The Times: ME sufferer ‘fell through cracks of dismissive’ NHS, says minister Maeve Boothby O’Neill died after doctors ‘repeatedly misunderstood’ her

[Countrygirl]

https://www.thetimes.com/uk/healthc...cks-of-dismissive-nhs-says-minister-gqntzznkf

ME sufferer ‘fell through cracks of dismissive’ NHS, says minister​

Maeve Boothby O’Neill died after doctors ‘repeatedly misunderstood’ her debilitating condition, said Andrew Gwynne following her inquest​

August 08 2024, 1.15pm

Maeve Boothby-O’Neill, pictured on her 18th birthday, died aged 27 in 2021 after more than ten years of seeing medical professionals
PA
Deborah Archer, assistant coroner for Devon, said Boothby O’Neill died aged 27 at home from natural causes after three admissions to hospital in her last months of life because doctors “were unable to treat the consequences of her severe myalgic encephalomyelitis”.

Archer said because there was no known treatment or cure for ME, which has an unknown cause, it is “not possible to say whether any treatment would have halted the disease process in Maeve, even if she had been treated against her will”.
The assistant coroner said she found none of the clinicians who gave evidence during the two-week inquest “didn’t believe ME was a true illness” and found they were “respectful and compassionate”.

Archer will hold a hearing next month to decide whether she should write a prevention of future deaths report to stop other ME sufferers dying from the disease.
Following the inquest, Andrew Gwynne, minister for public health and prevention, said: “Every patient deserves to have their condition understood and treated to the highest standard, and this is a heart-wrenching example of a patient falling through the cracks.

Shortly before her death Maeve Boothby O’Neill wrote: “I cannot adequately describe how frightening it is it is … to discover that there are no doctors who can help you”
COLLECT
“Maeve and her family were forced to battle the disease alongside the healthcare system which repeatedly misunderstood and dismissed her.”
Gwynne, who suffers from long Covid, a post-viral illness likened to ME, said the government would publish its “final delivery plan” for ME this winter which would “focus on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease”.
Sean O’Neill, the father of Boothby O’Neill and a senior journalist at The Times, said his daughter “didn’t just fall through the cracks, she fell into a huge hole in our healthcare system”.
He said there must be radical change in the treatment of ME “starting with medical education, greatly improved research and specialist care provision for the most dangerously ill”.
O’Neill said: “The inquest heard that none of the medical staff treating her had any training or received any education in treating severe ME.

“Several professionals did not believe her illness was ‘real’. At the end of her life palliative care was delayed because of that disbelief.
“The coroner was told there were no specialist units, no wards, not even a bed anywhere in the NHS for treating severe ME. There were no policies, protocols or guidelines for the treatment of ME in 2021 and there are still none today.
• Sajid Javid: Labour must deliver on ME as patients suffer without a cure
“Imagine that being the case for any other serious, life-limiting or life-threatening illness. Imagine a doctor telling a Parkinson’s sufferer or a cancer patient that they had no idea how to treat their illness.
“This is the very definition of a systemic failing. It is not about the failings or negligence of individuals or a single hospital. It is about the entire system that should protect, or at least try to protect, those with severe ME. The health and social care system failed Maeve. It should not be allowed to fail others in future.”
Sarah Boothby, the mother of Boothby O’Neill and her main carer, said: “Unless NHS England takes responsibility for the many other deaths from ME that have gone unrecorded in England there will be more.”
The inquest heard that by 14 years of age Boothby O’Neill’s diary entries were peppered with references to tiredness she could not understand. By 18, fatigue forced the talented linguist to turn down offers to Russell Group universities. By 23 she was regularly housebound with exhaustion. By 27, she was dead.
Boothby O’Neill died on October 3, 2021, having been admitted to the Royal Devon and Exeter Hospital three times that year and after begging her GP to “please help me get enough food to live”.
She was admitted on March 18 but discharged on the same day when a doctor said he could not “see any medical reason to keep [her] in”.
At the time Mrs Boothby was angered by the failure to give her daughter a nasogastric (NG) feeding tube, placed through the nose into the stomach.
Archer found a failure to alert a doctor with a special interest in ME at the hospital during this admission “caused a delay in recognising how potentially serious the situation could be and caused Maeve to go down a path … which set her on her final downward trajectory”.
“I cannot say these factors contributed to her death, to the standard required, but they are of note,” Archer said.
Boothby O’Neill was admitted again in May but discharged on June 3 when doctors said they were “content” with her nutritional intake and following the wishes of Boothby O’Neill and her mother to leave the “exhausting” hospital environment. She was losing weight at a rate of 2kg a week in hospital and was taking paltry amounts of fluids daily.

