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Article: Prevention of Future Deaths Report issued following death of woman with very severe ME

Posted on October 29 2024 at 15:27

Image shows a hospital hallway and a medical staff dressed in scrubs walking away from the camera. ME Association

 

By Ewan Dale, trustee of NAoS and the ME Association 

A Prevention of Future Deaths Report was issue by a Devon Coroner following an Inquest on the death of a 27 year old woman with very severe ME.

Bed-bound and sensitised to sound and light etc., she had increasing problems with being able to feed and was admitted to hospital 3 times. Other than tube feeding, they did not manage to meet or even recognise her needs. On one stay, a psychiatrist claimed she had an extreme case of illness behaviour. 

So on each occasion, she sought to be discharged and returned home, but there was no agreement to support tube feeding at home - (apparently due to a doctrinaire imbalance in risk assessment) - and she effectively died of starvation.

There was no medical experience or recorded practice found by the hospital to apply to her care, and the need to provide sensory isolation was not met to any degree.

Edinburgh University Chair of Medical Bioinformatics, Professor Chris Ponting, who is research lead on the MRC & NIHR-funded DecodeME study, has written in the UK Universities academic articles platform The Conversation, giving a comprehensive summary of the circumstances around this case, the Inquest and the Prevention of Future Deaths Report. 

This has not been the first case of a patient with very severe ME dying in similar circumstances, and the circumstances she presented to hospital staff are not unique to such patients, so why has finding suitable examples of treatment approaches been such a problem, and how many conditions produce these extreme cases? 

The Prevention of Deaths Report identified the lack of specialised care or facilities, the lack of appropriate medical education, the lack of guidance on many aspects of treating severe ME in the 2021 NICE Guideline NG206, and the lack of funding for research to identify the disease processes and treatment effects.

The Coroner sent her Report to the Dept of Health & Social Care, NHS England, NICE, MRC, NIHR & Medical Schools Council (and to regional NHS service providers), who she charged with responding by December 2nd.

There are currently an estimated 60,000 ME sufferers in Scotland following Covid-19, and an almost complete lack of suitable specialist services, and of medical recognition and knowledge for these patients. As part of the Scottish Government’s Neurological Framework programme, a medical education programme, Learn About ME is currently underway.

Article by Ewan Dale, 

Trustee of NAoS and the ME Association 

meassociation.org.uk 

Registered Charity no. 801279

 

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