Update: The ME Association has now written to Dr Hemsley from the Royal Devon and Exeter Hospital. See below.
The mother of a woman who died after being discharged from hospital with Myalgic Encephalomyelitis (ME) says the NHS has no way to treat the condition. Maeve Boothby-O'Neill died aged 27 at home in Exeter in October 2021. A recent legal hearing into Maeve's death heard there was a gap in NHS services for severely ill ME patients.
By Jen Smith, Health Correspondent, BBC Spotlight, 19 December 2023
The Department of Health said it recognised ME could be incredibly disabling and it was committed to improving care and support. Maeve's mum, Sarah Boothby, believes her daughter's death could have been avoided.
Maeve was described as a happy and talented child who loved to learn and excelled at school. “She was very able and talented,” Sarah said. “She had a good ear for music and, as she grew up, her teachers loved having her in their class because she was so bright and interested.” But at the age of 12 a viral infection left Maeve with a feeling of exhaustion that got significantly worse.
Maeve was hospitalised three times but each time she was discharged from the Royal Devon and Exeter Hospital into her mum Sarah's care because it was felt she was deteriorating in hospital. Sarah said she wanted to know: “How did my daughter die? How could the NHS, how could the hospital, how could all of those people get it so badly wrong?”
An inquest into Maeve's death has been beset by delays and is now scheduled for next year. But a preliminary hearing – known as a pre-inquest – heard written evidence from the Medical Director of the Royal Devon University Healthcare NHS Foundation Trust. Dr Anthony Hemsley stated there was a lack of specialist services for patients with severe ME.
He wrote: “The trust was not commissioned, and therefore not resourced, to provide inpatient treatment for severe ME.” Dr Hemsley stated that there was “no opportunity to refer Maeve to a specialist inpatient centre”. He added: “There is a lack of a commissioned specialist service for severe ME both locally, regionally and nationally.” “In order to rectify this situation, action is required at the highest level.”
The BBC approached the Royal Devon University Healthcare NHS Foundation Trust for an interview with Dr Hemsley but it said it could not comment on details. “We would like to express our deepest sympathy to the Boothby-O'Neill family for their loss and our thoughts are with the family throughout this time,” a spokesperson for the trust said. “We are fully engaged with the inquest and whilst the coroner's inquest is ongoing, it would not be appropriate for us to comment at this time.”
Sarah doesn't blame the trust and said Maeve was cared for by many excellent clinicians. The problem, she said, was system-wide. “It was Maeve's diagnosis that was the barrier to treatment because there's no policy to treat ME in the NHS,” she said.
The Department of Health said it was making improvements. “We have been consulting on a cross-government delivery plan for England which will include an expansion of research, better education of professionals, improvements in attitudes towards the condition and improvements to service provision,” it said.
ME Association writes to Dr Hemsley
With regard to the statement by Dr Hemsley, Medical Director of the Royal Devon University Healthcare NHS Trust, to the pre-inquest:
Dr Anthony Hemsley stated there was a lack of specialist services for patients with severe ME. He wrote: “The trust was not commissioned, and therefore not resourced, to provide inpatient treatment for severe ME.” He also said that there was “no opportunity to refer Maeve to a specialist inpatient centre”, and added: “There is a lack of a commissioned specialist service for severe ME both locally, regionally and nationally… In order to rectify this situation, action is required at the highest level.”
We wrote to Dr Hemsley asking him to outline what action is now being taken ‘at the highest level' in Devon to ensure that people with severe and very severe ME/CFS will now be receiving the type of hospital-based assessment, care and management that is recommended in the NICE Guideline, especially when this requires admission to a hospital ward. We'll let you know when we get a response.
Dr Charles Shepherd,
Trustee and Hon. Medical Adviser to the ME Association.