The NHS’s inability to care for seriously ill patients with severe cases of the debilitating disease ME requires urgent attention, a hospital chief has told an inquest. Dr Anthony Hemsley, medical director of the Royal Devon & Exeter hospital, revealed in written evidence there was no NHS guidance to staff and no specialist services anywhere in the country to handle acute ME cases. Hemsley said the “gap in service” needed to be rectified and “action is required at the highest level.”
By Will Humphries, Southwest Correspondent, The Times, 27 November 2023.
Maeve Boothby-O’Neill, the daughter of the Times journalist Sean O’Neill [pictured above], died two years ago after becoming bedbound and finding the simple act of chewing exhausting. She had three admissions to the Royal Devon & Exeter Hospital before her death and an inquest will be held to examine some of its clinical decisions, including the alleged refusal to offer procedures that might have saved her life.
O’Neill told the coroner’s court:
“When Maeve concluded that the hospital was unable and indeed unwilling to provide the treatment she needed, she was right.
“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 quite impossible to conceive.”
The GP, who was committed to her care, wrote: “Several doctors involved in her care stated they do not believe ME is a medical problem.”
Boothby-O’Neill’s family want Deborah Archer, assistant coroner for Plymouth, Torbay and South Devon, to hold an Article 2 inquest to consider whether systemic or policy based failures could have caused her death. Article 2 of the European Convention on Human Rights protects people’s “right to life”.
If someone has died while under the care of the state then Article 2 can be engaged, which allows the coroner to look deeper at the context and background of the death than in a normal inquest.
NICE Guideline Recommendations
- The NICE Guideline on ME/CFS has clear recommendations to the NHS and social care services on what should be done to care for people with severe and very severe ME/CFS both in and outside of a hospital setting. The ME Association is working with the NHS and social care providers to try and ensure all services are compliant and that everyone with ME/CFS receives the best standard of healthcare.