Melbourne mum Sarah has been supporting her 18-year-old daughter to recover from anorexia nervosa for the past seven years, with help from Sarah’s dad Glenn.
Caring for Elise is a 24/7 job – Sarah is constantly monitoring her daughter, making sure she eats six meals a day, that she’s not secretly exercising in her room or sneaking out for a run at night.
There are times when Elise is so distressed, she needs to be physically restrained to protect her from self-harm.
“It is like a war,” Sarah said.
Elise’s eating disorder started when she was 12, amid the transition from primary school to high school.
During the pandemic, Elise’s eating disorder symptoms intensified.
Sarah thinks the sudden lack of routine and increased time online exacerbated her daughter’s condition.
Elise is not alone.
COVID prompts spike in eating disorders
A recent study in The Lancet found COVID-19 has increased the prevalence of eating disorders globally by as much as 15.3 per cent in 2020, compared to previous years.
From 2021 to 2022 Eating Disorders Victoria (EDV) experienced a 300 per cent increase in demand for its services.
EDV peer worker Gemma De Leo said more than a million Australians were affected by eating disorders each year, yet only a quarter of those people accessed treatment.
“The pandemic has had a huge impact on people with eating disorders whether it be new diagnosis, new presentations, people that are in recovery, their symptoms have worsened, or people that have recovered who have gone into a relapse because of the pandemic,” she said.
The rise in cases could have fatal consequences — eating disorders have the highest mortality rate of any psychiatric disorder.
Mental health system needs ‘rebuild’
On Wednesday, the Victorian government announced a $20 million package to support Victorians with eating disorders, including 15 additional mental health beds and four multidisciplinary mental health teams in regional Victoria.
There is also funding to develop a new statewide eating disorders strategy, so Victoria has a more coordinated response to support people living with eating disorders, as well as their carers, families and supporters, in the future.
“We need to rebuild our mental health system from the ground up, but also deal with the long tail that will come out of this pandemic,” said Victorian Minister for Mental Health James Merlino.
Sarah welcomed the funding but said people like her “desperately” needed more support now.
The constant caring responsibilities have placed enormous stress on the whole family, and strained relationships.
“We’ve lived this hell for seven years, and we are going to continue living it because there is no support,” Sarah said.
Gap in ‘hospital merry-go-round’
Elise has been hospitalised with anorexia 15 times because her physical health was at critical risk from the condition.
In the hospital, Elise receives 24-hour care to reach a point where she is medically stable.
Sarah says her daughter is then discharged, and there is no support for families who try to cobble together around-the-clock care.
“There is a massive gap between hospitalization and when you can access day services,” Sarah said.
“You’ve got to be a certain BMI [body mass index] to get the outpatient services because they know the brain doesn’t function when you are malnourished.”
Co-founder of Eating Disorder Families Australia (EDFA) Christine Naismith said many people experienced the “merry-go-round” of going to emergency departments, and then being discharged without the necessary care or plan going forward.
Christine’s daughter Alana was diagnosed with anorexia in 2012, and has now recovered from the condition.
Alana remembers being released from hospital as the “most awful time for a family”.
“I was the focus, Mum had to sleep in my bedroom for months and watch me shower,” Miss Naismith said.
“There isn’t as much support for the other siblings.”
That time has had a lasting impact on the entire Naismith family.
Alana’s sister is currently getting treatment for Avoidant Restrictive Food Intake Disorder.
Ms Naismith’s son experienced depression.
Why a national approach is needed
While welcoming the Victorian government’s investment, Ms Naismith said Australia needed a national approach to eating disorders so there was consistent care across the country.
“In major cities, treatment for eating disorders is severely lacking, and it is all but non-existent in many regional areas.”
In each state and territory, different organizations are trying to solve the same problems.
Ms Naismith said a national approach would allow Australia to treat eating disorders more efficiently – meaning less money spent on planning and more on care for patients.
A spokesperson for the federal Health Minister Greg Hunt said the government had committed more than $250 million towards eating disorder services, national coordination and research.
“The Morrison government provided $110.7 million for the first-ever specific Medicare items for eating disorders, enabling people with an eating disorder to receive up to 40 psychology and 20 dietetic Medicare-subsidized treatment sessions per year,” the spokesperson said.
“The Morrison government is also funding the National Eating Disorders Collaboration (NEDC) to lead the development and implementation of a nationally consistent, evidence-based system of care for the prevention and treatment of eating disorders.”
The ABC approached the opposition for comment but they did not respond before the deadline.