Media articles on Maeve Boothby O'Neill's inquest July 2024:Doctors held ‘outdated’ views about ME

[BrightCandle]

A lack of independent clinical scrutiny leaves the door open for lawyers to put the reputation of the health service above patient safety​

This is something I felt accutely as the evidence base was almost entirely the NHS and local authority defending itself putting its version of events forward. In this case we had Dr Weir involved with alternative plans but since that was completely dismissed and he wasn't allowed near the patient I wonder what weight the coroner will put on his expertise. The coroner learnt some about ME but not from the doctors, almost exclusively from Sarah and somewhat Dr Weir. In ME's case the expertise is all with the patients, even our allied doctors are often have big gaps in the extent of their knowledge of the symptoms and impact of the disease.

I guess we will find out in a few months(!) what the ruling is and whether Dr Weir and Sarah's testimony is enough to challenge the NHS's version of events. I think the doctors repeatedly betrayed their statements that they didn't know whether ME was Psychological in the way they behaved with Maeve, what they did and tried to push and also their language around her "believing she couldn't...". This language is the sort of thing as an ME patients we are acutely tuned to, we are used to it from doctors but will the coroner pick it up as the subtle lie they all told about what they were told to say by their lawyers about knowledge of the disease. Shouldn't the fact that even now none of those doctors can list the definition of the disease and its diagnosis be a good sign that actually lack of knowledge did impact things and still would?

I worry, having seen the accounts of the pre-inquest too I am not sure what the Coroner believed then and does now about the systemic nature of the problem and how this impacted on the case. Sarah did an admirable job getting this into the case as did Sean but it really fell entirely on the parents to present this side of the case and its not got the same authority behind it as a result, they couldn't call an authority on it who wasn't involved in Maeve's care and that feels unbalanced to me. Who would you call on the systemic issues other than charities or maybe an MP?

 

[southwestforests]

This language is the sort of thing as an ME patients we are acutely tuned to, we are used to it from doctors
...
Shouldn't the fact that even now none of those doctors can list the definition of the disease and its diagnosis be a good sign that actually lack of knowledge did impact things and still would?

Those two bits are very important.

 

[hapl808]

Their lying and dissembling is obvious.

"She's crazy and there's nothing physically wrong with her. She could eat if she wanted, she's just depressed. Oh, you say she actually died? Well, of course by 'nothing physically wrong' I only meant that she also might have depression. I definitely took her complaints seriously. On the case notes where I wrote FAKER and drew a caricature of myself rolling my eyes and sent a copy to my colleagues - I certainly didn't mean she was faking her symptoms."

 

[Countrygirl]

https://www.theguardian.com/society...cvcRpDOPsoKUbDVSMQ_aem_uCPFJv204hsdI4PrAdSE8g

Hugs were too painful for ME patient before she died, mother tells Exeter inquest​

Maeve Boothby O’Neill, 27, died in October 2021 after becoming so weak she could not sit up, eat or drink

A woman who died with severe ME was desperate for a “loving hug” as she neared the end of life but her hypersensitivity made all touch “excruciatingly painful”, her mother has told a coroner.

Giving evidence at the inquest of 27-year-old Maeve Boothby O’Neill, her mother, Sarah Boothby, described her daughter’s efforts to stave off starvation and her desire to live but claimed medical staff did not have the knowledge or resources to help her.


Maeve’s father, Sean O’Neill, said it had been difficult to get their daughter the palliative care she needed as she became critically ill because there was still suspicion that her illness was invented.........................

 

[Countrygirl]

https://www.bbc.co.uk/news/articles/cger8kdgdldo

Daughter's death 'wholly preventable', says mother​

A mother whose daughter had myalgic encephalomyelitis (ME) said her death was "wholly preventable" and her local hospital failed in its duty of care.
Maeve Boothby-O'Neill, 27, had the condition since she was 13 and was being treated at the Royal Devon and Exeter Hospital before she died at home in Exeter on 3 October 2021.
Her mother, Sarah Boothby-O'Neill, told the inquest in the city: "I believe the evidence shows Maeve is likely to have died from malnutrition and dehydration because she had severe ME.
"I therefore believe her death was both premature and wholly preventable."

