 1 – Functional Somatic Syndromes by Specialty’
We are not surprised to learn that this ‘Guidance’ has been written by Simon Wessely. It includes reference to patients who are hospitalised and are using feeding tubes, so it clearly refers to very sick patients, and as ‘chronic fatigue symdrome and myalgic encephalitis’ are named in Stone’s table, this would include the severely ill.
The ‘Guidance’ recommends funding for an extensive network of care, and training of staff in all areas of the NHS in the biopsychosocial model.
Another quote from the article:
‘There has been a tremendous and successful effort to improve funding for mental health services. Mental health has always been a bit of a Cinderella issue in the NHS, and improved funding is very much needed. It has now been promised, and The Five Year Forward View sets out the conditions and types of services for which this funding will be used.
‘Medically unexplained symptoms’ does not appear anywhere in this document.
‘The Five Year Forward View’ is followed by a more detailed plan for its implementation.
‘Implementation of the Five Year Forward View for Mental Health’ [25]
This report contains just three, almost incidental references to ‘medically unexplained symptoms’:
p. 16 ‘Two-thirds of the additional people receiving services will have co-morbid physical and mental health conditions or persistent medically unexplained symptoms.’ ‘This approach is also expected to release significant savings and efficiencies for the NHS, based on evidence which demonstrates reduced healthcare utilization in, for example, A&E attendances, short stay admissions and prescribing costs’;
p. 17 Workforce requirements. ‘This includes top-up training in new competencies for long-term conditions and medically unexplained symptoms…’;
p. 18/19 Investment and Savings. ‘The strongest evidence is in diabetes, COPD, cardiovascular disease and for some people, chronic pain and medically unexplained symptoms’.
These almost off-hand references, without any discussion or explanation, are all that you find in this document.
However, by the time MUS has reached the Guidance for Commissioners, ‘medically unexplained symptoms’ has blossomed into a major health problem requiring extensive services, staffing, models of care and training of staff, along with assurances that these services will pay for themselves in improved patient outcomes.’
This is how ME has been included in a mental health category, for which treatment must be based on the BPS model, which precludes further medical investigation and treatment.
It isn’t just that there is no provision for treatment of severe ME – severe ME has been framed as one illness in the overall MUS category, and very specific advice for getting mental health funding is contained in this document.
It is so much worse than you might think – this hostility to people with ME has been deeply and powerfully embedded in our culture, and now formally via the spurious category, MUS.
According to this ‘Guidance’, staff must be trained in the BPS model and its application in all NHS settings. Insofar as this thinking pervades the NHS, staff are being trained to look on ME/CFS as entirely a mental health problem, not a medicall one. In this model, providing the kind of medical help Maeve required would have been encouraging a person to believe they have a medical problem when it is just psychological.
How people can die from problems which are ‘not medical’ is not explained.
But if we are questioning the failure to commission medical services for Severe ME, this ‘Guidance’ indicates the source of the attitudes encountered by Maeve and her family.
It look like it’s all about trying to shave lots of money from the NHS budget -https://www.england.nhs.uk/2018/05/mental-health-game-changer-care-leads-to-75-reduction-in-hospital-admissions/ . Health chiefs don’t seem to understand that patients going away/reduced admissions doesn’t necessarily mean that they have recovered but rather that they might have lost all faith in their doctors and the NHS and be suffering in silence. If customers are insulted and demeaned then they’re they’re probably not all that likely to come back. MUS patients haven’t been followed up to see how they’re doing so how would health chiefs know? Instead of recovering, patients fall out of employment and become either the unemployed or the economically inactive.
What the JCPMH’s “Guidance for commissioners of services for people with medically unexplained symptoms” failed to mention alongside its claim of high MUS prevalence in outpatient clinics (see -https://www.slideshare.net/jcpmh/guidance-for-commissioners-of-services-for-people-with-medically-unexplained-symptoms page 7 and reference 16 – Nimnuan et al 2001) was the unacceptably high rate of misdiagnosis that was uncovered in those same clinics. To my mind, that should have been the headline news for NHS commissioners with a warning that they follow a cost-cutting MUS strategy at their peril. That JCPMH guidance document for MUS includes non-specific chest pain as an example of a functional somatic syndrome, and non-cardiac chest pain has been synonymized with both cardiac syndrome X and non-specific chest pain (see Rogers et al 2021 -https://www.rcpjournals.org/content/clinmedicine/21/1/37) so people might think that cardiac syndrome X is therefore a functional problem too. But the British Heart Foundation doesn’t appear to see cardiac syndrome X that way -https://www.bhf.org.uk/informationsupport/heart-matters-magazine/medical/all-about-microvascular-angina#:~:text=Microvascular%20angina%20is%20caused%20by,known%20as%20cardiac%20syndrome%20X and an online search would suggest that cardiac syndrome X has been viewed as a biomedical problem of ‘miscrovascular angina’ for quite some time. The article on the British Heart Foundation’s website describes microvascular angina/cardiac syndrome X as a problem with the smallest blood vessels of the heart and indicates that menopausal women are more likely to suffer from it. In the Nimnuan et al study (I mentioned above), it looks like around 38% of cardiology patients who were initially diagnosed with MUS were found to have been misdiagnosed. Did the JCPMH (or the Royal College of Psychiatrists or the Royal College of General Practitioners individually) ever inform NHS commissioners and health chiefs about the high MUS misdiagnosis rates that were uncovered by the Nimnuan et al study? If not, why not?
