When the assistant Coroner who presided over the Inquiry into the death of Maeve Boothby O’Neill stated that “During the course of the inquest the evidence revealed matters giving rise to concern. In my opinion there is a risk that future deaths could occur unless action is taken.” it prompted her to take the highly unusual step of issuing a Prevention of Future Deaths Report. 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 and responded to her areas of concern and highlighted actions to be taken.
On 27th January 2025, Alison Bennett MP tabled a Written Question (UIN 26770) requesting an update on progress being made which was answered by Andrew Gwynne MP Parliamentary Under-Secretary (Department of Health and Social Care).
Q – To ask the Secretary of State for Health and Social Care, with reference to Coroner Deborah Archer’s report entitled Maeve Boothby O’Neill: Prevention of Future Deaths Report, reference 2024-0530, dated 7 October 2024, what steps he has taken to ensure that the (a) care for patients and (b) training available for (i) GPs, (ii) hospital doctors and (ii) other health workers on treating patients with myalgic encephalomyelitis and chronic fatigue syndrome is adequate.
A – We are committed to improving care and support for people with myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS). We recognise how devastating the symptoms can be, and the significant impact they can have on patients and their families.
The Department has reconvened the ME/CFS Task and Finish Group, including senior Department and cross-Government officials, ME/CFS specialists and representatives from NHS England, the National Institute for Health and Care Excellence, the devolved administrations, and ME/CFS charities and organisations. With stakeholder engagement via the ME/CFS Task and Finish Group, we are developing the final delivery plan for ME/CFS, which we aim to publish by the end of March. The plan will focus on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease.
The Department is also working with NHS England to develop an e-learning programme on ME/CFS for healthcare professionals, with the aim of supporting staff to be able to provide better care and improve patient outcomes. Sessions one and two of the e-learning programme are now available. The third session will become available later in 2025.
The Medical Schools Council will promote the NHS England e-learning programme on ME/CFS to all United Kingdom medical schools, and encourage those medical schools to provide undergraduates with direct patient experience of ME/CFS. The General Medical Council (GMC) is the regulator of medical schools, and it is important that education is reenforced at different stages of medical training. Royal colleges play an important role in this. The GMC has included ME/CFS in the content map for the new national exam, so all medical schools will need to teach it as a subject.
NHS England is currently undertaking a stocktake, commissioned in September 2024 and due at the end of January 2025, that will provide a more accurate, in-depth overview of the position of post-COVID-19 services across England. The scope of this commission has been extended to include ME/CFS services.
Therefore, much lies in the contents of the oft-delayed and still being discussed Delivery Plan. What will a Gwynne heralded boost in ME research actually encompass or will the Plan merely tweak at the edges of real need? What can be stated is that confidence cannot be high in the GMC content map which actually lists Chronic Fatigue Syndrome and neither ME or ME/CFS. This does not bode well for a new era of educational enlightenment for healthcare professionals. In fact, when the Schools Medical Council responded to the Prevention of Future Deaths Report, they referred to the disease as chronic fatigue syndrome/ME in some sections and CFS in others.
