Consultant could not find anything medically wrong with woman who died of ME months later
Dr Thomas Fox did not recommend any specialist care for Maeve Boothby O’Neill, inquest hears
Patrick Sawer, SENIOR NEWS REPORTER31 July 2024 • 8:23pm
Sean O'Neill with his daughter Maeve Boothby-O'Neill, who died at the age of 27
A consultant said he could not find anything medically wrong with a young woman
who died with ME less than seven months later, an inquest has heard.
Dr Thomas Fox
discharged Maeve Boothby O’Neill from the Royal Devon & Exeter Hospital (RD&E) in March 2021 after a few hours without recommending any specialist care.
The 27-year-old died in October that year, after years of
slow decline from myalgic encephalomyelitis (ME), which had left her unable to function normally, feed herself, chew or swallow.
The inquest into her death heard on Wednesday that although her condition had deteriorated at home and she was struggling to move from her bed at all, Dr Fox told a GP he could not find any medical cause for her decline.
In a case note read to Exeter Coroner’s Court, Dr Juliette Campling stated that Dr Fox told her that they “can’t find anything medical – feel it is functional – can drink if she wishes to. She is happy to go home but mum not at all happy”.
Ms Boothby O’Neill’s parents fear that this assessment meant their daughter was
not offered the specialist care she desperately needed for her condition.
‘Maeve was capable of eating and drinking’
Their daughter was discharged a few hours after being admitted with a supply of “nutritional build up drinks” to take home, despite her mother Sarah Boothby’s strong reservations.
Asked by Sean O’Neill, Ms Boothby O’Neill’s father, what he meant when he said his daughter was “functional”, Dr Fox replied: “It describes individuals able to do a task.
“It’s a broad term, but the evidence we had was that at the time Maeve was capable of eating and drinking a reasonable amount.”
Sean O'Neill, Ms Boothby O'Neill's father, questioned Dr Thomas Fox during the inquest on Wednesday
In his witness statement Dr Fox told the inquest that when Boothby O’Neill was referred to the RD&E’s acute medicine unit on March 18, 2021, she “described symptoms of weakness and fatigue consistent with her underlying diagnosis of ME”.
He added: “There were no other worrying symptoms or symptoms of infection. Although she was globally weak she was capable of lifting her hand to her mouth to take a drink.
“Full neurological assessment revealed no focal neurological problem.”
Dr Fox, the lead for endocrinology at the hospital, said no “other abnormalities” were found and “her blood tests were normal”.
He told the inquest: “I had a long conversation with Maeve and subsequently by phone with her mother Sarah [due to Covid restrictions]. I explained that there were no acute medical issues that had contributed to Maeve’s worsening symptoms.”
Dr Fox added that, like many of the other doctors, he had never seen an ME patient with such severe symptoms as those displayed by Ms Boothby O’Neill.
Although Ms Boothby O’Neill agreed to being discharged at that point, Dr Fox’s assessment came despite her deteriorating condition, severe weight loss and inability to even get out of bed on her own.
Maeve Boothby O'Neill's condition deteriorated rapidly at home CREDIT: SEARLES
Dr Fox told the hearing: “We did intervene with nutrient supplements. My assessment was that Maeve was capable of using the [nutritional] supplement method. It would have been disproportionate to try more invasive steps at that point.”
Culture of disbelief
The inquest has also been told about a
culture of disbelief among some senior NHS professionals who believed ME is a mental and not physical illness.
In her case notes Beth Thompson, an acute dietician at the RD&E, said Ms Boothby O’Neill may have been suffering from a psychological condition which made it difficult for her to eat, such as depression.
Giving evidence Ms Thompson told Coroner Deborah Archer that by “psychological condition” she did not mean that Ms Boothby O’Neill was “making it up”.
“Not making it up. Absolutely not,” she said, adding that patients sometimes needed psychiatric treatment to help them cope with eating difficulties.
Ms Thompson told the inquest Ms Boothby O’Neill could not have been fed by a nasogastric feeding [NG] tube at home or in the community because the RD&E’s specialist nurses would not have seen her frequently enough.
Ms Boothby O’Neill had suffered with ME since her teens, but her illness became more serious in her mid 20s, with her condition deteriorating sharply in the last seven months of her life.
The “loving, bright and intelligent” young woman was eventually admitted three times to Royal Devon and Exeter Hospital (RD&E) over the course of 2021, but she refused a fourth admission in September 2021 because no treatment was available to alleviate her condition and her agony was merely being prolonged.
‘The only person helping me to eat is my mum’
Ms Boothby O’Neill
wrote a desperate email in June 2021 begging her family GP, Dr Lucy Shenton, to help her live after her hospital “didn’t do anything to help”.
In it she stated: “I know you are doing the best for me but I really need help with feeding. I don’t understand why the hospital didn’t do anything to help me when I went in. I am hungry. I want to eat. I have been unable to sit up and 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.”
In a moving note written four days before her death on Oct 3 2021, Ms Boothby O’Neill texted Dr Shenton, saying: “I want you to know you are the first doctor who tried to help me get well. This means everything to me. Thank you. I only wish I could have been a more treatable patient.”
Dr Shenton told her family that she had “never seen anyone so poorly treated as Maeve was”.
The inquest continues.
Add those up and noisy, loud, chaotic, become stressful like you wouldn't believe, the kind of "I Have To Run Away From This RIGHT NOW!" kind of stress.
