Trial By Error: After ME-Related Suicide, Second Coroner in England Issues “Report to Prevent Future Deaths”

By David Tuller, DrPH

A coroner in west England has called out the shortage of services for those with severe ME after conducting an inquest into the case of a woman with the illness who committed suicide last summer. The coroner for the Avon area, Debbie Rookes, prepared what is called a Regulation 28 Report to Prevent Future Deaths (RPD). The report, which is dated July 7th, was sent to the Secretary of State for Health and Social Care, who is required to respond, although not necessarily to do anything more.

“In my opinion action should be taken to prevent future deaths and I believe you, the Secretary of State for Health and Social Care has the power to take such action,” noted the RPD. “Your response must contain details of action taken or proposed to be taken, setting out the timetable for action. Otherwise you must explain why no action is proposed.”

This RPD follows one issued last October in the case of Maeve Boothby O’Neill, who died in Exeter in 2021 at the age of 27 after three hospitalizations failed to halt her decline. In her inquest findings, the coroner in that case found the cause of death to be complications of severe ME. While she took the medical system to task for what appeared to be serious lapses in care at critical periods, she did not assign blame because of the high burden of proof required.

Boothby O’Neill’s father, Sean O’Neill, is a prominent reporter at The Times. He wrote extensively about the case from a personal perspective, and the news organization covered the inquest, which began a year ago this week. The Times recently won a major press award for its efforts to promote ME awareness and reform. (I wrote about Maeve’s life and death here; about the inquest last summer here, here, and here; and about the coroner’s RPD here and here.)

In the recent case, Rookes found that Sarah Jayne Lewis took an overdose because of her despair over her situation, taking note of the timing of her decision. She was 49 and had been diagnosed with the illness a decade earlier. Per the RPD:

“On 8 August 2024, it was Severe ME Awareness Day. Ms Lewis was found deceased at home on 9 August 2024 but as she had not been seen for 2 days, it is likely she died the day before, on a day which was significant for her. Her death was caused by her taking an overdose of [REDACTED] with the intention of ending her own life. By ending her own life, she also ended the profound physical and mental suffering that she had endured…I heard that due to the severe nature of her illness, nothing could really be done to help her. She was therefore left knowing that there is no real treatment for ME, and there is no cure.”

The coroner outlined five “matters of concern,” as follows:

“(1) Despite ME having received some more recent attention, the provision of ME services around the country remains inconsistent. I understand that there are still areas where there is no provision. The evidence revealed that a very important first stage for ME sufferers is that they receive a diagnosis and validation for their severe symptoms. Without provision of a service, there remains a risk that this will not occur. I was told that there is still a belief by some that ME is not real and this has a profoundly negative effect on sufferers and their ability to seek support.

“(2) Historically, there has been little research into ME. As a result of this, nobody knows what causes it, and there is therefore no cure. Whilst I note there has been a small investment recently in research, I was told that this is not enough, and that a perception remains about ME not being real. The resultant effect is that some ME sufferers have no hope that their symptoms will ever improve.

“(3) Other professionals do not understand ME, what it is or the symptoms it causes. This can be a barrier to those with ME receiving support, or accessing care/treatment they need. A hospital passport is now being utilised at North Bristol, which assists sufferers. However, it is not clear that this is being used in all areas, and there remains a lack of understanding about ME. Education and training about this has not been prioritised.

“(4) NICE issued update guidance relatively recently but it is not clear whether this has been fully considered or implemented by commissioning bodies around the country.”

A report like this does not in itself lead to much. It has no teeth to make anyone do anything. It doesn’t help those who are already gone. But perhaps, in a small way, each such document increases awareness and nudges the process forward. Let’s hope so.