“Maeve and her family were forced to battle the disease alongside the healthcare system which repeatedly misunderstood and dismissed her.”
Andrew Gwynne MP, Parliamentary Under-Secretary of State at the Department of Health and Social Care
Almost 3 years after her death, a full Coroner’s Inquiry opened on 22 July 2024 examining the circumstances surrounding the death of 27-year-old Maeve Boothby O’Neill from severe ME. Presided over by assistant Coroner Deborah Archer, the two-week Inquiry looked at her ‘care’ at the Royal Devon and Exeter Hospital from January 2021 until her death on 3 October 2021, delays in palliative care, and the wider lack of understanding in the medical community of ME/CFS. Throughout the 9 day hearing 18 persons provided evidence including healthcare professionals involved in her care and experts in M.E. A week after the Hearings ended and having read over 6,400 pages of evidence, Ms Archer delivering her 3 and a half hour 24,000 word long verbal findings on 9th August.
The assistant Coroner found that Ms Boothby O’Neill died of natural causes “because of severe myalgic encephalomyelitis (ME)” and that although important lessons would be learned from Ms Boothby O’Neill’s death, she did not find that any of the clinicians who treated her did not believe ME was a “true illness”.
In summary, the assistant Coroner
- said a named healthcare professional should have been appointed to co-ordinate Ms Boothby O’Neill’s care as soon as it was realised she required hospital admission.
- with the “benefits of hindsight”, had medics known that Ms Boothby O’Neill would “deteriorate to the point of not being able to tolerate food or drink at all”, an earlier feeding tube may have been given to her but “Whether this would have made a material difference to the outcome I cannot say”.
- “The disease for which there is no cure was not allowing her to take food and drink however administered, and the outcome may have been the same whatever the treatment given. “For these reasons I cannot say these factors caused or contributed to her death.”
- rejected the request of Ms Boothby O’Neill’s parents to deem the case a violation of Article 2 of the European Convention on Human Rights, which protects the right to life. She also ruled that Ms Boothby-O’Neill’s death could not be attributed to “neglect” on the part of health care providers.
- stated that it was “unrealistic” for Miss Boothby O’Neill to have been discharged home on the second occasion from hospital without a 24-hour care package in place. “This factor did in my view contribute to her downward trajectory in the round but it was what Maeve and her mother wanted and wished for because Maeve could not tolerate the hospital environment,” she said.
- Miss Boothby was her daughter’s full-time carer and struggled to look after her on her own, the inquest heard. She previously told the coroner it had been “impossible for me to get enough calories into Maeve from a liquid diet”. Miss Boothby said: “Maeve was starving to death. She knew it, I knew it, her father knew it, we knew it, the GP knew it. “How the hospital did not recognise this as the inevitable outcome of inadequate hydration and nutrition must be for them to answer.”
Throughout the proceeding Ms Boothby O’Neill’s parents were present playing an active part in questioning witnesses as well as giving testimony. To Sarah Boothby, Ms Boothby O’Neill’s mother, her daughter’s death was “both premature and wholly preventable” – a statement rebutted by a representative for the Royal Devon and Exeter Hospital who, after the verdict and having heard the assistant Coroner’s findings stated “The hospital does not consider that Maeve’s death was preventable. It disagrees with the criticism that it failed its duty of care to Maeve or that there were missed or important opportunities.”
Such has been the coverage of the Inquest that Andrew Gwynne MP, Parliamentary Under-Secretary of State at the Department of Health and Social Care, voiced his sympathies to Ms Boothby O’Neill’s family and friends but stated that her case was a “heart wrenching example of a patient falling through the cracks.” – a comment which was responded to by Mr O’Neill who retoted that “…… Maeve didn’t just fall through the cracks, she fell into a huge hole in our healthcare system.”
Commenting on the hearing Ms Boothby O’Neill’s father, Sean O’Neill reflected on events “My purpose has been to raise awareness of ME. We’ve heard none of the doctors had any training and therefore had little knowledge of ME……. There are no specialist wards for people with ME anywhere in the country, we know there’s a woeful lack of research, we need all those things addressed, and really really urgently.” Whilst Sarah Boothby feared that “The thing that worries me most is that this is just an inquest, and that it’ll disappear with tomorrow’s news. The question is where is the change going to come from?”
