**Trigger Warning: Upsetting Content**
Summary of the hearing
Today (27th Sept), 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 established and placed on public record.
The Coroner stated that the report will be sent to NHS England, the Department for Health and Social Care (DHSC), and the National Institute for Health and Care Excellence (NICE). In addition, the Chief Coroner mentioned the current absence of a policy document that provides a pathway of care for a person with ME who requires hospital care.
A Regulation 28 report is issued when any information arising from an Inquest into a person’s death prompts “a concern that circumstances creating a risk of other deaths will occur or will continue to exist in the future.”
During today's hearing, evidence was heard from the Medical Director of the Royal Devon & Exeter Trust, Dr Anthony Helmsley. In his statements, Dr Helmsley confirmed that there is limited guidance available for healthcare professionals regarding how to care for patients with severe ME and the hospital does not have any clinicians trained in treating ME/CFS.
Dr Helmsley agreed with the Coroner’s reference regarding the need for regional services for those with severe ME and it was noted that no resources are available to fund a service that could match the level of need.
The statements also cited the recent NHS England learning modules on ME/CFS, however, Dr Helmsley noted the resources remain unfinished and that taking the continuing professional development modules remains ‘voluntary’.
During the proceedings, Maeve’s parents, Sarah Boothby and Sean O'Neill questioned Dr Helmsley, which further highlighted 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.
MEA Comment
The inquest into the death of Maeve Boothby O'Neill has highlighted a number of serious failings in the way that people with very severe ME/CFS are cared for by the NHS – especially when they are at risk of developing life-threatening malnutrition.
So the ME Association welcomes the decision by the Coroner to produce a Section 28 Prevention of Future Deaths report to try and ensure that no more deaths occur in this way and that this will be sent to the Dept of Health and Social Care (DHSC), NHS England and NICE.
There also needs to be immediate action by the DHSC to make sure that all health professionals and trusts are following the very clear NICE guideline recommendations on the care and management of people with very severe ME/CFS.
This requires the preparation of clinical pathways that co-ordinate community/domiciliary care with hospital care, especially when admission for nutritional support is required.
We also need to return to the situation where there are a small number of specialist ME/CFS centres with dedicated hospital beds for the assessment and management of people with very severe ME/CFS.
Dr Charles Shepherd,
Trustee and Hon. Medical Adviser to the ME Association,
Member of the 2018-2021 NICE guideline on ME/CFS committee,
Member of the 2002 Chief Medical Officer's Working Group on ME/CFS
Note on very severe ME/CFS
People with very severe ME/CFS are bed bound with severely reduced mobility, they may have severe pain, and often have difficulty with speech and communication. They may have additional problems with eating, swallowing and digestion and are therefore at risk of life threatening malnutrition.
Link to NICE guideline section covering the management of severe and very severe ME/CFS
Further Information
- Courts & Tribunals Judiciary: Maeve Boothby O’Neill: Prevention of Future Deaths Report | 8th Oct 2024