‘Young people need help’: parents call for change in eating disorder care

Eight and a half years since Averil Hart died, her father asks when well-meaning policies will be turned into action

It is more than eight years since Averil Hart died after being found passed out in her university room, but the words left in her diary are etched in her father’s mind. “She said: ‘dear God please help me’ and that was four or five days before she collapsed,” says Nic Hart. “It sums up what many young people desperately need. They need help. Here we are eight-and-a-half years on and what has changed?”

Averil, who was diagnosed with anorexia aged 15, was taken to Norfolk and Norwich University hospital at 19 in a “severely malnourished” state but received no nutritional or psychiatric support during her four-day admission, according to an inquest into her death. She was then urgently transferred to Addenbrooke’s hospital in Cambridge.

The coroner found a litany of failings. She was treated by doctors who knew “practically nothing” about anorexia. There had been no follow-up from the local eating disorder team and a failure to provide life-saving treatment. The inquest was the last in a series of coroners’ examinations of five women who died from eating disorders while in the care of the NHS in the east of England.

“I suppose listening to the NHS arguments on delivery … they would say it is an organisation of a million people and these things [real changes] take time,” her father says. “But you wonder what it takes to turn all these well-meaning policies that seem to come up from time to time into action.”

Hart says we need to learn from how the UK has tackled potentially life-threatening conditions such as sepsis and think about how we can “train clinicians to turn this around quickly”. He adds that the Covid pandemic has shown the NHS “can get galvanised” where there is a will to do it.

The situation for patients is “patchy” with “plenty of gaps in the service”, says Hart, and treatment varies depending on where you are based. “There are examples of teams working very well … [but] if you look at Averil’s case, one trainee looking after Averil went away on holiday and the team did not know who she was.”

The main problem unearthed during his daughter’s inquest, and that of other women who were failed by treatment, was the need to train clinicians, Hart says. “If clinicians do not recognise the illness and are not monitoring those with eating disorders then nothing will change.”

Solutions are needed soon, with data showing a dramatic rise in the number of people seeking help during the coronavirus pandemic while demand outstrips supply, and parents have to look after extremely unwell children at home.

Hart puts the rise down to young people being under more stress, including from social media. “Maybe these pressures have always been there but they are more abundant these days.”

Another father told the Guardian how his 14-year-old son developed an eating disorder in lockdown. “He started exercising obsessively. So he would do PE with Joe Wicks and so on, and would go on and on and on for an hour and a half to two hours, and he wanted to go for long walks and do a half-marathon,” he said.

“He has always been a good eater, although sensitive to fats and butter, but his eating became more obsessive. He was eating less and less. As a consequence of that during the first lockdown, his weight tumbled and it resulted in real mood changes.”

His son eventually got help, saw a counsellor and is now “responding well”, his father said. He added that his son struggled with a lack of order and structure that came when schools closed. “He does not really do social media. He plays video games with friends but I am not sure where the pressure comes from,” he said.

The impact of seeing your child desperately unwell and dying from anorexia sent “earth tremors” through the family, Hart says. “Up until Averil’s illness, I felt blessed … then an illness like this comes along and tears the family apart,” he says.

An NHS spokesperson said: “NHS community eating disorder services continue to step up through the pandemic and have treated more children and young people in the last year than ever before. Early intervention is key and the NHS is investing in a significant expansion of eating disorder services for adults as part of year-on-year increases in funding for community-based mental health.”


Sarah Marsh

The GuardianTramp

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