Sarah Boothby’s Statement to the Inquest

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 clearly showed she was dehydrating, the consultant reported her kidney function was good and so no action would be taken.

After Campling retired, Maeve’s new GP, Dr Lucy Shenton, did everything she could to help Maeve. Our community health teams were familiar with the revised NICE guideline for ME. All were agreed: Maeve could neither recover nor stabilise without better nutrition and hydration than I alone could provide. We all relied upon the RDE to instigate this treatment. Why they did not do this I cannot say. They seemed to be helpless, even though they had direct access to the best qualified expert advice available in the UK.

After being discharged from her final admission Maeve was deeply distressed. She had not been given the treatment she needed. Shortly before her return home for the last time Maeve became unable to tolerate the prescribed liquid nutrition. This was typical ME symptom exacerbation. At home, she realised she would not survive another admission without the appropriate tube feeding persistently denied her. The hospital would not commit to this. Maeve said she did not want to die in hospital. We had tried our best with three hospital admissions, she said, but had failed each time. If she had to die from starvation with severe ME, she wanted it to be in the familiarity of home and the care of those she loved. She wanted more than anything, she said, for a loving hug. By then it was too late for that, hypersensitivity made all touch excruciatingly painful. The long awaited adult safeguarding enquiry was finally convened. After first suggesting I had induced or fabricated Maeve’s symptoms and insisting Maeve prove her mental capacity and mental health were both sound, her family were eventually invited. The hospital failed to attend every meeting. By this stage Maeve was starving to death. She knew it. I knew it. Her father knew it. Weir knew it. Shenton knew it. How the RDE did not recognise this as the inevitable outcome of inadequate hydration and nutrition must be for them to answer.

After Maeve died, Shenton told me she had never seen anyone so badly treated by the NHS. From observation as a daily visitor to Maeve in hospital, and her full-time carer at home, it seemed to me the consultants responsible for her care at the RDE were not trying to save Maeve’s life. From her first admission in March, to the safeguarding meeting they failed to attend in September, RDE hospital staff overlooked the severity of her physical presentation. They never assessed her functional ability in hospital. They always left it too late to act. They refused to consider NG feeding when she was well enough to sit up for it in March 2021. They refused to take advice from Dr William Weir, the only ME specialist for adults in the UK in May 2021. They refused to consider Total Parenteral Nutrition after leaving it too late for other types of tube feeding. Every time they discharged her to my sole care for support with hydration and nutrition. It was as if the hospital either did not know what its role was supposed to be in Maeve’s care, or did not accept it had a critical role in her care.

Aspirations for the future

Maeve wanted to live. Illness had prevented her from travelling the world but in 2017 she had a short essay published by the London Review of Books. ME had not impaired her discipline, scholarship or imagination. Writing was an activity she could pace. Her plans for the future changed from international affairs to writing and having published a series of literary novels set in the 1920s on Dartmoor, where she had grown up. These novels were historically accurate, covering the economic and social legacies of the first world war, including women’s suffrage, Irish independence and early 20th century spycraft. They were all plotted and a first draft of the first book almost finished. This was critically well received. Maeve had younger siblings, a family and friends who loved her dearly. The severity of her illness prevented her from seeing them socially but, to the day she died, she remembered every one of them with the most thoughtful, generous and appropriate gifts and messages possible. She had an abundance of creative talent, humour and intelligence. She was loved and cherished. She wanted to live. She did everything she could to survive. I did everything I could to support her.

Maeve died unable to eat or drink without the medical intervention (tube feeding) that could have saved her life. She had a good appetite. She was hungry all the time, enviously asking me what I would be eating and making menu suggestions for meals she would have eaten if she could. She had full mental capacity. Her mental health was good. Her only diagnosis was ME. Severe ME was the only reason she could not sit up, chew or hold a cup to her lips. She was starving hungry and she did not want to die. We were told by Shenton, community nurses, and dietitians that tube feeding was supported in the community yet Maeve was never offered this life saving treatment. She was sent home without it and died. I am very concerned that this could too easily happen again.

(View the original post at virology.ws)