'Failed to save'​

She said to the coroner: "I am hoping the inquest into her death will explain how she died.
"She did not want to die.
"Death from ME is extremely rare.
"Malnutrition in severe ME is common."
The hearing heard Miss Boothby-O'Neill had been admitted to hospital three times for treatment for malnutrition.
Her mother said: "I am hoping the inquest will try to ascertain how three separate admissions to the Royal Devon and Exeter Hospital failed to save her life."

 

[Countrygirl]

https://www.somersetcountygazette.c...nic-sufferer-knew-starve-death-inquest-hears/

Chronic ME sufferer knew she would starve to death, inquest hears​

A woman suffering from severe chronic fatigue syndrome knew she was going to starve to death, an inquest has heard.


Maeve Boothby-O’Neill, 27, had suffered with myalgic encephalomyelitis (ME) for a decade and was being treated at the Royal Devon and Exeter Hospital before she died at home in October 2021.

An inquest in Exeter heard that Miss Boothby-O’Neill had been admitted to the hospital three times that year for treatment for malnutrition.

The hearing is focusing 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.

It seemed to me the hospital did not respond to the severity of Maeve’s presentation and failed in its duty of care and missed important opportunities to preserve the right to life

Sarah Boothby
Her mother, Sarah Boothby, said her daughter’s death was “premature and wholly preventable” as malnutrition in cases of severe ME was “common”.

“I believe the evidence shows Maeve is likely to have died from malnutrition and dehydration because she had severe ME,” she said...............................................................

 

[Countrygirl]

https://www.itv.com/news/westcountr...-41fpiZcKe0bMRLe4Q_aem_QneWVFk5uLhKdKV-9uhorw

Maeve Boothby-O'Neill: Mum fears daughter's ME death could 'too easily' happen to someone else​

The mother of a Devon woman who suffered from ME says she believes the events leading to her daughter's death could "too easily" happen to someone else.

Maeve Boothby-O'Neill died at her home in October 2021, aged 27. The daughter of Times journalist Sean O’Neill, had myalgic encephalomyelitis (ME).

Also called chronic fatigue syndrome, ME is a long-term condition that can affect different parts of the body. According to NHS England its cause is unknown, but the most common symptom is extreme tiredness.

Maeve's mother, Sarah Boothby, gave evidence at an inquest into her death on Thursday 1 August. It follows evidence from doctors who saw Maeve in the months before she died.

On Wednesday 31 July, Dr Thomas Fox told the inquest he'd never seen an ME patient with such severe symptoms as Maeve.

Ms Boothby said: "I’m hoping the inquest will explain how she died. She wasn’t expected to die, didn’t want to die.

"Death from ME is extremely rare - malnutrition is common. I believe she died from malnutrition and dehydration. I believe her death was premature and highly preventable.....................

 

[Countrygirl]

​

https://www.lancashiretelegraph.co....auwaV_T-BQQ8J4svQA_aem_gvLJGXVn0cleRzfJ4Mz_BA​

Chronic ME sufferer knew she would starve to death, inquest hears​

 

[Countrygirl]

https://www.independent.co.uk/news/health/maeve-boothby-oneill-exeter-inquest-b2589697.html

Chronic ME sufferer knew she would starve to death, mother tells inquest​

Maeve Boothby-O’Neill was being treated at the Royal Devon and Exeter Hospital before she died at home​

Rod Minchin
2 hours ago

Maeve Boothby-O’Neill (Family Handout/PA) (PA Media)

Sign up for our free Health Check email to receive exclusive analysis on the week in health​

Maeve Boothby-O’Neill, 27, had suffered with myalgic encephalomyelitis (ME) for a decade and was being treated at the Royal Devon and Exeter Hospital before she died at home in October 2021.

