During the fortnight-long proceedings at Exeter Coroner’s Court, assistant Coroner Deborah Archer has presided over a hearing which has proven to be highly emotional for all concerned, but also focused the attention of the media and the medical profession on the ‘care’ provided to those with severe ME, specifically by the Royal Devon and Exeter Hospital but also by NHS England generally.
The Inquest has now been adjourned until 9 August 2024 at which point the Coroner is due to record her conclusions.
What can never be lost sight of is that the Inquiry centred on the events surrounding a “premature and wholly preventable” death of a young woman described as “exceptional” and “intelligent” at the age of 27 on 3 October 2021. Ms Boothby O’Neill was a beloved daughter and sister. As Ms Boothby O’Neill herself wrote, “I have been tired since I was 13. When I was 18 I was diagnosed with CFS/ME. I hoped diagnosis would help, that I would finally get treatment and recover my health. I had every potential to be an asset to humanity, and hoped and intended to advance the cause of human flourishing – I achieved A* and A-grade A-levels, and had offers from Russell Group universities. I had to reject them all. After finishing school in 2012 I quickly became housebound and was unable to access the in-person clinics offered by my local NHS CFS/ME Service, but had been a good scholar and was determined to be a good patient.”
Diagnosed with ME/CFS in 2011, Ms Boothby O’Neill’s illness became classed as “very severe” and in March 2021 she became unable to sit up, chew or hold a cup to her lips. NICE’s 2021 guideline on ME/CFS records that those affected by very severe ME/CFS are bed-bound, dependent on care, and require assitance with personal hygiene and eating – some may not be able to swallow and may need to be tube-fed. In addition, those affected can be very sensitive to sensory stimuli.
Through the valliant efforts of Ms Boothby O’Neill’s parents – Sean O’Neill and Sarah Boothby – the Inquest witnesses were questioned and challenged on the care their daughter received and on the inadequacies in the provision of specialist services for ME/CFS – and severe ME in particular – in the NHS, plus the lack of awareness/acceptance of the disease as a physical illness by healthcare professionals.
Much of the Inquest evidence surrounded nutrician and the care available. Reported in The Telegraph, “Ms Boothby O’Neill condition drastically deteriorated in the months leading up to her death, which saw her admitted to Royal Devon and Exeter Hospital three times – she rejected a fourth admission, feeling there was no prospect of treatment. When she was admitted to hospital for the third and last time in the summer of 2021, she was in ‘a starvation state’, her mother said. She told the inquest: ‘The hospital didn’t act quickly enough. It hadn’t planned for admission as it needed to.’ A nasogastric feeding tube was tried but did not work. Boothby said: ‘She made the judgment she had reached her limit, knowing her death was inevitable.'”
On the penultimate day of the Inquest, a statement was read on behalf of Mr O’Neill: “She was desperate to live and was full of dreams and hopes. But nor did she want to live a life in the shadows, confined to bed being fed through a tube. I feel her loss every hour of every day.”
It had already been acknowledged by the Royal Devon and Exeter Hospital’s (RD&E) Medical Director at a pre-Inquest hearing that “There is a lack of a commissioned specialist service for severe/very severe ME/CFS both locally, regionally and nationally… This gap in service has also been confirmed by the local Integrated Care Board. In order to rectify this situation, action is required at the highest level.” At the Inquest, the dietician observed that he expected that placements at specialist ME units were difficult to obtain [voices on social media have asked: where?] and that if Ms Boothby O’Neill’s nutritian issue was “treated as an ED [Eating Disorder]/MH [Mental Health] presentation then it might be easier to get her a long term bed”.
A Consultant who gave evidence on the 2nd day of the Inquest acknowleged that “Even today there are people who have been through historic medical schools who don’t recognise it [ME] as a disease… That’s a travesty this hearing can address and that will be a massive step forward.”
As Dr Wm Weir told the Inquest, “There’s a dogma that this condition is psychological and until that dogma is buried it will be very difficult to treat ME patients properly… There are still plenty of professionals out there who still adhere to this dogma and that inhibits a true understanding of this condition.”
No Inquest finding can ever atone for the suffering endured by Ms Boothby O’Neill nor ease the grief of her family but as Mr O’Neill wrote:
I hope the inquest will show that ME is very real, that it can be fatal and that there must be a change in medical culture, medical education and NHS provision to recognise that.
To Ms Boothby O’Neill writing in Jan 2021
My only hope lies in biomedical research, and adequate funding for this requires the medical establishment to set aside the inaccurate idea that behavioural treatments can cure ME.
Inquiry Opens | Week 1 Quotes and Media Coverage | Week 2 Quotes and Media Coverage | Inquiry Conclusions | Inquiry Ends | Inquiry Conclusions | Coroner to Issue Prevention of Future Death Report | Actions Reported