The written judgement will follow in due course and a hearing will be held on 27 September where the coroner will hear evidence about making a preventing future deaths report – such reports are issued to a person, organisation, local authority or government department or agency where the coroner believes that action should be taken to prevent future deaths. The respondent is given 56 days to reply in writing, giving details of actions that have been taken or proposed to be taken, or an explanation as to why no action will be taken to prevent future similar deaths. All reports and responses must be sent to the Chief Coroner and, in most cases, the Chief Coroner will publish the documents on-line.
What Next?
Following upon the verdict, Andrew Gwynne MP, Parliamentary Under-Secretary of State at the Department of Health and Social Care, reportedly stated that he was “committed to improving the care and support for all those affected”, adding that the government would publish a plan this winter “which will focus on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease”.
The plan referred to is likely to be the Delivery Plan for ME/CFS whose publication has been pushed farther and farther back. Launched in May 2020 it has been through a consulation phase which ended in October 2021 and yet an actual publication date or its final form are as yet unknown.
What is certain is that change to the care of those with ME (and specifically severe ME) MUST occur.
Mr O’Neill’s opinion over-all of the process shows the areas which must change in order to prevent more deaths of seriously ill ME patients whilst in the ‘care’ of the NHS.
The inquest heard that none of the medical staff treating her had any training or received any education in treating severe ME. Several professionals did not believe her illness was ‘real’. At the end of her life palliative care was delayed because of that disbelief. …..The coroner was told there were no specialist units, no wards, not even a bed anywhere in the NHS treating severe ME. There were no policies, protocols or guidelines for the treatment of ME in 2021 and there are still none today.
Imagine that being the case for any other serious, life-limiting or life-threatening illness.
It is not about the failings of individuals or a single hospital. It is about the entire system that should protect, or at least try to protect, those with severe ME ….. The health and social care system failed Maeve. It should not be allowed to fail others in future…. There must be radical change in the treatment of ME – starting with medical education, greatly improved research and specialist care provision for the most dangerously ill.
Media Coverage of Verdict
| Maeve Boothby O’Neill inquest: Woman died from malnutrition due to ME, coroner finds | itv news website, 9th August 2024 |
| Reliving my daughter’s death was relentlessly heartbreaking | The Times, 9th August 2024 (paywall) |
| Devon woman died from malnutrition due to severe ME, coroner concludes | The Guardian, 9th August 2024 |
| What is ME and why is the NHS approach to it being criticised? | The Guardian, 9th August 2024 |
| Treatment changes urged after ME patient’s death | BBC news website, 9th August 2024 |
| There’s so little real understanding of ME in the NHS’, says campaigner | Channel 4 news, 9th August 2024 |
| ME sufferer ‘fell through cracks of dismissive’ NHS, says minister | The Times (paywall), 9th August 2024 |
| Woman died from malnutrition due to ME – coroner | BBC news website, 9th August 2024 |
| What is ME and why is the NHS approach to it being criticised? | The Guardian, 9th August 2024 |
| ME patient had to fight NHS alongside her disease, says health minister | The Telegraph, 9th August 2024 |
| Forgotten faces of ME – ‘harrowing’ inquest, constant agony, and urgent call for change | Mirror, 10th August 2024 |
| ‘I’ve been tired since I was 13’: ME patients hope harrowing inquest will change perceptions | The Guardian, 10th August 2024 |
| Woman died from malnutrition due to ME, coroner finds | Independent, 10th August 2024 |
| Father of ME sufferer calls for ‘radical’ reform in the treatment of the illness | The Standard, 10th August 2024 |
| Trial By Error: Valerie Eliot Smith on the Inquest Findings | Virology blog, 12th August 2024 (Opinion Piece) |
| Everyone’s patient but no one’s responsibility | Karen Hargrave, 13th August 2024 (Opinion Piece) |
| Good Morning Britain interview with Mrs Boothby | itv, 14th August 2024 from 01.04.30 |
| A Deeper Dive into the Inquest’s “Findings and Conclusions” | Virology blog, 15th August 2024 (Opinion Piece) |
| Post-Inquest Comments from Sarah Boothby, Maeve’s Mum | Virology blog, 20th August 2024 (Opinion Piece) |
Inquiry Opens | Week 1 Quotes and Media Coverage | Week 2 Quotes and Media Coverage | Inquiry Ends | Coroner to Issue Prevention of Future Death Report | Actions Reported
