Maeve's Inquest - Regulation 28 Report issued
September 27, 2024
** Trigger warning - upsetting content **
Evidence hearing summary
Today, during an evidence hearing in the Inquest into the tragic death of Maeve Boothby O’Neill, the Exeter Coroner’s Court confirmed a Regulation 28 (Prevention of Future Deaths) Report would be written and placed on public record, a report that will “start a change in this area”.
The Coroner also confirmed that the report will also be sent to NHS England, Department for Health and Social Care (DHSC), and the National Institute for Health and Care Excellence (NICE), alongside the Chief Coroner, mentioning the current absence of a policy document that would provide a pathway of care for someone with ME entering hospital.
Regulation 28 Reports are issued when any information is revealed as part of an Inquest into a person’s death which gives rise to “a concern that circumstances creating a risk of other deaths will occur or will continue to exist in the future.”
During the hearing, evidence was given from the Medical Director of the Royal Devon & Exeter Trust, Dr Anthony Helmsley.
In his statements, Dr Helmsley confirmed there is limited guidance available on how to care for patients with severe ME and that the hospital does not have any clinicians trained in treating ME.
Dr Helmsley agreed with the Coroner’s reference to the need for regional services for severe ME, noting that no resources are available to fund a service that could match the level of need.
The statements also recognised the recent NHS England learning modules on ME/CFS but Dr Helmsley noted the resources remain unfinished and that taking the modules remains ‘voluntary’.
Later in the hearing, Maeve’s parents, Sarah and Sean, both questioned Dr Helmsley, highlighting the limited learnings from previous cases across the NHS and the urgent need for dedicated facilities to meet the needs of patients with severe ME.
Action for ME comment
We are pleased that the Coroner will be issuing a Regulation 28 and that it will be sent to NHS England, the DHSC, and NICE.
We sincerely hope that, in receiving this Prevention of Future Deaths Report, urgent steps will be taken by the relevant national bodies to address the lack of specialist care and support for people with severe ME.
Whilst the Report is a step in the right direction, the ME community has been calling for urgent action for decades and it should not have taken such a tragic case for these calls to be heard.
Maeve’s Inquest has highlighted the clear need for greater understanding and treatment of severe ME throughout the NHS. Even with recent changes, there still remains limited guidance on severe ME and learning for healthcare professionals still remains voluntary.
This has to change.
We look forward to working closely with colleagues, including our Parliamentary Champions, to ensure that the Coroner’s Report is acted on and support and care pathways for people with severe ME are significantly improved.
Media coverage
- September 27 2024, Guardian article: 'Not a single bed set aside to treat ME in any UK hospital, says NHS director'
- September 27 2024, The Times article: 'Coroner to call for specialist ME services after Boothby O'Neill death' (**please note that this is behind a paywall**)
- September 27 2204, BBC Breakfast feature
- September 27 2024, The Telegraph article: 'Doctors must stop believing ME is a mental illness, bereaved father says' (**please note that this is behind a paywall**)
- September 27 2024, ITV News article: 'No care pathways for severe chronic fatigue syndrome, inquest told'
- September 27 2024, Devon Live article: 'No plans to address chronic illness bed shortage after Exeter woman died from ME'
- September 27 2024, BBC News article: 'Calls for action after death linked to ME'
- September 28 2024, LBC Radio feature (from 02:33:35)
- September 28 2024, The Standard article: 'No care pathways for severe chronic fatigue syndrome, inquest told'
- September 29 2024, LBC Radio feature (from 01:43:20)
- September 29 2024, Sidmouth Herald article: 'No care pathways for severe chronic fatigue syndrome, inquest told'
