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https://www.thetimes.com/uk/healthc...rs-of-me-after-boothby-oneill-death-798d9sx6v
Maeve Boothby O’Neill, here with her father, Times writer Sean O’Neill, died in October 2021 aged 27
SEAN O’NEILL
The situation is still so “shameful”, an inquest hearing was told on Friday, that three years after Boothby O’Neill’s death there is still not a single bed anywhere in the country specifically set aside for the treatment of a severe ME patient.
Boothby O’Neill was 27 when she died in October 2021 from severe malnutrition due to ME, also known as chronic fatigue syndrome. 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 hospital admissions that year alone.
Archer said she hoped her ruling — which is expected to emphasise a need for national specialist services, funding for research and an overhaul of the approach to ME patients — would bring about crucial change.
It is the first time a coroner has issued a ruling over the death of an ME patient and represents a vindication of years of campaigning by Maeve’s father Sean O’Neill, who writes for The Times. He has repeatedly highlighted the neglect shown towards ME patients, the scepticism about the illness displayed by some medical professionals and a “woeful” lack of funding for research.
• Patients with severe at risk of starvation, doctors say
Sean O’Neill said he hoped the coroner’s report would lead to meaningful national change
MARK PASSMORE FOR THE TIMES
O’Neill said the coroner’s decision was hugely significant: “Science and medicine have a blind spot where this awful illness is concerned but the coroner has clearly seen the risks posed by that systemic failure. I hope her report will be a spur to action on medical training, much needed biomedical research and the provision of specialist care for patients with severe ME.
“Next week will mark three years since Maeve died. All this comes far too late for her, but it might herald a time of change for the hundreds of thousands of people suffering with this devastating disease.”
O’Neill said that there had been little meaningful change at a national level since his daughter’s death, despite promises from government to help an increasing number of severe ME patients — a development linked to long Covid.
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That was underscored on Friday during a hearing at Exeter coroner’s court, where a hospital boss revealed that his attempts to improve the approach to treatment had been repeatedly thwarted.
Dr Anthony Hemsley has stressed to the highest levels of the NHS that there are no specialist services for seriously ill patients but has been told there is “no active work” to address this at a national level.
The Royal Devon and Exeter Hospital, where Maeve was admitted, has made major changes to improve its care for ME patients but the requirements for severe sufferers are beyond what it can offer, Hemsley said.
Hemsley, the medical director for the NHS trust that runs the hospital, emphasised the need for a national unit but said there was no such thing — and not even a bed in the country.
In a written submission, O’Neill said: “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 Organisation for more than 50 years.
“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.”
• NHS bosses reject calls for specialist ME care
Hemsley took his pleas for help to the NHS’s specialist commissioning body but was told ME “wasn’t deemed to be appropriate” for its focus. He said the issue had also been raised with Professor Sir Stephen Powis, NHS England’s national medical director. The outcome was to “note the deficiency in service” but there was no current work to address it, he said.
Dr Anthony Hemsley was praised by Maeve Boothby O’Neill’s mother for his work
MARK PASSMORE FOR THE TIMES
Hemsley said: “I just wanted to know, for myself, that I had explored all routes.”
Sarah Boothby, Maeve’s mother, who separated from O’Neill when their daughter was five, thanked Hemsley “from every cell in my body for what you have discovered about systemic failings in approach to ME”.
In August, after a two-week inquest, Archer concluded that Boothby O’Neill, who had suffered from ME since her teens, died from natural causes “because of ME”. The poorly understood illness had left her bedbound, unable to speak and malnourished. She chose to die in her own home “in the care of those she loved” rather than in hospital.
Archer will write to the NHS, the Department of Health and Social Care and other relevant authorities to raise her concerns about the treatment of ME patients. Her ruling will be made public.
The lack of action at a national level comes despite repeated pledges by the government to do more for ME patients. After Archer’s ruling last month, Andrew Gwynne, the minister for public health and prevention, said that Boothby O’Neill “fell through the cracks” and pledged to boost research, improve attitudes and “better the lives of people with this debilitating disease”.
