**Trigger Warning: Upsetting content**
A mother whose daughter had myalgic encephalomyelitis (ME) said her death was “wholly preventable” and her local hospital failed in its duty of care.
BBC News
Extracts
Maeve Boothby-O'Neill, 27, had the condition since she was 13 and was being treated at the Royal Devon and Exeter Hospital before she died at home in Exeter on 3 October 2021.
Her mother, Sarah Boothby-O'Neill, told the inquest in the city: “I believe the evidence shows Maeve is likely to have died from malnutrition and dehydration because she had severe ME. I therefore believe her death was both premature and wholly preventable.”
Lawyer for the hospital Rhys Hadden said the trust did not accept Miss Boothby-O'Neill's death was preventable.
Ms Boothby-O'Neill said by March 2021, Maeve, who was her only child, was “unable to sit up, hold a cup of tea to her lips or chew” and that she could have been “treated by tube feeding in hospital”.
She said the “appropriate form of tube feeding was never provided”. “
At home it was impossible for me to get enough calories into Maeve from a liquid diet,” she said.
Without special nutritional intervention, Maeve's deterioration could only continue, yet her continual deterioration across and throughout three admissions seemed to go unnoticed by the hospital.
Mr O'Neill added:
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 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.
Ms Boothby-O'Neill told the inquest Maeve did not want to die in hospital.
If she had to die from starvation with severe ME, she wanted it to be in the familiarity of home and the care of those she loved.
Further media coverage
- The Mirror: Distressed young woman with chronic fatigue ‘knew she would starve to death at home' | 1st August 2024
- Devon Live: Chronic ME sufferer knew she would starve to death, inquest hears | 1st August 2024
- Evening Standard: Chronic ME sufferer knew she would starve to death, inquest hears | 1st August 2024
- Belfast Telegraph: Inquest into death of NI man’s daughter with chronic ME reveals she ‘knew she would starve to death | 1st August 2024