Maeve Boothby O’Neill’s father, Sean O’Neill, said the circumstances around her death were “the very definition of a systemic failing”
COLLECT
Archer found that Boothby O’Neill should have stayed in hospital longer on her second hospital admission “where other options could be considered”, because no package of care “outside of 24/7 care in hospital” could be met in the community by her exhausted mother.

“This factor did contribute to her downward trajectory but [going home] was what Maeve and her mother wished for,” Archer said.

“It was because Maeve was so worried about her condition and knew so much about it that she was so firm in her wishes. Because of the unknowns about this disease I cannot make a finding about what would have happened if she stayed in hospital. To do so would be pure speculation.”
Boothby O’Neill continued to worsen at home after her second admission and was admitted in July to the eating disorder ward.
The multidisciplinary team finally agreed to try a NG tube for the first time on July 16 but Maeve, who had been deteriorating badly since the option was raised months earlier, became exhausted when sitting up to use the tube and wasn’t able to successfully feed. Boothby O’Neill was discharged on her wishes and by August was unable to eat any food.
Archer found Boothby O’Neill wasn’t given a prescribed experimental drug during this third admission and there was a lack of understanding among hospital staff into how their actions were reducing “Maeve’s energy envelope”.

But Archer said she was not able to make a finding that these factors caused or contributed to her death because ME “is a disease for which there is no cure and is of unknown [cause]”.
“In other diseases I can say if X was given then Y would have happened,” she said.

Archer said the experimental drug and undisturbed rest at home “didn’t seem to make a lasting difference to her long deterioration”.
With only months left to live, Boothby O’Neill wrote in an essay: “I cannot adequately describe how frightening it is … to discover that there are no doctors who can help you, that they do not even know what is wrong with you, and that in looking for effective alternatives you will be wandering in a wilderness of quacks and blogs.”
The eventual realisation by Boothby O’Neill that doctors could only keep her “alive, not living” led her to turn down a fourth hospital admission and any further attempts at tube feeding. She died at home on October 3, 2021.
Between 2001 and 2021 there were 150 deaths partly or fully attributable to ME or CFS (chronice fatigue syndrome) in England and Wales, according to the Office for National Statistics.

Boothby O’Neill’s devastated parents want her case to be a catalyst that reverses the woeful amount of funding for research into this mysterious illness that affects at least 250,000 Britons.

They want to bury, once and for all, scepticism and disbelief by medical professionals about the condition.

 

[Countrygirl]

https://www.theguardian.com/.../devon-woman-died-from...

Devon woman died from malnutrition due to severe ME, coroner concludes​

Maeve Boothby O’Neill, who lived with ME for more than a decade, was confined to her bed and unable to chew food

• What is ME and why is the NHS approach being criticised?

Fri 9 Aug 2024 17.34 BSTEsther Addley
Share

A young woman who lived for years with severe ME died from malnutrition as a result of her illness, a coroner has concluded.

Maeve Boothby O’Neill, 27, died in October 2021 at her home in Exeter after living with the debilitating disease, also known as chronic fatigue syndrome, for more than a decade.
An inquest in Exeter heard that at the end of her life Boothby O’Neill was confined to bed, unable to chew food and had difficulty drinking because she could not sit up.
At the conclusion of a two-week inquest, Deborah Archer, the assistant coroner for Exeter, Plymouth, South Devon and Torbay, found Boothby O’Neill had died from natural causes “because of severe myalgic encephalomyelitis [ME]”.
Boothby O’Neill had experienced fatigue from the age of 13, which got worse after she completed her A-levels.

The inquest in Exeter heard that Boothby O’Neill was admitted to the Royal Devon and Exeter hospital three times in the year before her death for treatment for malnutrition, but refused a fourth admission after being told there was no treatment to alleviate her condition.
She had been placed on a nasogastric tube for artificial feeding while in hospital but it was removed after complications. An alternative – parenteral feeding through a vein – was rejected because it would have been unsafe in her case.
Less than three months before her death, the inquest heard, Boothby O’Neill wrote to her GP pleading “please help me get enough food to live”, and adding: “I am hungry, I want to eat.”................

 

[Countrygirl]

https://www.theguardian.com/society...s-me-myalgic-encephalomyelitis-nhs-criticised​

​

What is ME and why is the NHS approach to it being criticised?​

An inquiry into the death of Maeve Boothby O’Neill, 27, has shown up widespread failures in how the illness is treated

• Coroner: Devon woman died of malnutrition due to severe ME

Fri 9 Aug 2024 18.23 BSTAndrew Gregory Health editor
Share
Maeve Boothby O’Neill had myalgic encephalomyelitis (ME) and died at home in Exeter in October 2021 at the age of 27.
Poor NHS care for ME was highlighted at her inquest. For many with the condition, that did not come as a surprise: patients, families and charities have raised concerns for years. They hope this will mark a turning point in the way patients are treated.
So what is ME, how does the NHS treat the condition and what changes are needed?

