By David Tuller, DrPH
The two weeks of public hearings in the inquest into the death of Maeve Boothby O’Neill ended on Friday. (The coroner, Deborah Archer, plans to issue her findings on the facts this coming Friday.) Last Thursday, both of Maeve’s parents testified. Her mom, Sarah Boothby, took the stand first. She read most of the statement into the public record, omitting only the brief section that Archer had herself read out at the start of the inquest. (She also didn’t read out a list of questions for the inquest as well as references to support her account.)
Here is the statement as read into the evidence:
Statement on the death of Maeve Boothby O’Neill, 26 August 1994 – 3 October 2021 by her mother, Sarah Boothby.
Maeve died at home, early in the morning on Sunday 3 October 2021, in the company of those she loved. She was just 27 years of age. I am hoping the inquest into her death will explain how she died. Maeve was not expected to die. She did not want to die. Her only diagnosis was Myalgic Encephalomyelitis (ME). Death from ME is extremely rare. Malnutrition in severe ME is common. I believe the evidence shows Maeve is likely to have died from malnutrition and dehydration, because she had severe ME. I therefore believe her death was both premature and wholly preventable. As it is likely that her death could have been prevented, I am hoping the inquest will try to ascertain how three separate admissions to the Royal Devon and Exeter NHS Hospital Trust (RDE) failed to save her life (chronology of events). I would value the opportunity to add to this statement upon receipt of full disclosure of all statements, treatment notes and other materials as part of the process. As an unqualified but concerned observer, it seemed to me the RDE did not respond to the severity of Maeve’s presentation, and failed in its duty of care and missed important opportunities to preserve the right to life; it did not refer to published guidance on ME, and it did not take available specialist expert advice on how to prevent malnutrition in severe ME.
Background
Upbringing and education
Maeve was my only child. She was an exceptional child: walking at ten months; talking before she was two years old; holding the attention of her entire school, including parents, as Narrator of the Christmas play at six years old; writing her own play for children to local acclaim and much laughter at eight years old; in the top three percent nationally for verbal reasoning at fourteen years old; a compelling Jazz singer at fifteen years old; A* student at sixteen years old; A** Russianist at eighteen years old. She loved learning languages. She had a lively and active interest in world affairs. She looked forward to travelling beyond the UK after finishing school. After finishing school she was too severely affected by ME to go travelling or to take up a place at university.
Maeve’s parents separated when she was five years old. She lived with me on Dartmoor and enjoyed frequent, regular contact with her father, Sean O’Neill, until she became too unwell for visits or visitors. We moved to Exeter in 2009. Sean lives with his wife and two younger children in Twickenham.
Medical history
Maeve’s illness was never explained. She was a very healthy, robust, energetic child. Symptom onset was slow, without a noticeable trigger. In adolescence her only presentations were persistent tiredness, and blood pressure so low raising her heart rate could cause her to collapse during physical exertion. PE teachers were concerned for her safety at school. After seeing many doctors and testing negative for all other conditions, Maeve gave up PE completely. She saw a paediatrician for two years in Devon. Her paediatrician told her there was nothing wrong with her; the symptoms were all in her mind. He referred her to a psychologist. Her symptoms persisted. She cut down on all extra-curricular activities, giving up singing in public and socialising at weekends. It took four years to obtain a formal diagnosis. During this time Maeve attended school on a reduced timetable with rest breaks and extra time in public examinations. She was diagnosed with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) at Frenchay hospital in Bristol in 2011. She never had any other diagnoses. She was eighteen shortly after diagnosis and by then so severely affected she was too unwell to leave home.
ME is a highly complex multi-system disease. It affects so many parts of the body modern medicine is challenged to know where to begin understanding it. Maeve’s cognitive ability was, unusually, never impaired. Jessica Guy, Occupation Therapist and team leader at the Specialist ME Service in Devon acknowledged the severity of Maeve’s condition. Guy told us she had never met anyone so unwell with ME and supported Maeve at home for several years. Guy appreciated how highly motivated Maeve was to recover, even if the NHS did not know how to help her. Until she resigned from the service, Guy generously agreed to keep Maeve on her list, so that Maeve could access treatment as soon as it became available. Without medical help, Maeve taught herself everything there was to learn about ME. With the same disciplined diligence she applied to her studies, she followed all the advice available to manage her presenting ME and generally took the best possible care of her mental and physical health. Despite this, Maeve could not achieve the level of rest she needed without a high level of support.
