The Times 19th Oct 2024: My daughter died of ME. I had to fight the NHS for answers by Sean O'Neill

Countrygirl · Oct 19, 2024

https://www.thetimes.com/uk/healthcare/article/daughter-died-me-nhs-maeve-hxb6khtrp

My daughter died of ME. I had to fight the NHS for answers

When Sean O’Neill’s daughter Maeve died at 27, he faced years of waiting for an inquest and then the ordeal of reliving her decline due to poor treatment of her severe ME, to find out why the system failed her

Sean O’Neill with his daughter, Maeve Boothby O’Neill, in 2001. “This is my last duty to my daughter”
COURTESY OF SEAN O’NEILL, CHRIS MCANDREW FOR THE TIMES MAGAZINE
Sean O’Neill

Saturday October 19 2024, 12.01am, The Times

In the early hours of October 3, 2021, my eldest daughter, Maeve Boothby O’Neill, died, aged 27, at the home she shared with her mother in Exeter.

Maeve had suffered since her teens with the poorly understood disease myalgic encephalomyelitis (ME). The illness, which developed after a viral infection, stopped her going to university and piece by piece stole away her hopes, ambitions and independence. In her twenties she became housebound and was for long periods bedbound. In the last seven months of her life she became so unwell she could not chew or digest food.
• Reliving my daughter’s death was relentlessly heartbreaking

She was admitted three times to the Royal Devon and Exeter Hospital; she hoped for artificial feeding to keep her alive. She knew such support was offered to some ME patients in the UK and around the world. But there were no NHS pathways and little knowledge about how to treat someone with an illness that many in medicine seem to believe is a physical manifestation of a psychological disorder.
In August, feeling the hospital could not help her, Maeve elected to come home and spend her remaining time with those who loved her.

The inquest opens in the grand Exeter council chamber, flags hanging limply in the corners of the wood-panelled room. A long table laden with folders full of documents, above them the coroner on a high bench looking down. There are 150-plus online watchers who bombard the court with messages saying they “can’t hear anything”, not seeming to realise the hearing hadn’t started.

Sean talks to the media after his daughter’s inquest at County Hall, Exeter
TIMES MEDIA LTD

I’m wearing three hats. I am a grieving parent. I am having to be a makeshift lawyer. I am also a journalist. The coroner, Deborah Archer, has turned down the press’s request to see the documents that the process relies upon, so I feel it’s my responsibility to ensure reporters can access them to report fully and accurately.

We get under way with Dr Paul McDermott, who stands in for his absent colleague Lucy Shenton. He was surprised and shocked Maeve was discharged so rapidly when first admitted to hospital in March 2021.
“We all wanted help. I was hoping someone would take it on and go into more depth with it. I realised as a GP we had run out of all options. We were sending her in [to hospital] then, boom, she comes out the same day.”

I get the strong sense no one in the hospital wanted to take charge of Maeve’s care. No one wanted to take responsibility.
Lucy Shenton’s emails are read out. She didn’t want Maeve to become a “medical outlier”; she wanted someone to “get stuck in” — in the end she was the one who got stuck in, a two day per week GP “going the extra mile”. I remember her calling me one Sunday night in the middle of it all at a time when the Daily Mail was going gung ho for GPs, accusing them of being workshy and only holding telephone consultations.

With her grandmother in Teignmouth, Devon, when Maeve was around three years old
COURTESY OF SEAN O’NEILL
On June 18, 2021, Maeve had emailed Dr Shenton: “I know you are doing your best for me but I really need help with feeding. I don’t understand why the hospital didn’t do anything for me when I went in. I have been unable to sit up or chew since March. The only person helping me eat is my mum. I cannot get enough calories from a syringe. Please help me get enough food to live.”

Manage to limit myself to one tearful moment, when a note is read out from Maeve to the GP declining a home visit because she wanted to spend time with her mum: “I wanted her company when she got back because I feel so sad about so much.”
Dr Shenton is absent because she developed PTSD following Maeve’s death and there is real concern of a relapse were she to appear.

At times it all feels chaotic. The witness list I have is no longer current. It’s been changed at least three times since and no one has sent me a revised copy. We leap from folder to folder to folder; some lawyers have different page numbers from everyone else. At least the coroner seems on top of it.

July 23

Maeve’s picture is on the front page of the Daily Mail. She would be mortified. There is extensive media coverage.
Professor David Strain gives evidence. The first impression as he gives his career outline — professor, doctor, research focused, academic, BMA, Covid, diabetes — is that he is stretched very thinly.