What is ME?​

Myalgic encephalomyelitis, also called chronic fatigue syndrome or ME/CFS, is a long-term condition that can affect different parts of the body.
There are no official figures but Action for ME, a charity, estimates 250,000 people are affected in the UK. The inquest heard the true number may be as high as 750,000.

What are the symptoms of ME?​

There are four main symptoms of ME/CFS, according to the NHS.
The first is feeling extremely tired all the time. Boothby O’Neill had experienced fatigue since the age of 13. This got worse after she completed her A-levels, and she later struggled to maintain “any normality due to fatigue”, the inquest heard.
The second is difficulty with thinking, concentration and memory, which is sometimes referred to as brain fog.
Sleep problems, such as feeling exhausted when you wake up, insomnia, sleeping too much or feeling like you have not slept properly are another symptom.
The fourth is symptoms getting worse after physical or mental activity and sometimes taking weeks to get better. This is sometimes called post-exertional malaise (PEM).

How does the NHS diagnose ME?​

There is no specific test for ME/CFS. It can only be diagnosed after a doctor assesses the symptoms and rules out other conditions that may be causing them.
If you are being assessed for an ME diagnosis, GPs should ask you about your symptoms and medical history. You may also have blood and urine tests.

How does the NHS treat ME?​

There is no cure at present. However, there are treatments that may help patients manage the condition and relieve symptoms.
They include cognitive behavioural therapy (CBT) and medicine to help with sleep problems and pain. Another option is energy management: patients are given advice about making the best use of their energy without making their symptoms worse.

Speaking on condition of anonymity, the doctor added: “One of the wider problems is that many of the doctors working in the NHS today were taught that people with ME have got a functional rather than physical illness. The problem is, that generation was actually taught that this is not a biological illness. We now know that is wrong.

“We have a host of information demonstrating that this clearly is a biological illness with biological underpinnings, and we’re in a position to start developing diagnostic tests and hopefully have a cure in the future. But that generation are the ones currently setting medicine policy and that’s a significant problem.”

 

[Countrygirl]

Channel 4 news.

27-year-old died from malnutrition due to severe ME, inquest finds​

 

[Countrygirl]

https://www.thenorthernecho.co.uk/news/national/24509726.woman-died-malnutrition-due-coroner-finds/

https://www.standard.co.uk/news/crime/exeter-doctors-plymouth-andrew-gwynne-b1175734.html

 

[Countrygirl]

https://www.thetimes.com/uk/healthc...-painful-now-lessons-must-be-learnt-d0g6c50fk

Reliving my daughter’s death was painful, now lessons must be learnt​

With the conclusion of Maeve’s inquest, the NHS must ensure the plight of thousands of other ME suffers is eased by proper care and treatment​

Sean O’NeillFriday August 09 2024, 7.40pm,

That’s just the way it is: a fact-finding exercise about a death conducted by order of the state. The examination and re-examination of medical records, emails between doctors and official records. What they did and what they didn’t do. What else could have been done?

The detailing of the horrible facts of her physical deterioration was painful and shocking. But it was the moments when Maeve, who died aged 27 from severe ME in October 2021, came back to life that brought the tears.

We heard her voice in text messages or emails or snippets of writing. Like the message a few days before her death when she declined a phone call from her GP because she wanted time with her mum: “I wanted her company when she got back because I feel so sad about so much”.

The emotional burden on Maeve Boothby O’Neill’s loved ones of watching her inquest has been enormous
Or the note she sent to that lovely GP, who tried so hard to help in the face of a health and social care bureaucracy that simply does not understand the disease that killed Maeve: “I only wish I could have been a more treatable patient.”

The GP was so distressed by Maeve’s death she has not worked in the NHS since and felt unable to give evidence because of the damage that might do to her mental wellbeing.

“I had genuinely been optimistic earlier in the case,” she said in a written statement. “It was not that I previously thought the NHS was infallible, but that where systems failed or where the NHS didn’t provide, I was used to marvellous clinicians stepping up to fill the gaps and somehow muddling through.”
Little did we know back in 2021 but the GP was that stand-out doctor, the one who took risks, went the extra mile, pushed as hard as she could. The coroner said it was regrettable that no doctor at the Royal Devon and Exeter Hospital had taken charge of Maeve’s case with the same determination when she was admitted.

It seems to me from the evidence at the inquest that other doctors, healthcare staff and social workers — although concerned, dedicated and well meaning — were constrained by rigid systems, ignorance of the disease, a lack of leadership and an institutional preference for inaction over action.

The public health minister, Andrew Gwynne, who has long Covid himself and understands post-viral illness, has expressed his sympathies and says Maeve’s case was “a heart-wrenching example of a patient falling through the cracks”.

