Hospital has left my daughter in ME agony, claims mother

A mother has said an NHS hospital failed to offer her daughter adequate pain relief in a pattern of poor treatment that left the teenager suicidal.

Ella Copley, 17, from Tingley, West Yorkshire, has suffered from ME (myalgic encephalomyelitis), sometimes known as chronic fatigue syndrome, for seven years. She has been in Leeds General Infirmary since March, when she was taken there by ambulance with an infection later diagnosed as sepsis.

Her mother, Joanne McKee, 49, said the treatment Ella had received “feels like neglect and abuse”. She has posted videos on social media of the teenager screaming in pain when medicine is given by nasogastric tube. “I don’t think they believe that her pain is real at all,” she said.

McKee said doctors had told Ella she was “hypersensitive”, and suggested that she stroke a piece of material against her skin as part of a desensitisation programme. “I have just never, ever known anything so dismissive,” McKee said.

In an interview with Times Radio, she added: “No one has any understanding of her conditions. That really is the issue."

The charity Action for ME has written a letter to the hospital’s chief executive raising concerns over Ella’s case. In it, Sonya Chowdhury, chief executive of the charity, said she was “aware of several other situations that bear similarity with Ella’s illness and care”.

Questions have been raised over the treatment of Maeve Boothby-O’Neill, who died in October last year. Her death will be the subject of an inquest in Exeter next month.

Read full story (paywalled)

Source: The Times, 18 July 2022