He became involved in Maeve’s treatment after her second admission to hospital. He argues ME can be triggered by viruses such as Epstein-Barr virus (EBV), herpes, glandular fever. Patients suffer an “inappropriate reaction to an ongoing infection”.
The amount of research into the condition is “woefully inadequate”. He says there are probably 750,000 sufferers in the UK. Sufferers are “tremendously stigmatised”.

Sean and Maeve in New York in 2010
COURTESY OF SEAN O’NEILL
He adds, “All we have to do is walk back 50 years and patients with diseases like multiple sclerosis — before we had a good diagnostic test — were put on gluten-free diets or sent to psychologists or psychiatrists. That disease was also stigmatised and included in the label of chronic fatigue.”
He argues older medics who have “been through the historic medical schools” don’t see ME as a physical disease. “I think that is a travesty, and if this hearing alone can address (that) then that will be a massive step forward for the people who are living with ME today.”
Since Maeve’s death, Strain has been involved in eight other cases where ME patients have been supported with artificial feeding — including one case where intravenous nutrition was used. These feeding options were denied to Maeve or delayed until she was too weak. Strain says, “Since Maeve there are quite considerable changes that have taken place.”
At one point in the afternoon the virtual courtroom crashes and a picture of two cats pops up on the giant screens.

July 24

Feeling angry today. Peppered through the paperwork there are references to Munchausen syndrome and its associated proxy form, known by its new moniker FDIA (factitious disorder imposed on another). In a nutshell, there were some involved in Maeve’s case who did not believe her illness was physical and was being imposed upon her by her mum.
Am getting overemotional and this is when I wish I had a lawyer alongside me. The hospital has three lawyers sitting behind me today (one in-house, two external), but there is no publicly funded provision for families.
There are 6,600 pages of evidence to examine and digest.
This is ostensibly a fact-finding exercise. Maybe no one should have a lawyer at an inquest. The coroner could just ask questions of witnesses without the legal games?

July 25

2.40am. I’m awake and angry, heart thumping. Veering between rage and distress.
I’m trying to do my best. I do not know where the lines are — these legal lines that are visible to the lawyers but invisible to a grieving parent. This is my last duty to my daughter Maeve and I’m carrying it out because I feel that I failed in my duty to her in life. I did not understand enough about this awful disease. I trusted in medicine and medicine doesn’t seem to care about ME very much.
The coroner tells me off for going too far with a question about the lack of medical school education — but how am I supposed to know that’s beyond the limits? I ask my questions, sometimes emotionally because this is f***ing emotional, as someone who is grateful to medicine for treating my cancers for almost 15 years now. But I am also acutely aware, because of that cancer experience, that cancer medicine is always learning and changing and looking to improve. Why can that not happen for ME?
I’m tired and this has been an upsetting day… Both Dr Ovi Roy (gastro) and Dr Roderick Warren (endocrinology) say they “do not know” — nor will they take a view — on whether ME is a physical or a mental health condition.
Funny how they came up with the same formulaic response to the question.
Warren says, “My view is, I don’t know… I don’t think it’s a productive question to dwell on. I do not know what causes ME. I reserve the position of saying I don’t know…”

Maeve aged 15
COURTESY OF SEAN O’NEILL
Warren also says he has had no training in ME and was not aware there was any training in ME anywhere in the NHS. It was “unfortunate”, he says, that Maeve found herself in a hospital where there was no ME expertise.
Unfortunate!
Dr Roy says, “I was not her consultant at any stage.” That was a major problem — no one in the hospital took charge.
Later, I clash with the coroner when she suggests Maeve’s parents cannot make legal submissions on conclusions/law because we’re not lawyers. I point out families are supposed to be “at the heart of the process”.
I guess the pressure on her, with the media scrutiny, is quite intense. She later relents and lets me make some hamfisted legal points.

July 26

Dr Kash Patel, a warm, engaging doctor, gives evidence. He dealt with Maeve during her second hospital admission in May/June 2021. He says he struck up a rapport with Maeve, got a smile out of her. He says he is no expert on ME but agrees the cause is probably post-viral.
He was surprised when Maeve wanted to go home. Tried to persuade her to stay in hospital longer because he felt she was improving. But Maeve was adamant.
He admits his understanding of ME is limited, especially at this level of severity. Ward staff wanted to turn her or feed her or wash her regularly, but being touched and moved and disturbed all the time was unbearable for her — she was lying flat in bed with eyes masked and noise-cancelling headphones on. They didn’t get how traumatising it all was for her and how her ME symptoms were getting worse.
Dr Julia Prague is equally kind and well intentioned; says she has no doubts ME is a genuine physical illness. “Maeve has touched many of us — I cried when I heard Maeve had died. I hope things can be better in the future.”