In her lengthy and considered conclusions the coroner, Deborah Archer, concluded that Maeve died from malnutrition caused by severe ME. That basic finding is an important recognition of the seriousness of this neglected, poorly understood and sometimes fatal condition.

More importantly Archer expressed the hope that important lessons can be learnt for the future treatment of people with ME, lessons that may prevent what one witness referred to as “more Maeves”. Lessons that might ease the plight of the thousands who are housebound and/or bedbound, living shadow lives dependent on their families for care and sustenance.

The learning must be done not just by one set of doctors or one hospital but by the entire NHS and the medical profession. In my view there are four areas where urgent improvements are needed:

Education

There is a need to dispel the deeply entrenched view, held especially by older medics, that ME is a psychological condition, that somehow the patient is only ill because they believe themselves to be ill.

ME was first recognised by the World Health Organisation 55 years ago and there have been UK guidelines for its treatment since 2007. Yet not one of the professional witnesses who gave evidence at Maeve’s inquest had had any training or education in ME or treating ME patients. Even the two witnesses who were characterised as “experts” were self-taught.

An education package, which began development when Sajid Javid was health secretary in 2022, must be rolled out by medical schools immediately. Wes Streeting and his ministers can apply pressure on the Medical Schools Council to make sure that happens.

Specialist care​

Streeting should also move to create a specialist unit for the small number of life-threatening severe ME cases that arise every year. The inquest was told there is no unit, nor ward, not even a bed, anywhere in the NHS for the specialist care and treatment of severe ME. The medical director of the Royal Devon and Exeter Hospital, where Maeve was treated, called for urgent action “at the highest level”.

This would be expensive and resource-heavy; severe ME patients are ultra-sensitive to noise, light and touch, hospice-style nursing, as opposed to the bustle and noise of hospitals, is required. Yet even before that big step, significant improvements could be made by developing specific artificial feeding protocols for ME sufferers at risk of malnutrition. We were repeatedly told at the inquest it was too “risky” to tube-feed Maeve, yet the risks of not feeding her don’t seem to have been adequately considered. The coroner has been contacted by ME patients, from the UK and overseas, explaining how their lives have been saved by successful tube feeding. The Royal Devon and Exeter Hospital has also changed its feeding policies to assist another young woman with severe ME.

Research​

There is no curative treatment for ME and no conclusive diagnostic test, largely because there has been a woeful lack of research into the condition. A small number of scientists around the world have taken on small-scale studies out of personal passion or interest. Most are examining the impact of viral infections and what is different about ME patients in the way their bodies react to viruses. There appears to be significant overlap with long Covid, another post-viral condition, or range of conditions, that is not fully understood.

Government should step up ME funding. From 2015–2020, just £6 million was committed in funding for ME research in the UK through the National Institute for Health and Care Research and UK Research and Innovation, compared with £53 million for Parkinson’s disease and £22 million for multiple sclerosis. Funding biomedical research would be a drop in the ocean compared with the huge economic cost of having so many people excluded from the labour market.

But this is not just an appeal to governments. Where is Big Pharma? Where is philanthropy? There is a big prize to be won here.

Women’s health​

The first research results from the Decode ME project at the University of Edinburgh confirmed that women are five times more likely to develop ME than men and to experience more severe symptoms than men.
Might the fact this is a disease that predominantly affects women explain the dismissive attitude of medics? For centuries health conditions that afflicted women were put down to “hysteria”, a term derived from the ancient Greek theory of the “wandering womb”.

Henrietta Hughes, England’s first patient safety commissioner, told the BMJ recently that NHS patients raising concerns were too often passed off as “difficult women”.

Hughes added: “The patient’s anecdote is the canary in the coalmine. It’s the thing that tells us there’s something going wrong. But too often we hear about patients who have raised concerns being gaslighted, dismissed, and fobbed off.”

That was Maeve’s experience for many years. It is the experience of many more ME patients who have been told it’s “all in the mind”, recommended wholly inappropriate exercise programmes and abandoned (in Maeve’s words) to a “wilderness of quacks and blogs”.

In 2022 the government published a Women’s Health Strategy that did not mention ME. It is time to rectify that and to make ME part of the gender health gap agenda.

 

[Countrygirl]

BBC Spotlight report on Maeve's inquest with an interview with Sarah and Rosie Barrett, Alice's sister,

 

[southwestforests]

Hughes added: “The patient’s anecdote is the canary in the coalmine. It’s the thing that tells us there’s something going wrong. But too often we hear about patients who have raised concerns being gaslighted, dismissed, and fobbed off.”

Yep. Has happened to me. More that three times. And during the six years I was married saw a doctor do that to my wife.
And do it to such a degree that when Kathy said to him that this thing in her body and her body's actions and reactions was changing, he looked her in the eye and said, "Bodies do not change." Literally. Just like that, those words in that order followed by a full stop.
Excuse me???????
Yeah, I wasn't exactly that office's favorite husband.

