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Investigation and inquest
On 26th October 2021 Senior Coroner Philip Spinney commenced an investigation into the death of Maeve Bernadette Boothby O’Neill who was 27 years of age at the time she died on 3rd October 2021. The investigation concluded at the end of a 2-week inquest I conducted on 9th August 2024. I heard further evidence from the hospital trust on the need for a Regulation 28 report on 27th September 2024. The findings I made discussed the fact that despite Maeve having been tube fed on one occasion during admission this was not sufficient for her to recover. The inquest heard that provision of care for patients with severe ME such as that which Maeve suffered from was and is nonexistent and that being placed on a ward that did not have expertise in her condition made her admission to hospital exceedingly difficult for her to endure. The conclusion of the inquest was Natural Causes and Box 3 recorded that she died at home after 3 admissions were unable to treat the consequences of her severe ME.
Maeve Boothby O’Neill was suffering from severe ME during the period the inquest focused on namely January – October 2021. This meant that she was bed bound and reliant primarily on her mother to provide personal care. She was admitted to hospital on 3 occasions during this period namely on 18th March, 19th May – 3rd June and finally on 25th June -17th August. Despite attempts to treat her these ultimately failed and she died on 3rd October 2021.
Circumstances of the death
Maeve Boothby was 27 at the time of her death. She was diagnosed with ME at Frenchay hospital in 2011 and in 2019 it became so severe that she was bedbound for 21 hours per day.
Concerns about her rapid physical deterioration escalated and during 2021 she had three admissions to the RDE on 18th March , 19th May – 3rd June and finally on 25th June -17th August. These admissions were unsuccessful in preventing Maeve from suffering from malnutrition which was a consequence of her ME for which there is no known cure. Maeve sadly died at home on 3rd October 2021.
Coroner’s concerns
(1) During the course of the evidence it became clear that there were no specialist hospitals or hospices, beds, wards or other health care provision in England for patients with severe Myalgic encephalopathies (ME). This meant that the Royal Devon and Exeter Hospital had no commissioned service to treat Maeve and patients like her.
(2) During the course of the inquest it became clear that there was no current available funding for the research and development of treatment and further learning for understanding the causes of ME / Chronic Fatigue Syndrome (CFS).
(3) During the course of the inquest it became clear that there was extremely limited training for Doctors on ME/ CFS and how to treat it – especially in relation to severe ME.
(4 ) During the course of the inquest it became clear that the 2021 NICE guidelines on ME did not provide any detailed guidance at all on how severe ME should be managed at home or in the community and in particular whether or not there is any necessary adaptation needed to the 2017 guidance on Nutrition support for adults : oral nutrition support , enteral tube feeding and parenteral nutrition .
Information checked against the published report and official responses