Eating disorder deaths need to be recorded on a national register, MPs are urging, as experts warn of an underreported “crisis” in the growing number of people in the UK experiencing life-threatening disorders.
While Office for National Statistics figures show 36 people died in 2019 from conditions such as anorexia, there are concerns this underestimates the true toll. A high-level US study gives estimated data on death rates that when transposed to the UK indicates that the annual death rate could be about 1,860 people a year.
MPs from across the political spectrum are calling for better research and data collection on conditions such as anorexia and bulimia. Data analysis by the Guardian shows there is also a hidden epidemic among men and growing waiting times for children and young people seeking help.
Caroline Nokes, the Conservative MP for Romsey and Southampton North, said: “I am concerned that deaths from eating disorders are collected in different ways across the country, which may well have resulted in underreporting. I have asked the Department for Health and Social Care if they will consider some method of central reporting.”
Olivia Blake, the Labour MP for Sheffield Hallam, said: “Even with the limited data available, we know that eating disorders are the biggest killer of any mental health condition. We can only predict that the exact numbers are in reality much higher.”
Agnes Ayton, the chair of the eating disorders faculty at the Royal College of Psychiatrists, said eating disorders were not always the direct cause of death – for example, someone with severe malnutrition might die from organ failure – so the impact risks being undercounted. “We need to train clinicians and other professionals such as coroners, who have the responsibility of recording these deaths in both acute and inpatient settings but also at home,” she said.
Experts warned earlier this year that the pandemic had sent levels of eating disorders soaring as people found themselves isolated during lockdowns and were left feeling out of control.
Official statistics on deaths are based on the data collected as part of civil registration, which are based on the medical certificate of cause of death completed by a doctor, or the conclusions of a coroner following an inquest.
Coroner Sean Horstead recently expressed concern over a possible “significant under-reporting” of eating disorder deaths. He said in a report looking at the deaths of five women that there was a “lack of robust and reliable data” around the illness.
The coroner said that while eating disorders had the highest mortality rate of mental illnesses, he was “concerned that there may also be a significant underreporting of the extent to which eating disorders have caused or contributed to deaths”.
Concern about a lack of research comes amid what has been dubbed a “crisis” in the growing number of people experiencing eating disorders who cannot get timely treatment.
Data analysis by the Guardian shows a huge rise in the number of men experiencing problems, with NHS Digital data showing those presenting at hospital rose from 911 in 2016 to 1,825 in 2020.
Ayton said this was likely to be the “tip of the iceberg” with eating disorders among men often a “hidden issue”.
Ayton said men could experience eating disorders for decades and then present at clinics. “The admissions data is really the tip of the iceberg,” she said, adding that they faced increasing body image pressure and were also affected by anti-obesity messages from the government.
Separately, figures show a sevenfold increase in the number of children and young people waiting for urgent care for an eating disorder and a 158.6% increase in those waiting for routine treatment compared with the same period last year.
Nokes, who as the chair of the women and equalities committee helped to produce a report highlighting the impact the pandemic has had on how people view their bodies, said coronavirus had been a trigger as “social interactions and support networks have been ripped away from people”.
She added: “There is a crisis in the number of people suffering from eating disorders but there is also a crisis in their ability to access timely support services … If someone presents showing they have a problem with eating and ask for help, the worst thing to do is turn them away and tell them to wait.”
The minister for mental health, Nadine Dorries, said: “I recognise just how important it is for people with an eating disorder to get the support they need and I urge anyone who needs help to come forward.
“Our commitment to expanding and transforming mental health services in England is backed by an additional £2.3bn a year by 2023-24, in addition to our mental health recovery action plan, ensuring we are offering the right access over the coming years that helps people with a variety of mental health conditions, including eating disorders.”