Coroner to call for specialist ME services after Boothby O’Neill death
Maeve Boothby O’Neill’s case highlighted an inability to care for patients who suffer with myalgic encephalomyelitis, or chronic fatigue syndrome
August 06 2024, 6.17pm
Maeve Boothby O’Neill, here with her father, Times writer Sean O’Neill, died in October 2021 aged 27
SEAN O’NEILL
The situation is still so “shameful”, an inquest hearing was told on Friday, that three years after Boothby O’Neill’s death there is still not a single bed anywhere in the country specifically set aside for the treatment of a severe ME patient.
Boothby O’Neill was 27 when she died in October 2021 from severe malnutrition due to ME, also known as chronic fatigue syndrome. 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 hospital admissions that year alone.
Archer said she hoped her ruling — which is expected to emphasise a need for national specialist services, funding for research and an overhaul of the approach to ME patients — would bring about crucial change.
It is the first time a coroner has issued a ruling over the death of an ME patient and represents a vindication of years of campaigning by Maeve’s father Sean O’Neill, who writes for The Times. He has repeatedly highlighted the neglect shown towards ME patients, the scepticism about the illness displayed by some medical professionals and a “woeful” lack of funding for research.
• Patients with severe at risk of starvation, doctors say
Sean O’Neill said he hoped the coroner’s report would lead to meaningful national change
MARK PASSMORE FOR THE TIMES
O’Neill said the coroner’s decision was hugely significant: “Science and medicine have a blind spot where this awful illness is concerned but the coroner has clearly seen the risks posed by that systemic failure. I hope her report will be a spur to action on medical training, much needed biomedical research and the provision of specialist care for patients with severe ME.
“Next week will mark three years since Maeve died. All this comes far too late for her, but it might herald a time of change for the hundreds of thousands of people suffering with this devastating disease.”
O’Neill said that there had been little meaningful change at a national level since his daughter’s death, despite promises from government to help an increasing number of severe ME patients — a development linked to long Covid.
l
That was underscored on Friday during a hearing at Exeter coroner’s court, where a hospital boss revealed that his attempts to improve the approach to treatment had been repeatedly thwarted.
Dr Anthony Hemsley has stressed to the highest levels of the NHS that there are no specialist services for seriously ill patients but has been told there is “no active work” to address this at a national level.
The Royal Devon and Exeter Hospital, where Maeve was admitted, has made major changes to improve its care for ME patients but the requirements for severe sufferers are beyond what it can offer, Hemsley said.
Hemsley, the medical director for the NHS trust that runs the hospital, emphasised the need for a national unit but said there was no such thing — and not even a bed in the country.
In a written submission, O’Neill said: “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 Organisation for more than 50 years.
“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.”
• NHS bosses reject calls for specialist ME care
Hemsley took his pleas for help to the NHS’s specialist commissioning body but was told ME “wasn’t deemed to be appropriate” for its focus. He said the issue had also been raised with Professor Sir Stephen Powis, NHS England’s national medical director. The outcome was to “note the deficiency in service” but there was no current work to address it, he said.
Dr Anthony Hemsley was praised by Maeve Boothby O’Neill’s mother for his work
MARK PASSMORE FOR THE TIMES
Hemsley said: “I just wanted to know, for myself, that I had explored all routes.”
Sarah Boothby, Maeve’s mother, who separated from O’Neill when their daughter was five, thanked Hemsley “from every cell in my body for what you have discovered about systemic failings in approach to ME”.
In August, after a two-week inquest, Archer concluded that Boothby O’Neill, who had suffered from ME since her teens, died from natural causes “because of ME”. The poorly understood illness had left her bedbound, unable to speak and malnourished. She chose to die in her own home “in the care of those she loved” rather than in hospital.
Archer will write to the NHS, the Department of Health and Social Care and other relevant authorities to raise her concerns about the treatment of ME patients. Her ruling will be made public.
The lack of action at a national level comes despite repeated pledges by the government to do more for ME patients. After Archer’s ruling last month, Andrew Gwynne, the minister for public health and prevention, said that Boothby O’Neill “fell through the cracks” and pledged to boost research, improve attitudes and “better the lives of people with this debilitating disease”.