Almost 3 years after her death, a full Coroner’s Inquiry will open on 22 July 2024 examining the circumstances surrounding the death of 27-year-old Maeve Boothby O’Neill from severe ME. The two-week Inquiry will look at her ‘care’ at the Royal Devon and Exeter Hospital, delays in palliative care, and the wider lack of understanding in the medical community of ME/CFS.
Ms Boothby O’Neill had been affected by ME/CFS since a viral infection when she was 12 but it reportedly took 5 years before she was diagnosed and throughout her illness she, and her family, battled to convice healthcare professionals that her illness was both real and physical. This lack of recognition, her parents claim, also caused delays in her receiving end-of-life care. Her condition deteriorated drastically in the seven months preceding her death in October 2021. She was hospitalised three times but each time she was discharged from the Royal Devon and Exeter Hospital into her mum’s care because it was felt her health was deteriorating in hospital. It is reported that Maeve was bedbound and malnourished, with the simple act of chewing proving exhausting. She rejected a fourth admission feeling there was no prospect of treatment.
Legal hearings in December 2023 have already heard of the gaps in NHS services for severely ill ME patients. A pre-Inquest hearing was provided with written evidence from the Medical Director of the Royal Devon University Healthcare NHS Foundation Trust which revealed that “The Trust was not commissioned, and therefore not resourced, to provide inpatient treatment for severe ME” and there was “no opportunity to refer Maeve to a specialist in-patient centre”. “There is a lack of a commissioned specialist service for severe/very severe ME/CFS both locally, regionally and nationally” and that “In order to rectify this situation, action is required at the highest level.”
As Maeve’s father, Sean O’Neill, senior journalist at The Times and The Sunday Times, said
Imagine that this was a different illness. Imagine a hospital saying that it was not commissioned and therefore not resourced to provide inpatient treatment to those with severe cancer, those with severe heart conditions, those with another severe disease. It is difficult to conceive.
BBC online reported comments from ME Research UK Vice Chair Sue Waddell that there is a huge lack of understanding about ME/CFS within the medical profession and that the illness has been stigmitised and denigrated with no doctor-led Centres of Excellence in the UK.
Mr O’Neill was interviewed on BBC Radio 4 ‘Today’ programme on Saturday 20 July 2024 (39.50 to 46.21) and discussed the lack of care, treatment and disbelief encountered within the NHS especially to those with severe ME. In addition, the first day of the proceedings was discussed by Channel 4 news.
Speaking to The Telegraph (paywall) Mr O’Neill said
One of the things that has always puzzled me is why so many doctors are wedded to the idea that ME is not a real illness, that it’s all in the patients’ head …….. I hope the inquest will show that ME is very real, that it can be fatal and that there must be a change in medical culture, medical education and NHS provision to recognise that.”
Former Heath and Social Care Secretary Sajid Javid in The Times demanded that ‘Labour must deliver on ME as patients suffer without a cure’ in a call which coincided with the landmark inquiry into Maeve’s death. (Paywall)
The party of government may have changed, but the urgency to act remains. There is clear action that can be taken, and an entire community looking for hope. There will be important lessons to learn from the tragic experience of Maeve Boothby-O’Neill. This new government should listen carefully, and then finally deliver this new strategy without delay.
Sajid Javid was referring to the Delivery Plan process which was announced over 2 years ago. A draft Delivery Plan was produced and consulted upon with responses made by the Ocober 2023 deadline. Neither results of the consultation process nor a final Delivery Plan have yet been released. Prior to the July 2024 election, it was confirmed only that “The consultation responses, along with continued close engagement with stakeholders, will inform the development of the final delivery plan, which we aim to publish later this year.”
Week 1 Quotes and Media Coverage | Week 2 Quotes and Media Coverage | Inquiry Ends | Coroner’s Conclusions | Coroner to Issue Prevention of Future Death Report | Actions Reported