July 29

I feel a heavy, heavy sadness. Everyone made mistakes: hospitals, doctors, social workers and us, her family. But it should never have been the case that Maeve was left to make all these decisions. Why did Maeve have to be the expert in her own condition? That’s how she is described by a lot of the medical professionals.
Yet was she listened to? Did they realise how her illness affected her? Did they believe she wanted to eat? Did they make her fearful of the risks of tube feeding? Did they explore all the options?
I am getting regular messages from anguished families caring for very ill people usually at home. A man turned up the other day to explain how his daughter was in a hospital in a dark room with dark glasses and headphones and none of the doctors knew what to do with her. He just wanted to come here and be supportive.

July 30

Steve Blackburn, a community dietician, gives evidence. He seems committed and knowledgeable and is trying to run a service decimated by cutbacks. He never met Maeve despite being the local dietician. His service is conducted via Microsoft Teams and telephone meetings. He says the service is not “commissioned” to do home visits except to patients who are already on nasogastric (feeding) tubes at home.
You can see more patients online in a day than you can see in person driving around the large, mostly rural area.
I ask if they discussed nasogastric tube feeding or intravenous nutrition. And was sufficient consideration given to stomach tube feeding (PEG or PEJ), which reduces the risk of aspiration? He can’t recall that being discussed. “With hindsight now, I might think differently.”

July 31

At times the futility of this process feels overwhelming. It cannot bring Maeve back and is utterly pointless unless there is systemic reform, cultural renewal, education, training.
Dr Fox, who sent Maeve home on the same day she was first admitted in March 2021, tells the court ME is “not a terribly rare condition” and he has encountered many patients with the diagnosis. Yet he has received no training or education.
Maeve was “severely affected” and “clearly weak” and he was concerned about further deterioration, yet he sent her home. He says the Covid situation made the hospital unsafe. “Being in hospital is not always a safe place to be.”
An email arrives with responses from Lucy Shenton to written questions from the court. She writes, “I remember that Maeve took pleasure in small things. Her mother always made sure that her room was beautiful, paying attention to textures and small details such as a rose in a room. Maeve appreciated these details. She was future focused. She had a lot of fight in her and wanted to get better.”

In Cornwall aged 17
COURTESY OF SEAN O’NEILL
She adds, “I had genuinely been optimistic earlier in the case. 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.”
A dietician, Beth Thompson, testifies, “I haven’t managed someone with complex ME before and therefore do not know how they are managed elsewhere in the country.” The hospital charts recording Maeve’s food and fluid intake are, to say the least, patchy.

August 1

My turn to give evidence today. The coroner asks me to read the statement I wrote almost three years ago. But I physically can’t. My throat constricts and I struggle to breathe, never mind speak. The coroner reads it on my behalf.

August 2

Last day of the factual evidence hearings — the sense of relief is powerful. Accompanied by exhaustion. One hundred and fifty-one people watching online.
If the inquest has achieved one thing it is that people are talking about ME, this hidden illness. One of the barristers says her father had a close friend whose wife died of the condition.
Yesterday a woman was here whose son had taken his own life because he knew his ME couldn’t be treated or cured.
A community nurse gives evidence. She never met Maeve and is standing in for someone else. What’s the point of her being here, I wonder, especially when she regularly says she can’t answer the question. The community nurses deferred to the community dieticians, who didn’t do home visits. The nurses attended risk management meetings but didn’t raise feeding and nutrition risks (not their department).

August 3

An ME patient, Whitney Dafoe, has written to the coroner from the US explaining how he has been kept alive by artificial feeding — including intravenous nutrition — while lying flat, for many years. The NHS thinks such feeding is impossible and dangerous. His letter is “out of scope” of the inquest.

August 6

The feeling of bereavement is overwhelming. When in the inquest room I could question, protest, make points — at least feel like I was doing something constructive. Now there is nothing. Are you supposed to return to normality?

