Trial By Error: Sean O’Neill’s Inquest Statement

By David Tuller, DrPH

Last Thursday, both of Maeve Boothby O’Neill’s parents testified at the inquest into her 2021 death from ME-related complications. (I earlier posted Sarah Boothby’s statement as read into the record.) It was the penultimate day of two weeks of court sessions in Exeter, in the south-east of England, UK. The coroner, Deborah Archer, is scheduled to release her factual findings this coming Friday.

Archer presided over the proceedings with a firm hand while exhibiting enormous compassion for both parents at key moments. As Sean O’Neill began reading his prepared statement into evidence, he paused. Archer immediately offered to read the statement herself–an offer he accepted quietly and, it seemed, gratefully.

Below is an edited version of the statement as read out in the courtroom.

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Maeve: “My first child and a very special girl”

Maeve was my first child and a very special girl. I remember the combination of love and overwhelming responsibilitly I felt when taking her home from the Royal London Hospital to the house where Sarah and I then lived in East London.

She was a beautiful baby and one of the most precious things about her early years was the bond she formed with her Irish grandmother. Maeve’s second name was Bernadette, named after my Mum, and the affection between the two of them was plain to see. Maeve was the only grandchild my mother knew because she died, aged just 66, from pancreatic cancer in June 1999.

We had moved to Devon by this time, but Sarah and I separated a short time later. I returned to London for work in 2000 but saw Maeve as often as possible. I bought a static caravan near her home in Moretonhampsstead and visited every other weekend and for longer periods in school holidays.

It seems strange looking back, but we had some great times in that caravan. She learned to ride her bike in a caravan park and there was a swimming pool which she adored and from which it was always hard to get her out.

Her illness—and her decision to isolate herself in the hope that resting would help her recovery from ME—would later put a strain on our relationship and family life. But the bond was never broken and in her last birthday card to me (a month before she died) she told me to “relive the good times—like cheese toasties and swimming at the caravan.”

She added: “I always wanted to get well enough for us to make things better.”

That was a shared wish. I had always believed that she would get better. That a cure would be found, or her resting would gradually return her to strength. I had daydreams about walking along the beach with her or sitting in a riverside restaurant having lunch and learning from her. She was bright, creative, articulate and opinionated.

She was gifted at languages and with customary determination learned Russian in her last few years at school. Imagine what a useful contribution she could have made to our society today.

*****

I believe now her ME began when she was about 13. 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 in a PE. Lesson.

She battled on through her teens, achieving excellent A level grades but then deciding not to go to university because she wanted to concentrate on getting well.

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.

Maeve was forced by medical prejudice and ignorance to rely on her own resources. She researched ME in great depth and was extremely knowledgeable, but she was unable to cure herself and medicine (with the exception of just a few special people) was unwilling and unable to help her.

Maeve never wanted to die. She had dreams and hopes and plans. Even in the grip of her illness, she was reading extensively (she rejoiced in the label ‘bluestocking’) and wrote the first draft of a smart, funny, quirky crime mystery set on Dartmoor in the 1920s.

One of her characters, a young woman, was living an isolated life after the death of her husband. One passage about the woman’s loneliness seems to me to have been Maeve writing about the sadness of her own life with ME: “The great grief she carried for the irretrievable loss of others but also of her former self was a wound that could not heal. It took a great deal, not exactly of effort, perhaps of skill, to maintain the right level of consciousness to make her continued existence bearable”.

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. And I say this as someone who is living with cancer.

In March last year, she and I were both in hospital around the same time. I was having state of the art, keyhole surgery to remove cancerous cells from my abdomen. My treatment was swift, skilful, and effective. By contrast, Maeve presented as acutely ill—immobile, weak, in pain and unable to digest food and in danger of malnutrition—at the Royal Devon and Exeter hospital only to be told by a consultant that there was nothing that could be done for her. Within hours of her admission, she was bundled back into an ambulance and sent home. Sarah was told to “prepare for the worst”. More than any other decision made at the RD&E last year, this shocked me. It was a blunt refusal to treat an acutely ill young woman—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 her last few weeks, Maeve showed great courage. She knew there was no cure for ME and she faced up to the fact she was going to die. She was angry at the way she had been treated but also showed us moments of dark humour.

She did not want to die. She was desperate to live and was full of dreams and hopes. But nor did she want to live a life in the shadows, confined to bed being fed through a tube.

I feel her loss every hour of every day.