“It is, in my view, shameful that a hospital in the UK in 2021 should be ‘unable’ to treat a disease that has been recognised by the World Health Organization for more than 50 years.
Sean O’Neill (father of late Maeve Boothby O’Neill) – reported in The Guardian
“And it is not just one hospital, it is the entire health system in the UK – public and private – that is unable to treat severe ME.”
On 9 August 2024 when the assistant Coroner delivered her verbal findings stating that she found that Ms Boothby O’Neill died of natural causes “because of severe myalgic encephalomyelitis (ME)” it was also announced that a further hearing would be held on 27 September where the assistant coroner would 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.
Such a hearing was held and widely reported in the press (see table below) with the assistant Coroner deciding that she would, indeed, issue such a future deaths report addressed to the Department of Health and Social Care, NHS England, National Institute for Health and Care Excellence (NICE) and other bodies after the inquest. 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.”
At the 27 September hearing it was queried whether any moves were afoot to address a nationwide deficiency in specialist hospital units and beds for patients with severe ME/CFS. The assistant Coroner heard from Royal Devon University Healthcare NHS Foundation Trust’s medical director that he believed NHS England was not carrying out “any active work on this at the current time”. As for the late Ms Boothby O’Neill’s local NHS Trust, he confirmed there were not only were there no care pathways for severe and very severe ME/CFS at the Royal Devon but there was no physical location for such care within a hospital setting and that “The recommended physical requirements are beyond reasonable for a standard secondary care acute hospital….. It is certainly not within my gift to provide that level of service.”
Royal Devon University Healthcare NHS Foundation Trust’s medical director narrated that he had spoken with the medical director for NHS England south west region and with national medical director of NHS England who both recognised the gap in care but no concrete action was taken. Funding constraints were also acknowledged.
After the hearing Ms Boothby O’Neill’s father Sean O’Neill was reported by the BBC to say that the report to prevent future deaths could “hopefully point towards reform” and tackle what he described as a “blindspot in this terrible illness that medicine and science struggle to recognise … I’m really hopeful it will bring about change…. It’s been three years since Maeve died and there’s been very little change so far. Hopefully the coroner sparks something that will drive change forward.”
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 | Inquiry Opens | Week 1 Quotes and Media Coverage | Inquiry Ends | Inquiry Conclusions | Actions Reported
| Calls for action after death linked to ME | BBC new online – 27 September 2024 |
| ‘No care pathways’ for severe chronic fatigue syndrome, inquest told | Evening Standard – 27 September 2024 |
| LBC Radio Natasha Devon interview with Karen Hargrave | LBC online – 8 min via Youtube |
| Not a single bed set aside to treat ME in any UK hospital, says NHS director | Guardian – 27 September 2024 |
| Exeter: Inquest for woman died of ‘chronic fatigue’ at RD&E | Sidmouth Herald – 29th September 2024 |
| The Times view on the chronic fatigue syndrome inquest: Respect ME | The Times – 30th September 2024 (paywall) |
| Coroner demands urgent action to prevent further deaths from ME | The Times – 7th October 2024 (paywall) |
