The Times has an article covering the treatment of a 17 year-old with ME/CFS in hospital in Yorkshire.
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 via a feeding tube into her small intestine. “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. If she was an animal, she would have been put down.”
Ella began complaining of abdominal pain a few weeks ago, and McKee said it was only after an official complaint to the hospital that they agreed to operate, removing 50 stones from her bladder.
McKee said: “Because no one would listen and because she was just in pain, day and night, [Ella] started saying, ‘You guys are leaving me in absolute agony. I will not spend my life in agony. If you won’t help me then I will just take my life. I cannot live like this.’ ” But McKee added that her daughter had “determination and a will to live”.
The teenager, who was an athletic child before developing ME after a viral infection, took her GCSE exams from her bed. She achieved nine at grades A and A*.
McKee claimed that despite being unable to pinpoint the cause of Ella’s symptoms, doctors had refused to accept input from outside experts in ME and related conditions that she had put forward to them. She said: “All [Ella] kept saying is, ‘I am going to die in here.’ It’s the fact that people don’t believe her. We’ve seen over 200 doctors over seven years, and probably only three have ever believed her.
“There are lots of scientific documents to say these conditions cause severe pain — it’s not in Ella’s head. And I do feel a fear for her life. We are going to lose so many more people, if they are not sent to the right specialists.”
Together with Ella, she has decided to go public out of desperation. “I am broken, I have nothing left in the tank,” she said. “But I know if I stop my daughter will die in this hospital.” She said she had been contacted by other mothers whose daughters had died in similar circumstances.
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.
ME campaigners have long fought for the condition to be recognised as a physical illness. Last year they won a long-running battle to get graded exercise therapy removed from Nice treatment guidelines.The therapy pushes sufferers to increase their activity levels in stages, but many people report that it makes their condition worse and causes relapses.
The Department of Health is working on an action plan for tackling ME in Britain — a task that campaigners say is now becoming doubly urgent because of the overlap with long Covid.
Dr Phil Wood, chief medical officer and deputy chief executive at Leeds Teaching Hospitals NHS Trust, said: “We recognise that this is a really difficult time for Ella and her family, and we’re sorry to hear that they feel that we’re not meeting Ella’s needs.
“Our clinical teams are doing everything they can to support them and try to get Ella better as quickly as possible.
We appreciate the support offered by the Action for ME charity and we will be meeting with them to discuss their insight and knowledge in further detail.Dr Charles Shepherd