Mother of child with eating disorder calls for hospital system reform after 25 admissions in past year

Vanessa with daughter, Haven, before Haven became ill. (Supplied)

When Vanessa’s child, Haven, began cutting their food portions in half, she never thought it would turn into a long-term, life-threatening eating disorder.

Haven, who uses they and them pronouns, began experiencing anorexia-like symptoms at 11 and soon after was diagnosed with avoidant/restrictive food intake disorder (ARFID).

“I didn’t think we’d be in this position at all. I thought very much like, ‘This is a phase’ … we never expected this,” Vanessa said.

People with ARFID often have other mental health problems including depression, anxiety or obsessive-compulsive disorder, and avoid certain foods out of fear they are contaminated and will harm them.

In just over a year, Haven has been admitted to Monash Children’s Hospital with tachycardia and dangerously low levels of blood sugar about 25 times.

They remain in hospital for one to three weeks, where they are fed nutrients through a nasal gastric tube, and medically stabilised.

At home, Haven avoids food or liquids, which causes their blood sugar to plummet and repeats the cycle of readmission and discharge.

“We’ve watched their mental state deteriorate to the point where now they have this belief system that almost comes across schizophrenic, completely deluded,” Vanessa said.

“I feel like every time Haven gets discharged from hospital more of [their] brain function disappears to the point where they’ve just become this paranoid person with deluded thoughts about food and germs.

“This is not my daughter. This is not who she is at all.”

Mother pleads for better care

Vanessa has requested long-term care from the hospital, and more mental health support, but said the Victorian hospital system is broken in terms of dealing with eating disorders.

“I feel like for a medical stability standpoint, Monash were able to do that, but they are unable to support Haven mentally at all and get to the root cause on a long-term basis,” she said.

“They don’t have the resources; they don’t have the funding.”

Eating disorders affect about 1.1 million Australians over the age of five, including about 286,000 Victorians in 2023.

Eating disorders in adolescents have nearly doubled since 2012, making up 27 per cent of cases.

A Monash Health spokesperson said the Monash Children’s Hospital continues to see a high number of admissions seeking urgent and acute care related to complex eating disorders in general and mental health wards.

“To best care for people with eating disorders, it is critical that they have access to specialist mental health eating disorder units which integrate mental health and physical health care,” the spokesperson said.

“We continue to work with government to deliver this much-needed model of care.”

Haven’s case raised in state parliament

Victorian Shadow Minister for Health Georgie Crozier raised Haven’s case in state parliament in February, advocating for more attention to be given to eating disorders in Victoria’s hospital system.

Ms Crozier said the Minister for Mental Health, Ingrid Stitt, and Minister for Health, Mary-Anne Thomas, should better support children with eating disorders and their families.

“That’s her role as minister for health, she needs to step in and ensure that these kids are getting the appropriate care and their families are getting the proper support,” Ms Crozier said.

“And if there needs to be more investment in that, then that’s what government needs to do.”

Ms Crozier said there was not enough capacity in Victoria’s hospital system to meet demand.

“What I’m concerned about is a really horror budget coming up,” she said.

“The treasurer has said that there is so much pressure on the health system, health services are inevitably going to be impacted with the cuts that are coming and the closure of services.”

In her response, Ms Stitt stated she was aware of Haven’s case and that the “appropriate steps have been taken by the Department of Health”.

Ms Stitt also said the state government’s 2023-24 state budget provided a further 12-month funding uplift for Eating Disorders Victoria and ongoing operational funding for Victoria’s first purpose-built statewide residential eating disorders treatment centre.

The centre aims to provide 24/7 support to people aged 18 years and older, with some consideration given to young people between 16-17 years old.

A Victorian government spokesperson said a range of new initiatives were being delivered to support Victorians living with an eating disorder, with the last budget delivering $16 million to increase access to eating disorder services in the state.

“This includes expanding our Eating Disorder Enhanced Specialist Model to increase the capacity of our hospitals to provide integrated treatment and care, and building Victoria’s first purpose-built residential treatment centre to provide round-the-clock support for those who need it,” the spokesperson said.

Calls for reform

Eating Disorders Victoria CEO Belinda Caldwell said that while hospitals should not discharge patients before they are able to eat orally, long admissions can be counter-productive.

“Often being in hospital for extended periods can just really entrench the eating disorder and the behaviours,” she said.

“You don’t want to keep them in there for weeks or months … that takes people away from their families, away from social life, away from other things for extended periods.

“And so it’s that balance, we need the young person to be eating, but it’s not fair to send someone home from hospital who was on a nasal gastric tube the day before.”

Ms Caldwell said the Victorian government’s eating disorder strategy needed to be released, with a commitment to investment in early intervention and outpatient support services.

“We need to pick up on eating disorders way earlier, we want to see investment into much more robust supports for people when they’re trying to recover, whether that’s peer support or treatment support,” she said.

“The strategy is the key because we need a road map that [all states] can follow.

“We need deep systemic planning around eating disorders and investment to go along with that to make it happen.”