 

[southwestforests]

That bit brings to mind that fortunately for me when diagnosed in 2006 it was at a teaching hospital and they were teaching that ME/CFS was indeed a thing and it was biological,

Speaking on condition of anonymity, the doctor added: “One of the wider problems is that many of the doctors working in the NHS today were taught that people with ME have got a functional rather than physical illness. The problem is, that generation was actually taught that this is not a biological illness. We now know that is wrong.

“We have a host of information demonstrating that this clearly is a biological illness with biological underpinnings, and we’re in a position to start developing diagnostic tests and hopefully have a cure in the future. But that generation are the ones currently setting medicine policy and that’s a significant problem.”

Back to that time, at one follow up appointment the doctor said that there was potential for it to someday be discovered that ME/CFS and fibromyalgia were not their own independent things but were actually effects of a deeper cause within the body's processes.
For reasons I still do not comprehend Kathy was absolutely irate at that and walked out, never to go to that doctor with me again.
What in what the guy said went outside of the realm of logical rational scientific possibility?

People can be strange ...
Both doctors and patients can be people ...
Therefore ...

 

[Countrygirl]

https://www.telegraph.co.uk/news/2024/08/09/me-patient-fight-nhs-disease-maeve-boothby-oneill/

ME patient had to fight NHS alongside her disease, says health minister​

Inquest into death of Maeve Boothby O’Neill found that a ‘lack of understanding by medical staff’ led to failings in her treatment​

Patrick Sawer, Senior News Reporter 9 August 2024 • 8:51pm

A 27-year-old who died after suffering from myalgic encephalomyelitis (ME) for years was forced to battle the NHS as well as the disease, a health minister has said.
Maeve Boothby O’Neill died at home in October 2021 after years of slow decline from severe ME, the chronic fatigue disease. The illness, which she contracted in her teens, left her unable to function normally, stand or sit up, feed herself, chew or swallow.

An inquest into her death found that a “lack of understanding by medical staff” led to failings in the treatment Ms Boothby O’Neill received, with her family struggling to find her proper care from the NHS.
Deborah Archer, assistant coroner of Devon, ruled that Ms Boothby O’Neill had died of malnutrition caused by severe ME after her hospital was unable to treat the condition.
She said there had been “failings” in the way medical staff consulted each other over the best treatment for Ms Boothby O’Neill to receive, but that this is unlikely to have changed the ultimate outcome of her condition.

The Government has now pledged to improve the care offered to ME patients.

‘Repeatedly dismissed’​

Andrew Gwynne, the minister for public health and prevention, said in response to Friday’s findings: “My deepest sympathies go out to Maeve’s family and friends in this tragic case. Every patient deserves to have their condition understood and treated to the highest standard, and this is a heart-wrenching example of a patient falling through the cracks.
“Maeve and her family were forced to battle the disease alongside the healthcare system which repeatedly misunderstood and dismissed her.”
Ms Boothby O’Neill’s father, Sean O’Neill, a journalist at The Times, said his “bright, loving and beautiful” daughter “fell into a huge hole in our healthcare system” and that urgent lessons had to be learnt by the NHS.
He said: “The inquest heard that none of the medical staff treating her had any training or received any education in treating severe ME. Several professionals did not believe her illness was ‘real’. At the end of her life palliative care was delayed because of that disbelief.”

Sean O'Neill says his daughter 'fell into a huge hole' in the healthcare system Credit: Lee Thomas

The two-week inquest heard there is no known cause or cure for the disease and no established or accepted way of treating it.

Ms Boothby O’Neill – who the inquest found had “full capacity” to make her own decisions – was admitted three times to Royal Devon & Exeter Hospital (RD&E) over the course of 2021, but refused a fourth admission because no treatment was available to improve or even alleviate her condition.
Handing down a narrative verdict, Ms Archer said: “There was a lack of understanding within the body of staff who treated Maeve in how her envelope of energy was being depleted by the way she was being treated. But it’s a disease with no cure. It’s not possible for me to say on the evidence if any treatment would have helped.”

The inquest heard that clinicians at RD&E disagreed about giving Ms Boothby O’Neill vital nutrition through nasal nasogastric (NG) or nasojejunal tubes because of the danger she could choke or suffer a fatal infection, as she had no energy to sit up.

Some felt the benefits would outweigh the risk while others feared it could hasten her death.
Similar doubts were expressed by some doctors with regards to fitting Ms Boothby O’Neill with a total parenteral nutrition (TPN) tube to administer nutrients straight to the heart, which carried the risk of sepsis.
Ms Archer criticised the failure to alert the RD&E’s own ME specialist that Ms Boothby O’Neill had been admitted in March 2021 and was seriously ill.

