Maeve Boothby-O'Neill

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picture of a smiling young woman with curly brown hair
Maeve Boothby O'Neill on her 18th birthday.

Maeve Boothby O'Neill was a young Irish woman who died in England from very severe ME on October 3, 2021, aged just 27 years old.[1][2] Maeve was a promising writer, a natural scholar and talented at languages. She was diagnosed after 4 years of unrecognised illness, shortly before her 18th birthday. She was writing The Alchemists, the first of a series of novels, set on Dartmoor where she grew up in Devon, England, when she died. Maeve's father, Sean O'Neill, used his position as senior writer at The Times to write about ME. When Maeve died O'Neill attracted the interest of his peers which resulted in extensive coverage of the inquest, ME and Long Covid from July to October in 2024. The Prevention of Future Deaths Report was published on 7 October 2024 and sent to 6 national institutions for a response to their complicity in Maeve's death. A response was co-ordinated by the Minister of State for Public Health on behalf of the Secretary of State for Health and Social Care and a promise to make death from medical neglect of ME a 'never event' was published with the UK Government's Final Delivery Plan for ME for England in July 2025.

Illness

Medical neglect was a major contributing factor in Maeve's death. ME symptoms progressed until Maeve became too unwell from post exertional malaise (PEM) to complete a full liquid meal. Under the senior hospital dietician she became progressively malnourished and dehydrated due to a total absence of clinical expertise in ME. NHS hospital doctors refused to weigh the risk of death with the risks from tube feeding.[1] After months of refusing to intervene, the ward was persuaded to try a NG tube, for 7 to 10 days. NG feeding protocols required two qualified nurses to administer the feed at an angle of 30 degrees. NHS doctors had refused to treat the orthostatic intolerance that caused Maeve's symptoms to be exacerbated by sitting up. On an understaffed ward, nurses then insisted on attempting to feed Maeve three times what she had previously been taking orally. This caused Maeve to vomit most of the first feed. This exertion compounded the PEM which then prevented all forms of activity for the next two days, including taking any nourishment and being able to speak.[3] The tube remained in place and a second attempt was made to administer half the prescribed feed. This caused another collapse and even less nutritional intake over another two days. By day 9, Maeve had taken less by NG than she could sip orally lying flat. She asked for the NG tube to be removed. The hospital dietician had already refused to consider alternative types of feeding tube - such as TPN, wrongly believing blood test results which showed Maeve was well nourished. The fact that Maeve was only able to take an average of 300 calories a day was never taken into consideration. The electronic patient record was not designed to generate averages, or to flag malnutrition if meals were missed. NHS doctors were blind to Maeve's steady deterioration before their own eyes, ignoring her inability to move, chew, or swallow more than 15ml at a sip. Staying in hospital had accellerated Maeve's decline each time she was admitted. Clinicians always agreed she was medically fit for discharge and in August they sent her home to die for the last time, in the sole care of her mother for all hydration and nutrition by mouth, lying flat.

An inquest was opened immediately by Exeter and Devon Coroners. At a pre inquest hearing in November 2023 it emerged that the NHS has no policy and no facilities for treating severe (housebound) or very severe (bedbound) patients anywhere in the United Kingdom.

The full inquest was heard over 14 days in July and August 2024. Hundreds of people from across the globe followed the hearings online every day, causing the court's IT to crash everytime more than 130 people tried to dial in. UK news outlets reported on the inquest daily, attracting subsequent interest from mainstream outlets. The absence of any NHS provision and/or biomedical research into ME was sympathetically discussed on national TV news. A Leader in the Times optimistically commented Maeve's death had contributed a 'legacy of change'. Meanwhile the ongoing refusal by other NHS hospitals to deliver parenteral feeding, to equally unwell young women struggling to survive very severe ME, went unreported Karen Gordon https://www.change.org/p/save-karen-gordon-from-dying-of-malnutrition-and-dehydration-due-to-nhs-failings.

Through inquest disclosures Maeve's mother, Sarah Boothby (a qualified social worker) discovered Devon County Council was still trying to build a case against her after Maeve had died. Instead of responding to Maeve's calls for their help in protecting her from organisational neglect, the social work department had repeated alleged coercive control by Boothby during the last seven months of Maeve's life. Social workers had refused to visit Maeve, either in hospital or at home. This was a breach of their statutory duties. When she died, Maeve was in the process of taking the County Council to judicial review for its failure to protect her from their neglect.

In stark contrast with the response from local government, the Exeter NHS hospital published the first ever NHS branded clinical guidance on how to safely manage hospital admission and discharge of patients with severe and very severe ME. The Head of Patient Safety and Medical Director at the Royal Devon University NHS Healthcare Trust (RDUH) had tried throughout the inquest to get the guidance adopted nationally. NHS England refused their request.

Media coverage

Learn more

See also

References

  1. ↑ 1.0 1.1 Merritt, Anita; Rogers, Paul (September 29, 2022). "Mum's heartbreak as daughter, 27, loses severe ME battle". SomersetLive. Retrieved July 25, 2023.
  2. ↑ Sandeman, George (July 25, 2023). "Chronic fatigue syndrome patient told: 'You're making it up'". ISSN 0140-0460. Retrieved July 25, 2023.
  3. ↑ Tuller, David (January 27, 2023). "When the doctor doesn't listen". Coda Story. Retrieved August 13, 2023.
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