I think we desperately need a public inquiry.
Prevalence of ME/CFS
Country Prevalence Population % Comments
Prevalence of ME/CFSWorldwide 17,000,000
Australia 100,000
Canada 561,000 1.9%
Germany 300,000 0.37%
Japan 300,000
New Zealand 20,000 0.45%
Nigeria 0.68%
England and Wales 250,000 0.4%
United States 1,000,000 0.3%
https://me-pedia.org/wiki/Prevalence_of_myalgic_encephalomyelitis_and_chronic_fatigue_syndrome
I have a reminder that goes off every day to remind me of Maeve. I know I go downhill when I crash repeatedly and although there’s more to my decline than stopping PEM it’s a big part, and she’s my reminder because she represents the end result that I fear the most. The place I could one day end up.
Last year I had to go to A and E as an emergency for an eye situation (as recommended by the NHS since it was possible that it could have been every serious and have lead to vision loss, thankfully it didn’t). I am severe and can’t sit up for more than about ten minutes in a wheelchair before I need to lie down for a long time, and I’m limited in how many times I can do that in a day.
They made me sit in the wheelchair in A and E by promising I’d be seen immediately (after a two hour wait in an ambulance), after fifteen minutes I had to lie down on the floor of the waiting room as I was getting weak and intense fatigue…. next to someone else’s blood, and in all the dirt, freezing cold. I the end I was there for five hours, I could feel myself going downhill very badly from around the hour and a half mark and I managed to get the attention of a nurse a couple of times, trying to explain my situation and my worries about my deteriorating condition. No-one listened.
I kept trying to leave but had a canula in my arm and they kept fobbing me off to keep me there, they wouldn’t listen /hear me when I tried to explain, repeatedly what I was having issues with, what would happen to me if I didn’t leave, I was scared that I would crash catastrophically and end up a vegetable.
My mum came to rescue me and tried to advocate for me, they still wouldn’t listen, I was so brain fogged that I didn’t think to take the canula out myself, I was an absolute mess. My whole body was shutting down and I had no way of stemming the deterioration since I was surrounded by noise, bright lights, cold hard floor that meant I couldn’t fully relax my muscles. It was a genuine nightmare. Eventually we got out, my mum got me home in the back of the car (more deterioration), and helped me get sorted – you know dark room, earplugs, lots of water at bedside, and ORS. I slept for 2 days straight. One 24hr period my fitbit showed just 200 steps (that’s going to the loo and moving around in bed as you sleep-usually I’d be on around 100 after a nights sleep so that’s pretty shocking). I slowly moved through the worst and started to recover a bit, it was took a couple of months to stabilise again but it left me with two thirds lower functioning than I’d had before that day, I’ve still not got that back a year later! They took two thirds of my liveable life from me that day and they neither grasp what they’ve done, nor care to make any changes. I am dismissable.
The way the NHS treats ME patient’s is a national disgrace! It’s not even like they were unkind or uncaring…. They simply didn’t understand or believe me. And now I’m living my life significantly sicker than I was. I am absolutely terrified that one day I’ll end up needing to be hospitalised for something and I’ll end up dead like Maeve. My God I hope this inquest gets results. Too many people have died like Maeve, preventably, and too many of us have been damaged by the system, again preventably!
This harrowing account of being made seriously worse by a visit to A & E demonstrates that involvement with the NHS is realistically very dangerous for a person with ME. I am 88 and fortunately have no health issues other than ME/CFS from 1987. But if/when I do, I know that, whatever the health problem was, my treatment as an PWME would undoubtedly risk the kind of consequences suffered by Kate.
Realistically, the best advice for people with ME/CFS and now Long Covid is to avoid going to the doctor, A&E, and any NHS facility if at all possible, and never for symptoms of these conditions – spending a day (or longer!) in bed will be better for your health.
Of course if you have a life-threatening condition – or something that could mean going blind – you are going to have to.
But at the cost of losing so much of already limited function?
It sounds silly, but the old-fashioned ‘just go to bed and stay there until you’re better’ is often the best prescription.
And keep supporting David’s work!