It has been reported that responses have been received from parties named in the assistant Coroner’s preventing future deaths report issued in light of the death of Maeve Boothby O’Neill.
The Department of Health and Social Care, NHS England, the National Institute for Health and Care Excellence (NICE), the Medical Research Council (MRC), the National Institute for Health and Care Research (NIHR), and the Medical Schools Council were named by the assistant Coroner who found that during the course of the evidence at Ms Boothby O’Neill’s Inquest that it became clear
- that there were no specialist hospitals or hospices, beds, wards or other healthcare provision in England for patients with severe ME.
- that there was no current available funding for the research and development of treatment and further learning for understanding the causes of ME.
- there was extremely limited training for doctors on ME and how to treat it – especially in relation to severe ME.
- that the 2021 NICE guidelines 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.
The Times has summarised the responses to reveal
- NICE will review the evidence on dietary management and strategies such as tube feeding for patients with severe ME to examine whether its guidelines need amendment.
- Education of medical professionals about patients, who have often been stigmatised, is to be increased.
- Medical schools are being encouraged to provide undergraduates with direct patient experience of ME, and an NHS e-learning package about the condition will be promoted.
- The national medical director of NHS England, indicated that a “stocktake of existing CFS/ME services in England is being undertaken as an initial step” with a specific working group having been set up to determine if extra support was required.
- The Government’s oft-delayed, Delivery Plan fro ME/CFS, which aims to improve the experiences and outcomes for people with ME, is not now to be published until March 2025.
- Andrew Gwynne, the health minister, has committed to better research “with the aim of better understanding the causes, identifying new treatments and improving patient outcomes” and to “identify new opportunities to increase research in this area”.
Sean O’Neill, Ms Boothby O’Neill’s father, gave his response to the actions by saying
It is a positive sign for ME sufferers that all these public bodies have listened to the coroner and responded to her findings ….. However, the actual responses are lacking substance. There is no sign that anything will be done to tackle the coroner’s main concern — that care provision for people with severe ME is ‘non-existent’ in the NHS. And it is upsetting to hear that the Department of Health’s delivery plan on ME appears to have been delayed again until March 2025 — almost three years after work on it began when Sajid Javid was health secretary.
Responses
The Courts and Tribunals Judiciary website has been updated to provide responses received by cited bodies to the Assistant Coroner’s Prevention of Future Deaths Report and show just how far matters need to change before real lessons are learned from the death of Ms Boothby O’Neill. The Medical School Council following from the GMC Content map referring to the disease as Chronic Fatigue Syndrome and funders hailing deCodeME and the Top Ten Plus Priority setting partnership as proof of their commitment to ME/CFS research.
- Prevention of Future Deaths Report
- Response from NICE (21 November 2024)
- Response from NHS England (27 November 2024)
- Response from DHSC and NIHR (2 December 2024)
- Response from MRC (16 October 2024)
- Response from Medical Schools Council (26th November 2024)
Inquiry Opens | 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 |
