**Trigger Warning: Upsetting content**
Maeve Boothby O’Neill’s father pleads for reforms to ‘prevent future deaths from this awful illness’ as a report highlights the ‘non-existent’ care available
By Fiona Hamilton at The Times
Extracts
The health secretary and NHS officials must urgently address the “non-existent” care available to ME sufferers and the lack of funding for research into the condition or risk more deaths like that of Maeve Boothby O’Neill, a coroner has urged.
Deborah Archer, who conducted Boothby O’Neill’s inquest, issued a prevention of future deaths report on Monday, the first of its kind involving the poorly understood condition of myalgic encephalomyelitis.
Archer, who concluded in the summer that Boothby O’Neill, 27, died of malnutrition as a result of ME, has called on Wes Streeting, NHS officials and other health bodies to take urgent action.
Archer’s prevention of future deaths report outlines how, despite Boothby O’Neill being tube-fed during one admission, it was not sufficient for her to recover. She said that the inquest was told that care for patients with severe ME “is nonexistent” and that hospital admissions were “very difficult for Maeve to endure” because of the lack of expertise on wards.
Archer’s report highlights the absence of specialist beds across the country for severe ME patients, which meant there was no treatment. She also called attention to the fact there was no funding available for research into ME, and that training for doctors was “extremely limited”. Archer also raised shortcomings in Nice guidelines on ME, in particular about how nutrition support should be handled for severe patients.
Further media coverage
- The Independent: Coroner highlights lack of specialist care for ME patients after woman’s death | 1 Aug 2024
- Daily Mail: Coroner who investigated the death of a young woman, 27, who died of debilitating ME demands further action to stop more tragedies | 7 October 2024
- The Guardian: Address ‘non-existent’ severe ME care or risk further deaths, UK health minister told | 7 October 2024
- The Telegraph: Coroner tells NHS to act on ‘non-existent’ ME care in wake of 27-year-old’s death | 7 October 2024
- Express & Star: Coroner highlights lack of specialist care for ME patients after woman’s death | 7 October 2024
Further Information
- The ME Association: Maeve Boothby O’Neill Inquest – Regulation 28 Report to be issued | 27 September 2024
- Courts & Tribunals Judiciary: Maeve Boothby O’Neill: Prevention of Future Deaths Report | 8th Oct 2024