Maeve Boothby-O'Neill: Mum fears daughter's ME death could 'too easily' happen to someone else
Watch Ben McGrail's report here.
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.
"She had three separate omissions to the Royal Devon and Exeter Hospital in 2021. It seemed to me the RDE didn’t respond to the severity of her condition and failed in its duty of care.
"It did not take available specialist expert advice on how to avoid malnutrition and dehydration in ME."
Ms Boothby told the inquest her daughter had been a "healthy, robust child" who started suffering from persistent tiredness as a teenager, eventually giving up PE at school.
She was eventually diagnosed with ME/CFS at Frenchay Hospital in 2011 and her mother gave up her job to care for her, as a single parent, working part-time.
"She couldn’t cook, wash up, clean, get her benefits, make or attend appointments.
"We became socially isolated. In 2021 she couldn’t sit up or hold a cup to her lip.
"She needed tube feeding - Maeve knew the NHS couldn’t treat ME but trusted they knew how to tube feed," Ms Boothby said.
She added that Maeve was admitted to the RDE for nutrition and hydration three times in 2021.
"The appropriate form of tube feeding was never provided - the hospital’s response to her needs was inexplicable, at least to me.
"She became weaker and weaker, unable to speak above a whisper, doubly incontinent. As she feared, hospitalisation exacerbated symptoms on every occasion.
"Test results were always ‘normal’ and it seemed to me that was the basis for a lack of treatment.
"The hospitals seemed helpless even though they had direct access to the best advice in the UK," she said.
Ms Boothby - becoming emotional - went on to say that Maeve told her she didn't want to die in hospital.
"She wanted only a loving hug. By then it was too late - all touch was excruciatingly painful.
Miss Boothby added: “By this stage Maeve was starving to death. She knew it, I knew it, her father knew it, we knew it, the GP knew it.
“How the hospital did not recognise this as the inevitable outcome of inadequate hydration and nutrition must be for them to answer.
“After Maeve died, GP Dr Lucy Shenton told me she had never seen anyone so badly treated by the NHS.”
Rhys Hadden, representing the hospital trust, told assistant coroner Deborah Archer his client did not accept all of Miss Boothby’s evidence.
“The hospital does not consider that Maeve’s death was preventable,” he said.
“It disagrees with the criticism that it failed its duty of care to Maeve or that there were missed or important opportunities.
“At the time Miss Boothby made her statement in March 2022, it was her recollection of what Dr Shenton had said.
“I am mindful that Dr Shenton has since reflected and said she didn’t say that. She can’t recall saying that. That will be read in in due course.”
Ms Boothby added that, despite her illness, Maeve had written papers and novels.
"She had younger siblings, family and friends who loved her dearly. She had an abundance of creative talent, humour and intelligence.
"She wanted to live and did everything she could to survive. I did everything I could to support her.
"Maeve died unable to eat or drink without a medical intervention that could save her life.
"I am very concerned this could too easily happen again."
She would have been 'better off' if she had cancer, dad tells inquest
Maeve's father, the Times journalist Sean O'Neill, also gave evidence at her inquest today.
He began reading the statement, but became too emotional to continue, and so it was read out by the coroner.
Mr O'Neill said: "I am full of memories of Maeve. Her illness would later put a strain on our relationship but the bond was never broken.
"In her last birthday card she told me to relive the good times. She said ‘I always wanted to get well enough to make things better’.
"I always believed she would get better - I had daydreams about walking along the beach with her. She was bright, creative, articulated and opinionated.
"Imagine what a useful contribution she could have made to our society today. I never for one moment thought I would outlive her."
Mr O'Neill told the inquest how Maeve would design and knit Harry Potter-themed presents for her siblings every birthday and Christmas.
He added that his daughter "never wanted to die" but had hopes and dreams of what she might do in the future.
He said: "She would have been better off in the hands of the NHS if she had cancer - I say this as someone living with cancer. My treatment was swift, skillful and effective.
"In contrast Maeve was weak, in pain and in danger of malnutrition. Only to be told there was nothing that could be done for her.
"Sarah was told to prepare for the worst - more than any other decision this shocked me.
"A blunt refusal to treat an ill young woman - in my view it was discriminatory. I believe with another condition she would have been treated differently.
"I have little faith in institutions learning lessons or embarking on reform."
The inquest continues.