Maeve Boothby O’Neill: Prevention of Future Deaths Report

Other related deaths

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Date of report: 07/10/2024 

Ref: 2024-0530 

Deceased name: Maeve Boothby O’Neill  

Coroners name: Deborah Archer 

Coroners Area: Devon, Plymouth and Torbay  

Category: Other related deaths

This report is being sent to: Department of Health and Social Care | NHS England | National Institute for Health and Care Excellence | Medical Research Council | National Institute for Health care and Research | Medical Schools Council

REGULATION 28 REPORT TO PREVENT FUTURE DEATHS
THIS REPORT IS BEING SENT TO:

1. [REDACTED] / [REDACTED] Department of Health and Social care
2. NHS England
3. NICE
4. Medical Research Council
5. National Institute for Health care and Research
6. Medical Schools Council  
1CORONER
 
I am Deborah Archer, Assistant coroner, for the Coroner area of The County of Devon, Plymouth and Torbay.  
2CORONER’S LEGAL POWERS
 
I make this report under paragraph 7, Schedule 5, of the Coroners and Justice Act 2009 and Regulations 28 and 29 of the Coroners (Investigations) Regulations 2013.
3INVESTIGATION 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 further heard 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 non-existent and that being placed on a ward that did not have expertise in her condition made her admission to hospital very 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.
4CIRCUMSTANCES 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.
5CORONER’S CONCERNS

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. In the circumstances it is my statutory duty to report to you.
 
The MATTERS OF CONCERN are as follows. –

(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 encephalomyelitis (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 guideline 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.
6ACTION SHOULD BE TAKEN

In my opinion action should be taken to prevent future deaths and I believe you have the power to take such action.
7YOUR RESPONSE
 
You are under a duty to respond to this report within 56 days of the date of this report, namely by 3rd December 2024. I, the Coroner, may extend the period.
 
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.
8COPIES and PUBLICATION
 
I have sent a copy of my report to the Chief Coroner and to the following Interested Persons – [REDACTED], [REDACTED], Barnfield Surgery, Devon County Council, Royal Devon and Exeter NHS Trust. I have also sent it to the ME Association, [REDACTED], NHS Southwest England and Steve Moore, Chief Executive of the Integrated Health Board, who may find it useful or of interest.
I am also under a duty to send a copy of your response to the Chief Coroner and all interested persons who in my opinion should receive it.
 
I may also send a copy of your response to any other person who I believe may find it useful or of interest.
 
The Chief Coroner may publish either or both in a complete or redacted or summary form. He may send a copy of this report to any person who he believes may find it useful or of interest.
You may make representations to me, the Coroner, at the time of your response, about the release or the publication of your response.
9Amended 8th October 2024       
Deborah Archer