‘Final downward trajectory’​

She said all the clinicians were “doing their best to help” but that this failure “resulted in Maeve using up her precious energy envelope which set her on a final downward trajectory”.
However, she added: “A disease for which there was no cure was not allowing her to take food and drink and the outcome may have been the same however it was administered.”
Ms Archer also criticised the decision to discharge Ms Boothby O’Neill from RD&E in early June 2021, stating: “Maeve should have stayed in hospital on June 3, when other options could have been considered.” She added that home care was “not what she needed” and that this “contributed to her downward trajectory”.

However, the coroner added: “It was what Maeve and her mother wanted because she could not tolerate the hospital environment any longer. To say what would have happened if she’d stayed in hospital would be mere speculation.”

During her third admission, Ms Boothby O’Neill began vomiting when being fed by NG syringe and eventually refused to take it.
Ms Boothby O’Neill, who was described by Ms Archer as “bright, opinionated, self-aware and intelligent”, refused to be readmitted to hospital shortly before her death to receive intravenous TPN feeding, as “she did not want simply to be kept alive” with no prospect of being cured or even getting better.
Ms Archer will hold a hearing at the end of September to consider whether to produce a Prevention of Future Deaths of Report containing wider recommendations about the NHS’s treatment of patients suffering from ME.

‘The very definition of a systemic failing’​

Mr O’Neill said he hoped that his daughter’s death would lead to fundamental changes in the way the condition was viewed by doctors and the medical establishment.
He said: “The coroner was told there were no specialist units, no wards, not even a bed anywhere in the NHS for treating severe ME. There were no policies, protocols or guidelines for the treatment of ME in 2021 and there are still none today.

“Imagine that being the case for any other serious, life-limiting or life-threatening illness. Imagine a doctor telling a Parkinson’s sufferer or a cancer patient that they had no idea how to treat their illness.
“This is the very definition of a systemic failing. It is not about the failings or negligence of individuals or a single hospital. It is about the entire system that should protect, or at least try to protect, those with severe ME.”

Mr O’Neill added: “The health and social care system failed Maeve. It should not be allowed to fail others in future. There must be radical change in the treatment of ME – starting with medical education, greatly improved research and specialist care provision for the most dangerously ill.”

An NHS spokesperson said: “Our thoughts remain with Maeve’s family.
“The powerful testimonies given as part of Maeve’s inquest make clear that improvements are needed within the health service and across society to increase understanding and awareness of ME/CFS [Chronic Fatigue Syndrome], and to help ensure that patients and their families are listened to and receive the care they need, in line with NICE guidance.
“Over the coming months, we will work closely with the government, patients and clinicians on the final delivery plan for ME/CFS to achieve these ambitions.”

 

[Countrygirl]

https://www.bbc.co.uk/news/articles/czrgmdv4z0go

Treatment changes urged after ME patient's death​

Image source,Family handout/PA Media
Image caption,
Maeve Boothby-O'Neill had been admitted to hospital three times
Jen Smith
BBC South West health correspondent

• • Published
    9 August 2024

Maeve Boothby-O'Neill, 27, suffered from severe chronic fatigue syndrome for a decade before she died at home in October 2021.

An inquest in Exeter heard she had been admitted to the Royal Devon and Exeter Hospital three times that year for treatment for malnutrition.
The hearing focused on the last few months of her life, by which time she was confined to bed, unable to chew food and had difficulty drinking because she was not able to sit up.
Devon coroner Deborah Archer concluded Miss Boothby-O’Neill had died from natural causes "because of severe myalgic encephalomyelitis (ME)".

"In conclusion there is no known treatment of ME," she said.
"The reality of this case is it is not possible for me to say if any treatment could've halted her decline - I hope lessons will be learned in the hope future deaths can be prevented."

Image caption,
Sarah Boothby called for institutional change in ME care

Dr Lucy Shenton, who cared for Miss Boothby-O'Neill, told the inquest doctors needed more help to treat patients with ME.

"Regarding severe ME, there needs to be more funding and research into ME to provide the evidence and guidelines for clinicians to work from," she said.
"There needs to be somewhere within the NHS providing specialist care for patients with severe ME and an easy mechanism to access that provision."
Miss Boothby-O’Neill's mother, Sarah Boothby, told the inquest her daughter's death was "premature and wholly preventable" as malnutrition in cases of severe ME was "common".

 

[Countrygirl]

https://www.theguardian.com/society/article/2024/aug/10/me-patients-maeve-boothby-o-neill-inquest

‘I’ve been tired since I was 13’: ME patients hope harrowing inquest will change perceptions​

Maeve Boothby O’Neill’s parents tell of desperate efforts to find help and their desire to improve treatment for others​

Steven Morris

In January 2021, Maeve Boothby O’Neill took stock and summed up her position. “I’ve been tired since I was 13,” she wrote. “When I was 18, I was diagnosed with ME/CFS. I hoped I would finally get treatment and recover my health. I had every potential to be an asset to humanity and hoped and intended to advance the cause of human flourishing.”