An inquest in Exeter heard that Miss Boothby-O’Neill had been admitted to the hospital three times that year for treatment for malnutrition.

The hearing is focusing 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.
Her mother, Sarah Boothby, said her daughter’s death was “premature and wholly preventable” as malnutrition in cases of severe ME was “common”.

 

[Countrygirl]

https://jerseyeveningpost.com/.../chronic-me-sufferer.../

Chronic ME sufferer knew she would starve to death, inquest hears

A woman suffering from severe chronic fatigue syndrome knew she was going to starve to death, an inquest has heard.

Maeve Boothby-O’Neill, 27, had suffered with myalgic encephalomyelitis (ME) for a decade and was being treated at the Royal Devon and Exeter Hospital before she died at home in October 2021.

An inquest in Exeter heard that Miss Boothby-O’Neill had been admitted to the hospital three times that year for treatment for malnutrition.

The hearing is focusing 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.
It seemed to me the hospital did not respond to the severity of Maeve’s presentation and failed in its duty of care and missed important opportunities to preserve the right to life
Sarah Boothby

 

[southwestforests]

https://www.independent.co.uk/news/health/maeve-boothby-oneill-exeter-inquest-b2589697.html

That bit,

Miss Boothby-O’Neill’s father, Sean O’Neill, told the inquest he believed doctors thought ME was a psychological illness.

“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,” he said.

“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.

Remember, their mindset even here in the USA is and has long been,
when THEY don't know what to do, YOU have a mental illness.

Mr O’Neill, a journalist with The Times, added: “I have little faith in the ability of institutions to learn lessons.

“Experience has taught me they tend to guard reputations, individual and corporate, rather than embarking on reform.”

Should I be pleased or distressed that I am unable to produce concrete evidence proving him wrong, or even merely contrasting his experience?

 

[hapl808]

Should I be pleased or distressed that I am unable to produce concrete evidence proving him wrong, or even merely contrasting his experience?

He is 100% correct - institutions guard reputations above all else.

 

[Countrygirl]

Dr Shenton backtracked on her original criticisms of her colleagues today but she couldnt be questioned because she has had a break down as a result of Maeve's treatment and so didn't attend. Nonetheless, it seems the media isn't letting her get away with changing her statement as they are quoting her original criticisms.

https://www.dailymail.co.uk/news/ar...ying-care-not-doctors-lack-understanding.html

Family medic who tried to save woman, 27, who died of debilitating ME tells inquest other NHS staff trying to give her care were not even doctors and had 'lack of understanding'​

A family GP who desperately tried to save the life of a dying ME patient condemned other NHS staff for having a severe 'lack of understanding' when it came to treating the tragic 26-year-old's condition, despite warning them that if no immediate action was taken on her patient's malnutrition she would 'certainly' die, an inquest has heard.

Maeve Boothby O'Neill, 27, was left bedridden and unable to eat in the final months of her life due to the severity of her myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS).

Her family believe her death in October 2021 exposed 'a major systemic failing' of the health service to both understand and treat severe cases of the condition.

 

[Countrygirl]

https://www.theguardian.com/society...I3ewNxbmw0O9aOAQAQ_aem_SVjnCIm_cbMbfkFQF_e6wQ

GP who treated woman with severe ME tells inquest more funding is needed​

Dr Lucy Shenton says specialist care is required for patients such as Maeve Boothby-O’Neill, who died aged 27

There needs to be properly funded research into people suffering from myalgic encephalomyelitis (ME) and specialist services for patients, a GP who treated a young woman with the condition told her inquest.

Dr Lucy Shenton said doctors needed more help to treat patients such as Maeve Boothby-O’Neill, 27, who had the condition, also known as chronic fatigue syndrome, for a decade before she died at home in October 2021.


