** Trigger warning - upsetting content, death **
Today marked the conclusion into the tragic death of Maeve Boothby O'Neill, who had severe ME, in October 2021.
Over the past two weeks, the inquest, held at Exeter Coroner's Court, has heard evidence and statements from numerous individuals and witnesses, including Maeve's parents and healthcare professionals involved in her care.
The hearing has resulted in wide-spread media attention and focus into the significant lack of care available to patients with severe ME across the UK, and the specific failings of not only the Royal Devon and Exeter Trust, but the wider health system, with a Consultant who gave evidence during the Inquest acknowledging that:
“Even today there are people who have been through historic medical schools who don’t recognise it [ME] as a disease… That’s a travesty this hearing can address and that will be a massive step forward.”
The coroner provided a very detailed overview of all the evidence and chronology of events from Maeve’s first diagnosis of ME to involvement from her GPs, hospital admissions and the last few days of Maeve’s life. The recorded cause of Maeve’s death will be one of natural causes, specifically malnutrition which was caused by severe Myalgic Encephalomyelitis. It will be stated that Maeve died at home after three admissions to hospital where they were unable to treat her Myalgic Encephalomyelitis. Repeatedly through her reading of findings, the coroner outlined her hope that the inquest will lead to improved care and support for people with ME in the future.
The coroner highlighted the lack of knowledge and understanding of ME and how to treat it on a number of occasions. She stated that there were several factors, including delays and communication errors between professionals, which may have contributed to Maeve’s deterioration, but she could not say the factors caused or contributed to her death. Nevertheless, they were important to note.
The coroner stated that she did not find any of the clinicians disbelieved that ME was a real illness or that they held a concerning view of the illness. She highlighted some concerns about record keeping and asked the NHS Trust to ensure that they address all of her concerns, if not already, in the hearing on 27 September on the prevention of future deaths. She also highlighted that a named healthcare professional should have been appointed to coordinate Maeve’s care as soon as it was realised she required admission to hospital and that it was ‘unrealistic’ for Maeve to have been discharged home on the second (of three) occasions from hospital without a 24-hour care package in place.
The coroner was unable to conclude that Maeve failed to receive the care that she needed as someone with severe ME because of the lack of knowledge that currently exists. Despite this, more work must be done to ensure the factors that led to Maeve’s death are never repeated and that people with ME are properly cared for.
Our Chief Executive, Sonya Chowdhury, stated “The coroner took three hours to share her findings, and it was distressing to hear the evidence shared during the inquest. While Maeve’s death has been recorded as one of natural causes, malnutrition was cited as caused by Myalgic Encephalomyelitis. While this will sadly have no impact now for Maeve, or her family, I hope that it will for others with ME of varying degrees of severity. The inquest highlighted what many of us already know – the monumental challenges that people with ME face in accessing support and care, including those in hospital. This must change.
“We heard that Maeve’s GP, Dr Shenton, worked tirelessly to try and secure the support Maeve needed and, sadly, this has now impacted on her own health. While there is some excellent professional practice more widely, we must do more to expand and embed this. It was clear today that there is an urgent need to accelerate research and to redress the lack of knowledge and understanding that exists so that doctors and others can better support people with ME. We hope that the insight and learning from this inquest is not lost and that Maeve’s legacy can live on through changes that are brought for people with ME.”
As we heard earlier this week, Andrew Gwynne, minister for public health and prevention, said:
“Every patient deserves to have their condition understood and treated to the highest standard, and this is a heart-wrenching example of a patient falling through the cracks." “Maeve and her family were forced to battle the disease alongside the healthcare system which repeatedly misunderstood and dismissed her. “I am committed to improving the care and support for all those affected, and we intend to publish a final delivery plan this winter which will focus on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease.”
