Calls for action after death linked to ME

Maeve Boothby-O'Neill died at home in October 2021

There are no current plans to address a nationwide deficiency in specialist hospital units and beds for patients with severe chronic fatigue syndrome, a senior doctor has told an inquest.

The hearing in Exeter heard from Dr Anthony Hemsley who said he believed NHS England was not carrying out “any active work on this at the current time” to address the issue following the death of Maeve Boothby-O’Neill, 27.

Miss Boothby-O'Neill suffered from severe chronic fatigue syndrome for a decade before she died at home in October 2021.

Devon coroner Deborah Archer concluded earlier this year Miss Boothby-O’Neill had died from natural causes "because of severe myalgic encephalomyelitis (ME)".

The inquest heard she had been admitted to the Royal Devon and Exeter Hospital three times that year for treatment for malnutrition.

In the last few months of her life, Miss Boothby-O'Neill was unable to chew food and had difficulty drinking because she was not able to sit up.

The coroner said a named healthcare professional should have been appointed to co-ordinate her care as soon as it was realised she required hospital admission.

Resuming the inquest on Friday, the coroner heard evidence from Dr Hemsley, who is the medical director for the Royal Devon University Healthcare NHS Foundation Trust.

He said the trust had not been commissioned to provide a specialist ME service for patients with a severe form of the illness either before or after Miss Boothby-O’Neill’s death.

Dr Hemsley said: “There are no such care pathways for severe and very severe chronic fatigue syndrome at the Royal Devon.

“Neither is there any physical location to care for patients in that way specifically within a hospital setting.

“The recommended physical requirements are beyond reasonable for a standard secondary care acute hospital."

He said there will be "no such admissions unit or bed" within Devon or the South West region or nationally.

“It is certainly not within my gift to provide that level of service.”

Preventing future deaths

Ms Archer confirmed she would send a prevention of future deaths report to the Department of Health and Social Care, NHS England and other bodies after the inquest.

These reports are sent when a coroner thinks action is needed to protect lives.

Miss Boothby-O’Neill's mother Sarah Boothby had previously said her daughter's death was "wholly preventable" and her local hospital failed in its duty of care - claims the Royal Devon and Exeter NHS Foundation Trust denied.

The coroner will send a prevention of future deaths report

'Hopeful for change'

After the hearing her father Sean O'Neill said the report to prevent future deaths could "hopefully point towards reform" and tackle what he described as a "blindspot in this terrible illness that medicine and science struggle to recognise".

He said: "I'm really hopeful it will bring about change.

"It's been three years since Maeve died and there's been very little change so far.

"Hopefully the coroner sparks something that will drive change forward."