The inquest in Exeter heard that Boothby-O’Neill was admitted to the Royal Devon and Exeter hospital three times that year for treatment for malnutrition. In the last few months of her life, she was confined to bed, unable to chew food and had difficulty drinking because she was unable to sit up.

The inquest has heard that she was placed on a nasogastric tube for artificial feeding while in hospital but that it was removed following complications. An alternative – parenteral feeding through a vein – was rejected because it would have been unsafe in her case.

Shenton, who took over Boothby-O’Neill’s care in April 2021, said: “Regarding severe ME, there needs to be more funding and research to provide the evidence and guidelines for clinicians to work from. There needs to be somewhere within the NHS providing specialist care for patients with severe ME and an easy mechanism to access that provision.

 

[Countrygirl]

https://archive.ph/2024.08.02-16044...nquest-told-x028vsn5d#selection-2127.0-2421.3

Doctors didn’t accept ME was a medical condition, inquest told​

Maeve Boothby O’Neill’s case highlights the need for a specialist unit, her GP has said

new
Fiona Hamilton
, Chief Reporter
Friday August 02 2024, 4.55pm BST, The Times

Maeve Boothby O’Neill with her father Sean O’Neill, a Times journalist. Her GP said hospital staff seemed to react “with doubt and misunderstanding” to Boothby O’Neill’s condition
COLLECT

A 27-year-old woman who died after suffering with myalgic encephalomyelitis had been faced with several doctors who did not accept it was a medical condition and nurses “far out of their comfort zone”, according to her GP.

Maeve Boothby O’Neill’s case highlighted the need for properly funded research into ME and a specialist unit for patients suffering from the poorly understood condition, Dr Lucy Shenton said.
One consultant who reviewed Boothby O’Neill’s case in the months before she died in October 2021 expressed doubt that ME had a biological basis, according to Shenton.

Other professionals involved in her case had a “lack of understanding of ME [that was] likely to have fed into the assessment and information available to the doctors”. There needed to be more funding and research into ME, also known as chronic fatigue syndrome, to provide the evidence and guidelines for doctors and clinicians to work from, the GP said.

Boothby O’Neill’s landmark inquest has heard that she was desperate to live but her condition rapidly deteriorated leaving her bed-bound, unable to speak, dehydrated and malnourished. She was admitted three times to the Royal Devon and Exeter Hospital but resisted a fourth admission after being told there was no treatment that could alleviate her condition.

Although her patient was in excruciating pain in her final weeks, Shenton revealed she was unable to give her the strongest analgesics because social services were considering whether to seek a court order to admit her to hospital against her will. This did not happen.
Shenton, Boothby O’Neill’s GP for years and who was fond of her patient, was so traumatised by her death that she was unable to attend to give evidence at Exeter coroner’s court. She has suffered post traumatic stress and there were concerns it could trigger a mental health breakdown. Instead, she answered questions in writing...................................

 

[southwestforests]

That bit,

She was admitted three times to the Royal Devon and Exeter Hospital but resisted a fourth admission after being told there was no treatment that could alleviate her condition.

Brings to mind several days ago when I was looking at the public comments on a Yahoo News here in the USA reblog of one of the articles about this.
There was a very disturbing number of commenters saying, in various variations of wording, "Maeve refused treatment so the end outcome is totally Maeve's fault."

Maybe it's just because I'm a harsh and judgemental person, but ...
Reading comprehension impairment looks to be a widespread issue.
Deductive reasoning impairment looks to be a widespread issue.
Also seeming to be a widespread issue, kneejerk spouting of judgemental emotions which have their foundations directly contradicting documented reality.

If the general population is like that ...
And health care providers originate from the general population ...



Hmm ... after previously posting that I was not going to quote peoples comments from there, decided that today, yes, I will.
And ...
Found that Yahoo USA appears to have removed all the comments.
(it looks on my computer like Yahoo UK never did have comments enabled on their posts)
(or maybe a browser addon setting is obscuring them)