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Reg 28 Prevention of Future Deaths report issued

October 07, 2024

The Report

Today the Coroner of the inquest held into Maeve Boothby O’Neill’s death, issued a Regulation 28: Report to Prevent Future Deaths. The Coroner outlines her opinion that action should be taken and sent the report to the following whom she believes has the power to take that action:

Andrew Gwynne MP (Parliamentary Under-Secretary, Department of Health and Social Care) and Rt Hon Wes Streeting (Secretary of State for Health and Social Care)

  • NHS England (NHSE)
  • NICE (National Institute for Health and Care Excellence)
  • Medical Research Council (MRC)
  • National Institute for Health Care and Research (NIHR)
  • Medical Schools Council

Matters of Concern

The Coroner highlights her findings from the inquest that Maeve died of “natural causes and…that she died at home after three admissions to hospital were unable to treat the consequences of her severe ME”.

She goes on to say that “during the course of the inquest the evidence revealed matters giving rise to concern. In [her] opinion there is a risk that future deaths could occur unless action is taken. In the circumstances it is her statutory duty to report to [them].”

The Coroner identifies four matters of concern:

  1. The lack of specialist hospitals or hospices, beds, wards or other health care provision in England for people with ME which meant that the Royal Devon and Exeter Hospital where Maeve was treated had no commissioned service to treat her or others like her.
  2. No current available funding for the research and development of treatment and further learning for understanding the causes of ME/CFS.
  3. Extremely limited training for doctors on ME/CFS and how to treat it – especially in relation to severe ME.
  4. The NICE Guideline on ME (2021) does not provide detailed guidance at all on how severe NME should be managed at home or in the community and, in particular, whether adaptation is required to the 2017 guidance on nutrition support for adults.

What Happens Next?

Those in receipt of the report have 56 days to respond to the Coroner’s concerns and must outline action taken or action they propose to take. If no action is being taken, a reason must be provided.

The Coroner can extend the deadline of 3 December 2024.

Responses to the Coroner will be passed to the Chief Coroner and all parties that she feels should receive them and/or may find it of interest or useful.

The Chief Coroner may publish complete or redacted responses and share this with anyone he believes may find it useful or of interest.

Action for ME’s Views

This is a landmark report produced following the incredibly sad death of Maeve Boothby O’Neill. We welcome the report and hope that the parties it has been sent to note the matters of concern and take immediate steps to address them.

The four matters of concern that Deborah Archer, Assistant Coroner raised in her report are nothing new to us at Action for ME however, we are grateful that issues around specialist provision, research funding availability, training for doctors and issues with the NICE guideline have all been singled out.

We hope that the response from the parties who have received the report will be substantive and, focussed on addressing these legacy issues. We look forward to seeing their individual responses. We know of several similar cases to Maeve’s that are currently ongoing, and we fear that there could be repeat of her treatment and untimely death if things do not change. It is so important that Maeve’s death need not be in vain and these organisations ultimately hold that power to create change for the future.

The first recipients listed in the report are Andrew Gwynne, Wes Streeting and the Department for Health and Social Care. They have the power to launch the long-awaited Delivery Plan on ME and ensure that it is now also informed by the report.

Alongside the immediate need to improve services and support for people with ME, especially those with severe and very severe ME, we urgently need a strategic approach to funding for ME research and call on the government to ensure that this happens.