The assistant coroner who heard evidence on the death of Maeve Boothby O’Neill has (7 Oct 2024) issued 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 inquest heard that provision of care for patients with severe ME, such as that which Maeve suffered from, was and is non-existent and that being placed on a ward that did not have expertise in her condition made her admission to hospital very difficult for her to endure.
In what was decribed in ‘The Times’ as a “watershed moment”, the assistant Coroner issued the first such Regulation 28 report concerning ME and addressed this specifically to the Department of Health and Social Care, NHS England, the National Institute for Health and Care Excellence (NICE), the Medical Research Council (MRC), the National Institute for Health and Care Research (NIHR), and the Medical Schools Council.
The recipients of such reports have 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. However, the assistant Coroner acknowledged that she did not have the power to ask for specific things to be done but “I can bring to the Government’s attention the concerns that were raised in this inquest.”
The terms of the Regulation 28 report are short and stark with the assistant Coroner narrating Matters of Concern as follows – hence the selection of bodies to be mandated to respond
During the course of the evidence it became clear
- that there were no specialist hospitals or hospices, beds, wards or other healthcare provision in England for patients with severe ME.
- that there was no current available funding for the research and development of treatment and further learning for understanding the causes of ME.
- there was extremely limited training for doctors on ME and how to treat it – especially in relation to severe ME.
- that the 2021 NICE guidelines on ME did not provide any detailed guidance at all on how severe ME should be managed at home or in the community and in particular whether or not there is any necessary adaptation needed to the 2017 guidance on Nutrition support for adults: oral nutrition support, enteral tube feeding and parenteral nutrition.
A spokesperson from the Department of Health and Social Care is quoted as responding to news of the issue of the report that
Our deepest sympathies are with Maeve’s family and friends in this tragic case. Every patient deserves to have their condition understood and treated to the highest standard, and this is a heart-wrenching example of a patient falling through the cracks. Maeve and her family were forced to battle the disease alongside the healthcare system which repeatedly misunderstood and dismissed her. It is important that we learn the lessons from every prevention of future deaths report, and we will consider the report carefully before responding appropriately. We are committed to improving the care and support for all those affected, and we intend to publish a Final Delivery Plan this winter which will focus on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease.
ME Research UK’s full coverage
Inquiry Opens | Week 1 Quotes and Media Coverage | Week 2 Quotes and Media Coverage | Inquiry Ends | Coroner’s Conclusions | Coroner to Issue Prevention of Future Death Report |
Media Coverage
Coroner demands urgent action to prevent further deaths from ME | The Times – 7th October 2024 (paywall) |
Address ‘non-existent’ severe ME care or risk further deaths, UK health minister told | The Guardian – 7th October 2024 |
Coroner highlights lack of specialist care for ME patients after woman’s death | Kent Online – 7th October 2024 |
Coroner who investigated the death of a young woman, 27, who died of debilitating ME demands further action to stop more tragedies | Daily Mail – 7th October 2024 |
Coroner highlights lack of specialist ME care | BBC News online – 7th October 2024 |
Coroner tells NHS to act on ‘nonexistent’ ME care in wake of 27-year-old’s death | Daily Telegraph – 7th October 2024 (paywall) |
Interview with Sean O’Neill | BBC Radio 4 ‘Today‘ Programme – 8th October 2024 (29 day availability) |
Interview with Sarah Boothby | BBC Breakfast – 8th October 2024 via YouTube |
Jane Garvey | Times Radio – 8th October 2024 via YouTube |