A woman who died from severe ME desperately needed a “loving hug” as she neared the end of her life, but her hypersensitivity made all touch “unbearably painful”, her mother told a coroner.
During the inquest into the death of 27-year-old Maeve Boothby O’Neill, her mother, Sarah Boothby, testified about her daughter’s efforts to avoid starvation and her desire to live. However, she claimed that medical staff lacked the knowledge or resources to help her.
Maeve’s father, Sean O’Neill, said it was difficult to provide their daughter with the palliative care she needed when she became seriously ill, with suspicions still lingering that her illness was made up.
He said his daughter was in “great distress and physical pain” towards the end of her life. “There seemed to be a barrier to palliative care based on the idea that in this huge bureaucracy that developed around Maeve, someone seemed to think the illness was made up, not real,” he added.
The inquest in Exeter heard how Maeve became seriously ill with ME in 2021 and found it difficult to move, eat or drink. She went to the Royal Devon and Exeter Hospital (RDE) three times but asked to go home because she knew she was going to die.
Boothby became emotional as she said of her daughter: “If she was to starve to death with severe ME, she wanted to do so in the comfort of home and the care of her loved ones. She wanted a loving hug more than anything. By then it was too late for that; hypersensitivity made every touch unbearably painful. Maeve starved to death.”
She also told the inquest that her daughter wanted to live. “She did everything she could to survive.”
Maeve was diagnosed with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) in 2011. Ten years later it became very severe and by March 2021 she could no longer sit up, chew or hold a cup to her lips. She passed away in October 2021.
After a hospital stay, she was sent home without the amount of protein supplements she needed. There were not enough in stock and it took two weeks for them to be delivered to the community.
When she was admitted to hospital for the third and final time in the summer, she was in a “starvation state”, her mother said. She told the inquiry: “The hospital did not act quickly enough. It did not plan the admission as it should have.”
A nasogastric tube was tried but it didn’t work. Boothby said: “She judged she had reached her limit, knowing her death was inevitable.”
In her statement to the inquiry, Boothby said her daughter’s death was “completely preventable”. In evidence, she said: “This is about the system and how it didn’t work for Maeve.”
Boothby’s father was too emotional to read his two statements. The coroner, Deborah Archer, read them for him. He had written: “The medical orthodoxy is that ME is a behavioural problem or a mental illness, and that belief is deeply entrenched in the NHS despite growing scientific evidence that it is a physical illness. Medicine and the medical profession have been at a loss as to what to do.”
He added: “This orthodoxy led to Maeve being stigmatised in a way that so many patients are. It’s thought that they are malingerers or feigning illness or that parents are somehow responsible. It’s a view shared by many powerful people in the NHS.”
His statement ended with, “She desperately wanted to live and was full of dreams and hopes. But she also did not want to live in the shadows, confined to a bed and fed through a tube. I feel her loss every hour of every day.”
The investigation is still ongoing.