Maeve, a bright, diligent, determined young woman, and her loved ones did their best over the years to get help but the treatment – and the fundamental understanding of myalgic encephalomyelitis/chronic fatigue syndrome – just was not available.

She wrote: “I cannot adequately describe how frightening it is to discover there are no doctors who can help you, they do not even know what is wrong with you. I am fighting for a chance to live.”
By March 2021, her ME was so severe that she was unable to sit up, hold a cup to her lips or chew. She was admitted to hospital, desperate to find a way of taking on food and drink. Despite the pain she was in, she clearly still wanted to live but, in the end, was hardly able to move, communicate or tolerate light, sound or touch – not even a loving hug. She died at home in a garden flat in Exeter on 3 October 2021, at the age of 27.

On Friday, Deborah Archer, the assistant coroner for Exeter, Plymouth, South Devon and Torbay, concluded that Maeve had died from natural causes “because of severe myalgic encephalomyelitis (ME)”.
During the harrowing two-week inquest, her parents, Sarah Boothby and Sean O’Neill, described their increasingly desperate efforts to find help for her from doctors and their desire to try to improve treatment for people in her position, keenly watched by ME campaigners and patients with the illness.

Maeve Boothby O’Neill had dreamed of travelling after school

The hope is that her story will come to be seen as a landmark case that will lead to change in the way people with ME are treated and perceived.

Everyone agrees Maeve was an exceptional person. She was a vivacious child, a brilliant student and linguist with a deep interest in world affairs who dreamed of travelling after school.

As a young girl, she was robust and energetic. It is not clear what caused her ME but her tiredness began after she and her mother caught a mild virus when Maeve was 12.

Her father, in his statement to the inquest, said: “I remember picking her up one day from South Dartmoor college in a state of some distress; she had become dizzy and fainted while cross-country running.”
It was hard to find what was wrong. A paediatrician told Maeve her symptoms were “all in her mind”. She once asked her mother: “Do you think I’m making it up?”

Despite her persistent tiredness, she did well at school and had offers for Russell Group universities. In 2011 she was finally diagnosed at a Bristol hospital as having ME. She was unable to take up a place at university and over the next 10 years steadily declined.

She was determined to be a good patient and found out everything she could about ME. But, her father said: “Medicine and medics did not know what to do. Maeve encountered treatments that made her worse, such as exercise programmes, delayed diagnoses, ignorance, apathy and stigma.

“The medical orthodoxy is that ME is a behavioural problem or a psychological illness and that belief is deeply rooted in the NHS despite growing scientific evidence that it is a physical illness.”

During the inquest, Dr David Strain, an honorary consultant at the Royal Devon and Exeter foundation trust, who was involved in Maeve’s treatment, said the disease had been stigmatised because it did not have a diagnostic test.

He said: “Even today there are people who have been through the historic medical schools that didn’t recognise this as a physical disease. That’s a travesty.”

Strain also said there was nowhere to treat people with ME. “I don’t think there is a ward anywhere in the country that is appropriate to manage ME patients,” he said.

Maeve became increasingly housebound, isolated and unable to take care of herself. Her mother had to give up her career to help her.

Maeve had begun writing a series of novels set on Dartmoor, where she had grown up

Yet Maeve was still ambitious. She began writing a series of novels set on Dartmoor, where she had grown up. She seemed to draw on her experiences to describe the loneliness of one of her characters, a bereaved woman: “The great grief she carried for the irretrievable loss of others but also of her former self was a wound that could not heal.”

By March 2021, it was becoming very difficult for her to eat or drink and she told her mother: “I need someone to know how unwell I am.” She was taken to the Royal Devon and Exeter hospital (RDH) but discharged the same day.

Her father was in hospital at the same time, being treated for cancer. He said: “It seems a harsh thing to say but she would have been better off in the hands of the NHS if she had had cancer.
“She and I were both in hospital around the same time. I was having state-of-the-art keyhole surgery. My treatment was swift, skilful and effective. Maeve presented as acutely ill – immobile, weak, in pain and unable to digest food and in danger of malnutrition – only to be told there was nothing that could be done for her. Within hours of her admission, she was bundled back into an ambulance and sent home.

“In my view, it was deeply discriminatory. Had Maeve presented with those symptoms but with a diagnosis other than ME, I believe she would have been treated very differently.”

In June 2021 Maeve wrote to her GP, Dr Lucy Shenton: “I really need help with feeding. I am hungry. I want to eat. I have been unable to sit up or chew since March. Please help me get enough food to live.”
Shenton, who worked hard for Maeve, was not well enough to give evidence to the inquest in person because she had suffered post-traumatic stress disorder over the case. But in a statement read out in court, Shenton summed up the issues neatly: “There needs to be more funding and research into ME to provide the evidence and guidelines for clinicians to work from.

