RHIANNA MITCHELL: Dire state of eating disorder treatment in Australia needs to change

Australian dad John, not his real name, is a former senior police officer who has witnessed devastating trauma across his career.

But nothing could prepare him for seeing his teenage daughter hospitalised for urgent treatment for an eating disorder last year.

Over 19 days at Perth Children’s Hospital, where she was fed through a nasogastric tube, John wondered what might have been if the GP his daughter saw three weeks earlier had referred her for treatment.

Despite the fact the teenager had been purging, and a school nurse flagging a potential eating disorder, the doctor weighed the 15-year-old and concluded she should return to school.

Instead, she rapidly deteriorated as her parents desperately investigated treatment options. After discovering she did not meet the criteria for admission to hospital they booked an appointment at private, integrated eating disorder clinic Esus Centre.

Esus saw the teen within a week, and she was scheduled to start their intensive program a week later.

But before that could happen, her physical and mental health worsened and she was rushed to the emergency department.

“It was the most traumatic experience I have ever had, it was like she was in a psychosis, hurting herself and saying things like she didn’t feel real,” John recalled.

John is not critical of the GP, knowing now that eating disorders can be difficult to identify and treat, and is full of praise for the “fantastic, supportive and caring” hospital staff.

But the family’s story, one of thousands playing out across Australia every day, highlights how difficult it can be for families to navigate the healthcare system.

While John’s daughter was physically better when she was discharged from hospital, the eating disorder had taken hold of her mind.

This is what he, and other parents I have spoken to while covering this topic, want others to know.

“Physical health is one thing but it’s the mental side of it, every day, every hour, the eating disorder gets deeper and deeper in the young person’s brain. It is so clever, so sneaky, so powerful,” he told me.

It was the mental struggles John and his wife noticed first in their daughter 12 months ago. She was putting immense pressure on herself to perform well in exams and showed signs of anxiety.

Around that time she lost her appetite, and over the next three months her mental health declined. She rarely attended school and when she did, she suffered from panic attacks.

Her parents took her to several GPs and she was prescribed medication for anxiety, before the school nurse raised concerns about a possible eating disorder.

Now, as an outpatient at Esus, she continues to take positive steps in her recovery. John attributes this to the “coordinated, consistent and disciplined approach” at Esus which brings doctors, psychiatrists and allied health professionals under the one roof.

“It takes a consistent and disciplined approach from both the professionals and family or carers to best support the person who is suffering an eating disorder. The eating disorder will try anything to work its way around the treatment to gain control,” he said.

John worries for those families who can’t afford to seek out private care, instead languishing on long wait lists for outpatient hospital treatment or stuck in a limbo where they are not considered “sick enough” for admission.

The dire state of eating disorder treatment was laid bare this week in an Australian-led report which found anorexia nervosa sufferers faced “unacceptably poor outcomes”.

The study, from Australian research institute and mental health charity Orygen and co-authored by Harvard Medical School and King’s College London, found that despite increasing rates of anorexia nervosa, particularly in young people, treatment options were decades-old and had limited efficacy.

It also found patients were suffering due to a narrow healthcare focus on physical symptoms to the exclusion of psychological impacts, while a misconception that eating disorders were not serious and only affected affluent white females meant the health crisis was considered too niche or not serious enough for funding.

Worryingly, authors also noted an attitude in some mental health services that they “don’t do eating disorders.”

Eating disorders are unique in that they are a psychiatric illness, but coincide with severe physical complications. As a result, many patients are being let down by a system growing evidence suggests is ill-equipped and underfunded.

That evidence suggests that what these patients need is a clear treatment pathway; a one-stop-shop with specialists across different disciplines who collaborate to provide inpatient and outpatient care.

Instead, many are getting fragmented, siloed care, with strict eligibility criteria which delays vital early intervention and leads to, as one psychologist put it to me this week, “a tragic and preventable bottleneck.”

Momentum is shifting with governments across Australia prioritising residential, multidisciplinary eating disorder treatment centres. But many of these only cater to 16-year-olds and above, when a growing crisis is emerging in younger children and those in their early teens.

In 2023, there were 1273 deaths in Australia due to an eating disorder. This is more than the national road toll that year, at 1266.

Just as there is a devastating ripple effect across the community for every road fatality, the same is true of eating disorders.

There was a common thread among the parents I have spoken to on this issue in recent weeks, summed up by another father whose child is in the grips of an eating disorder.

“As a parent, you devote yourself to protecting your child as they grow. You do everything you can, outside-in, to give your child the best possible shot. But there’s little you can do, as a parent, when something strikes from inside-out.”

This sense of helplessness was also felt by John.

“As parents we want to solve the problem, but this is the unsolvable problem. I’ve gone from being a solver, to being a listener,” he said.

Decision-makers in our health system also need to listen, because insights from those fighting to overcome these insidious, complex disorders offer future sufferers the best hope.