I gave up my career to care for her. In a single parent household these were difficult circumstances for us. I was only able to work part time. Maeve was physically unable to cook, wash up, change her bedlinen, clean her room, apply for and renew her welfare benefit entitlements, make or attend appointments or go outdoors without assistance. We became socially isolated. Repeated attempts to engage Adult Social Care in assessing our needs resulted in nothing. In 2018 I discussed Maeve’s prognosis with her GP, Dr Juliet Campling. Campling advised death from ME was very rare. If Maeve died from it, she said, an inquest would be inevitable. As I have said above, Maeve was highly motivated to recover. She and I concluded her best hope lay in the trickle of new biomedical research being published, and the respondent treatment protocols developed by others with the same symptoms. We knew the Medical Research Council had recently funded Decode ME, the world’s largest genetic study of ME/CFS. We knew NICE was reviewing its guideline for ME. We knew Professor Ron Davis was expediting biomedical research at Stanford through his involvement with the Open Medicine Foundation1. We hoped these developments presaged a long-awaited change in attitude towards the illness; the probability of discovering the cause of ME and, eventually, treatments and a cure. The revised NICE guideline was published in draft in November 2020. We trusted the discoveries in the newer literature (cited in the new guideline) some of them explained Maeve’s presentation, and we understood the epistemological flaws in the psychogenic treatment protocols historically recommended for mild and moderate ME.
In March 2021 Maeve was unable to sit up, hold a cup to her lips or chew. Finally, her doctors knew how to help her; she could be treated by tube feeding. This required hospitalisation. From experience (and by its own admission), Maeve knew the NHS did not know how to treat severe ME, but she trusted it knew how to tube feed. In her experience the NHS had never been able to accommodate her critical need to pace all activities. A hospital admission could make her worse. Her treatment should be transportable home, the only place where pacing and rest could be assured. On this basis she consented to an admission for help with hydration and nutrition only. She made her wishes known as advance decisions in writing and took them with her into hospital. A copy was shared with Juliette Hill, a social work manager assigned by Devon County Council to safeguard Maeve under S.42 of the Care Act.
Maeve was admitted to her local hospital, the RDE, three times in 2021, each time for help with nutrition and hydration. Details of her treatment during these admissions are in the chronology of events, appended. The appropriate form of tube feeding was never provided. The hospital’s response to Maeve’s needs was inexplicable. At least, I cannot explain it. As a family we employed Dr William Wier, ME specialist physician in private practice, and recruited Helen Baxter, advocate with 25% ME charity and co author of an award winning paper on malnutrition in severe ME (op cit), to describe to Devon’s medics how NHS treatment of malnutrition in severe ME is conducted elsewhere in England. The RDE seem to have either dismissed or argued with each of these experts. Yet Weir and Baxter both continue to be directly involved with people living with ME who are as severely affected by the disease as Maeve was. On each discharge, Maeve was sent home to my sole care, her need for support with medical hydration and nutrition unmet. I had to stop work to care for her.
At home it was impossible for me to get enough calories into Maeve from a liquid diet. A range of community based medical staff recognised this. They and I tried to engage hospital staff and Dr David Strain, a research medic who became involved in Maeve’s care, in understanding Maeve’s care needs. Without specialist nutritional intervention Maeve’s deterioration could only continue, yet her continual deterioration across and throughout three admissions seemed to go unnoticed by the hospital. As her muscles wasted and the ME worsened, Maeve became weaker and weaker, unable to speak above a whisper, unable to move, doubly incontinent, and suffering intense pain in her limbs whenever she was turned. As she had feared, hospitalisation exacerbated Maeve’s ME symptoms on every admission. For the first time she became hypersensitive to all sensory stimuli including touch. Her test results were always ‘normal’ and it seemed this was the basis for withholding medical treatment by RDE staff. Even when the hospital record