August 8

I’m on the bus when I get an email from Ellie Hayward, health editor of The Times. She’s had advance notice of what health and social care minister Andrew Gwynne will say after the coroner’s conclusions tomorrow. Maeve “fell through the cracks” and the new government will work to ensure it doesn’t happen again.
I know Gwynne is coming from the right place. He has long Covid; he knows the reality of post-viral illness. But Maeve didn’t just fall through the cracks; she fell into a huge hole in the health and social care system. There is no specialist care for severe ME. None of the professionals had any education or training and few had any knowledge at all.

August 9

A long three-hour reading of the coroner’s conclusions, which I follow online. There is recognition of ME as a serious illness, of the need to learn lessons. She recognises the burden placed on the GP, Dr Shenton, by the failure of hospital doctors to take charge.
The coroner records that Maeve died of “malnutrition because of severe ME” and that she died at home on October 3, 2021, “after three admissions to hospital were unable [my emphasis] to treat the consequences of her severe myalgic encephalomyelitis”.

Maeve as a flower girl at her uncle’s wedding in London, circa 2001
COURTESY OF SEAN O’NEILL
She concludes, “The reality of this case is that I have found that it is not possible for me to say on the evidence whether any treatment would have halted the disease process in Maeve, even if she had been treated against her will under section. In making the findings that I have I hope that important lessons for the future treatment of ME can be learnt from her death. No doubt with the benefit of hindsight things would be different in many respects.”

September 25

A third statement arrives from Dr Anthony Hemsley, medical director of the Royal Devon and Exeter Hospital. He is pushing for change and has reformed the way things are done at his hospital because of “this very sad case”.
He writes, “It remains the case that the Trust is not commissioned, whether by NHS England or the regional ICB (NHS Devon integrated care board), to provide a specialist chronic fatigue syndrome (CFS)/ME service for patients with severe/very severe ME. As such, there is no named individual within the CFS/ME service who is assigned the role of managing/co-ordinating the care of patients with severe or very severe ME. This, as far as I am aware, is the position nationally across the country.”

September 27

Back in the cavernous (and now freezing) council chamber in Exeter to discuss a Prevention of Future Deaths report.
Hemsley gives evidence and is impressive. He has instigated changes locally which should improve care — they have seven patients on their books, all being treated at home with wraparound community care and bespoke plans if admission to hospital is required.
He has pushed at regional and national level for the development of a specialist service for severe ME patients, but has clearly been thwarted. His own trust is in financial dire straits and he believes that this is something that demands a national response.
He raised concerns with his regional boss who has taken it to Professor Sir Stephen Powis, national medical director of NHS England, for awareness. The conclusion is that there is no “definitive work that is being undertaken to address the issue”.
Powis’s response to the concerns about severe ME was to “note the deficiency in service”… then, apparently, to do nothing.
Hemsley says he pushed all the way to the top because, “I wanted to know that I had explored all routes.”
Keir Starmer is talking about getting the long-term sick back to work or cutting their benefits — no recognition that hundreds of thousands of people are out of the labour market because they are suffering ME and long Covid and the NHS is “unable” (and at senior level unwilling) to do anything about it.
The coroner says she will write a Prevention of Future Deaths report.
After the hearing, I drive to south Devon along narrow lanes to the quiet place where Maeve is buried on a steep hillside overlooking the River Dart.

October 7

The coroner’s Regulation 28 “report to prevent future deaths” drops into my inbox. It is addressed to Wes Streeting, the NHS and a list of medical research and education bodies. It is short and stark and makes the key points on specialist care, medical education and research.
“The inquest heard that provision of care for patients with severe ME such as that which Maeve suffered from was and is nonexistent and that being placed on a ward that did not have expertise in her condition made her admission to hospital very difficult for her to endure… In my opinion action should be taken to prevent future deaths and I believe you have the power to take such action.”
Over to you, Mr Streeting.
He has to reply within 56 days. The sting in the tail, however, is that he is not obliged to actually do anything. As Archer said at the hearing ten days ago, she writes a lot of these reports after inquests into avoidable deaths “and often nothing is done”.

UK

The Times 19th Oct 2024: My daughter died of ME. I had to fight the NHS for answers by Sean O'Neill

Countrygirl

Senior Member

https://www.thetimes.com/uk/healthcare/article/daughter-died-me-nhs-maeve-hxb6khtrp

My daughter died of ME. I had to fight the NHS for answers

When Sean O’Neill’s daughter Maeve died at 27, he faced years of waiting for an inquest and then the ordeal of reliving her decline due to poor treatment of her severe ME, to find out why the system failed her

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