Coroner's section 28 report to prevent further ME deaths and The Times article today 7th Oct 2024

[Countrygirl]

https://archive.ph/oPH38#selection-1427.0-1701.335​

THE TIMES

7TH OCT 2024​

ALSO SEE ATTACHED FILE: CORONER'S SECTION 28 REPORT

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Coroner demands urgent action to prevent further deaths from ME​

The death of Maeve Boothby O’Neill highlighted misunderstandings about chronic fatigue syndrome — and the “non-existent” care available to sufferers

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Fiona Hamilton
, Chief Reporter
Monday October 07 2024, 12.00pm BST, The Times

Maeve Boothby O’Neill on her 18th birthday; she died in October 2021, aged 27
PA
The health secretary and NHS officials must urgently address the “non-existent” care available to ME sufferers and the lack of funding for research into the condition or risk more deaths like that of Maeve Boothby O’Neill, a major report has found.
In a watershed moment, the coroner in Boothby O’Neill’s inquest issued a prevention of future deaths report on Monday, the first of its kind involving the poorly understood condition of myalgic encephalomyelitis.
Deborah Archer, who concluded in the summer that Boothby O’Neill, 27, died of malnutrition as a result of ME, has called on Wes Streeting, NHS officials and other health bodies to take urgent action.

She wrote in a Regulation 28 report: “During the course of the inquest the evidence revealed matters giving rise to concern. In my opinion there is a risk that future deaths could occur unless action is taken.”
Boothby O’Neill’s death in October 2021 has become a landmark case highlighting misunderstandings of ME, also known as chronic fatigue syndrome, and the lack of treatment available for severe sufferers.
Boothby O’Neill, the daughter of Sarah Boothby and Sean O’Neill, a senior Times journalist, suffered from ME since her teens and it left her bedbound, unable to speak and malnourished. She begged for help to eat when she became so fatigued that her body shut down but doctors were unable to treat her illness, despite three admissions to the Royal Devon and Exeter Hospital in 2021. She chose to die in her own home “in the care of those she loved” rather than in hospital.

Sean O’Neill condemned the “shameful” lack of action to address ME even after his daughter’s death
In August, after a two-week inquest, Archer concluded that Boothby O’Neill, who had suffered from the illness since her teens, died from natural causes when doctors were “unable to treat the consequences of her severe ME”.
• ‘A horrible way to die … and no doctors can help you’
Archer’s prevention of future deaths report today outlines how, despite Boothby O’Neill being tube-fed during one admission, it was not sufficient for her to recover. She said that the inquest heard that care for patients with severe ME “is nonexistent” and that hospital admissions were “very difficult for Maeve to endure” because of the lack of expertise on wards.
Archer’s Regulation 28 report highlights the absence of specialist beds across the country for severe ME patients, which meant there was no treatment. She also called attention to the fact there is no funding available for research into ME, and that training for doctors is “extremely limited”. Archer also raised shortcomings in NICE guidelines on ME, in particular about how nutrition support should be handled for severe patients.

Boothby O’Neill chose to die in her own home “in the care of those she loved” rather than in hospital
Streeting, the health minister Andrew Gwynne, the NHS, NICE and other bodies have a statutory 56 days to respond to Archer’s report. However, the coroner’s recommendations are not legally enforceable and at a hearing last month Archer said that she had issued reports in other cases but that “nothing was done”.
• The Times view on the chronic fatigue syndrome inquest: Respect ME
Sean O’Neill said that that hearing revealed a “shameful” lack of action at senior levels to address ME, given that three years after Boothby O’Neill’s death there were still no beds anywhere in the country set aside for the treatment of a severely ill patient.
Senior officials at the Royal Devon have stressed to NHS bosses the need for action but have been told that there is “no active work” to introduce specialist services.
It comes despite repeated pledges by the government to do more for ME patients. Gwynne, the minister for public health and prevention, said after Archer’s ruling in August that Boothby O’Neill “fell through the cracks” and he pledged to boost research, improve attitudes and “better the lives of people with this debilitating disease”.