“There needs to be somewhere in the NHS that provides specialist care for patients with severe ME and an easy mechanism to access that provision. There needs to be a way for the patient’s voice to be heard in meetings. Clear systems with appropriate safety nets ought to be in place.”

Maeve was admitted to hospital twice but attempts to help her to eat and drink failed. “Maeve was starving to death,” her mother said. It wasn’t that she did not want to eat. “She had a good appetite. She was hungry all the time, enviously asking me what I would be eating, and making menu suggestions for meals she would have eaten if she could.”

Maeve made it clear she wanted to be discharged from hospital. Her mother said: “If she had to die from starvation with severe ME, she wanted it to be in the familiarity of home and the care of those she loved.”
O’Neill told the inquest it had been difficult to get his daughter the palliative care she needed as she became critically ill because there was still suspicion that her illness was invented. Boothby said she died “in the company of those she loved”.

Maeve Boothby O’Neill ‘encountered treatments that made her worse’, said her father
Sonya Chowdhury, the chief executive of Action for ME, said she hoped Maeve’s case would prompt change. She said: “It is clear that the NHS has not yet developed the framework to deliver effective support to people with severe and very severe ME.

“There is no clear pathway for care and this is compounded by a lack of understanding that some healthcare professionals have and, as we have seen in situations like Maeve’s, stigma. There is no excuse for this.

“The scientific understanding for ME is lacking as a result of major underinvestment in research over the years but that is no excuse for what we have heard in Maeve’s situation.

“The overarching theme emerging is the absence of anyone with knowledge of ME and the reluctance of anyone to take responsibility. It would be too easy to blame any one individual; this is a system-wide problem and one that the NHS has responsibility to take leadership of to prevent further harm.”
Action for ME is calling for the government to release a delivery plan on ME/CFS initially promised by the Conservative government in 2022 but delayed multiple times.
Chowdhury called for more research funding. She said: “We would like the government to urgently accelerate strategic investment in ME research to ensure it achieves a commensurate level with other disease areas and identify treatments.

“There is a clear and unmistakable stigma around ME that stems from a lack of understanding. Still so little is known about this disease and its causes and we desperately need to see more research commissioned to address this.”

She said there needed to be “proper implementation” of the Nice guideline for ME/CFS, including the inclusion of ME in training.
The last words should go to Maeve. In her January 2021 statement she wrote: “My only hope lies in biomedical research, and adequate funding for this requires the medical establishment to set aside the inaccurate idea that behavioural treatments can cure ME.” She added: “This is not political, it is existential.”

 

[sunshine44]

Oh Maeve.
And all who have suffered to extreme lengths.
Words simply cannot suffice.

Thank you to her very brave family.

 

[southwestforests]

That bit,

doctors ‘repeatedly misunderstood’ her

Strikes me in the right here and right now
as being very much along the lines of,
"Oh, I didn't understand that diesel trucks use diesel fuel."

 

[hapl808]

Strikes me in the right here and right now
as being very much along the lines of,

I always read physicians 'misunderstood' as, "We just thought you were a typical patient, AKA a lying liar. We misunderstood that you were actually telling the truth. This will not change our future behavior, though."

 

[Viala]

There is no misunderstanding here. These people are murderers and they are laughing in everyone's faces with cheap gaslighting.

She wanted to eat and was starved to death, what did they not understand? She literally said she was hungry and asked them to find a way to get food into her.

How much longer people will play with their silly excuses? There is no place for being polite or tolerant when they kill patients. People need to wake up and see what's really going on. It's not only medical care.

 

[Countrygirl]

 

[Down but not out!]

I think 'fell through the cracks' is putting it generously. When there is a crack in something, it implies there is some solid material either side of it. I suppose we could describe the Atlantic Ocean as a mere 'crack' between the continents of America and Eurasia on that basis.

This isn't the first time the National Hopeless Service has let someone with ME down in this way and I fear it won't be the last.

My heart goes out to Maeve and her family.

 

[Blazer95]

That bit,



Strikes me in the right here and right now
as being very much along the lines of,
"Oh, I didn't understand that diesel trucks use diesel fuel."

its not missunderstanding at all. doctors are ignorant and arrogant.
doctors are activily and purposfully harming ME patients because of their delusional belief that its psychosomatic and refuse to treat anyone.

they have to be forced by law and otherwise locked up. other then that nothing will change.

it has to be this radical.

 

[Bronc]

The NHS minister is completely wrong saying Maeve fell through the cracks. What utter BS, making excuses for the institutional neglect and failures of the NHS and the medical establishment. I'm tired of the gas lighting of politicians and the medical establishment. Pious words mean nothing. We need alot of extra money to be invested into biomedical research not austerity which is what the Labour government is shamefully promising.