Late last year, 12-year-old Haven was admitted to hospital in Canberra for the second time, suffering from a form of anorexia.
Haven's mother Vanessa said the experience was any parent's worst nightmare.
"You so desperately want your child to come through this and you don't know if [they are] going to," she said.
"You don't know if they're going to live to see 13 or 14.
"You don't know if readmission is just going to be part of their life."
Vanessa explained that Haven, who is non-binary, began cutting their meals in half during COVID-19 lockdowns, and from there, their condition quickly declined, which led to a diagnosis of anorexia nervosa.
"They just didn't cope and all of a sudden they're losing a kilo a week within a matter of weeks," she said.
But Vanessa said while seeing her child suffer was traumatic, her stress was compounded by the treatment Haven received at the high care paediatrics ward at the Centenary Hospital for Women and Children.
Vanessa said that during Haven's three-month hospital stay, they received inconsistent mental health treatment and were seen by several different psychiatrists.
Vanessa said this was particularly problematic because Haven is also neurodivergent.
"We haven't had any consistency with the psych team and if anyone knows anything about autism and children on the spectrum, they need consistency, they need structure, they need things put in place," she said.
"To get a one-on-one consultation is like pulling teeth."
Vanessa said Haven's experience painted the picture of a hospital system that was not adequately set up to deal with young people with eating disorders, due to a lack of mental health support.
So, Vanessa said she and Haven's father had made the drastic decision to move their child interstate, to ensure Haven received the treatment the family said they needed.
Vanessa said Haven's father quit his job in order to make the move to Melbourne with Haven, where she says they are now in a hospital far better equipped to deal with the eating disorder.
Haven's mother said since relocating, the family had experienced improved communication and consistency with the treating team in Victoria.
But Vanessa said the decision had come at a huge financial and emotional cost.
She said she has had to stay in Canberra, working two jobs and caring for Haven's sister.
"I just can't drop everything. I need to survive and pay rent," she said.
"I can't just relocate. I don't have the finances for that.
"But I don't want to be apart from them. I want them to stay here, I want them to get well here. I want consistency here.
"I feel sad, numb, scared. I'm also missing them a lot."
'Very much about treating the physical side'
Rosemary Clifford is a project officer at Mental Illness Education ACT (MIEACT), a service focused on decreasing the stigma around mental health and increasing health-seeking behaviours.
Ms Clifford said she experienced anorexia nervosa as a young person and remembers wanting to be the thinnest she could be — "the lowest number on the scale".
She describes her time receiving treatment in Canberra about six years ago, as being "filled with discomfort", due to what she said was a lack of mental health care.
"My whole stint in hospital was very much about treating the physical side," she said.
"I never got seen by a psychologist, psychiatrist, mental health professional at all, despite the fact that the mental symptoms were actually directly related to my eating disorder."
Ms Clifford said, in her experience, it was common for people with eating disorders to be met with the attitude of "come in, fix the physical stuff and throw you back out".
Now working in the mental health space, she said if that attitude was changing, it was not changing fast enough.
Ms Clifford said, in Canberra, there was still a significant gap between the physical health and the mental health spaces working together.
Initial priority is medical stability, hospital says
Jen, who is 21 years old, has spent almost a decade in and out of the ACT health system.
She said she began experiencing non-diagnosed anorexia at 12 years old and only got a diagnosis of atypical anorexia last year after she sought treatment at a private clinic in Sydney.
Jen said she did not believe the treatment she received in Canberra for her eating disorder was sufficient and felt that her mental health was often forgotten about.
"I was literally meant to see [a] mental health [worker] every day and saw them once or twice when I was in [hospital]," she said.
"I didn't get a lot of mental health support. I was kind of left to my own mental health coping mechanisms.
"I think that was the big thing I struggled with — getting people to understand I'm not choosing what I'm doing, my head is choosing what I'm doing."
In a statement, Canberra Health Services said, while it prioritised "both the physical and mental health treatment" of a child or young person in their recovery journey, the patient "firstly needed to be physically well enough before they could undertake effective mental health therapy and treatment".
"The purpose of a hospital admission of a young person with an eating disorder is to achieve medical stability as they are in a metabolically unstable condition," the statement said.
"The focus on the ward is to provide medical stability and reduce risks."
It states more "formal therapies" begin when the patient has gained sufficient weight.
"Their poor nutrition means that they have a limited capacity to engage in psychological therapies, which is addressed by re-feeding," Canberra Health Services said.
"Once a young person is medically stable, individual therapeutic interventions are discussed with the young person and their carers."
The ACT government said support was also available for families through the Eating Disorders Clinical Hub's Transitional Clinician — an outpatient therapy service.
But Ms Clifford said more support for families needed to be provided, both during and after a young person's treatment for an eating disorder.
She said the mental health space often forgot about the families involved, particularly in the ACT where parents had to take on a far more active role in treating their children "because there isn't that inpatient care".
New eating disorder centre location approved
The ACT government has previously acknowledged the limited availability of services to treat eating disorders in the territory, and says it wants to improve accessibility with a new Residential Eating Disorder Facility in Coombs in the city's south.
The Commonwealth government agreed to fund $13.5 million over three years for the development of the centre, with construction set to be completed by the end of this year.
But Haven's mother, Vanessa, said it was not good enough that families were waiting for the centre to be built to access more support.
"You don't need a fancy building — I don't know why there's such a wait, things should be implemented now," she said.
"It's really frustrating as a mother to see that you know what needs to be done and it's not being done, and you don't have billions of dollars to get it done.
"If I had the money, I would do it."
Ms Clifford said the wait for the centre could cost lives, and left behind those fighting the illness now.
"It's great it's happening, but it's not going to be around for those parents who are going through the thick of it now and I think that's the problem — what can we do in the interim to provide more support?
"We shifted our whole medical system around COVID, we know we can do this.
"We're not dealing with people who are just going to be uncomfortable for several months, we're talking about some of these young people who won't actually make it — the rate they're going — to the opening of this centre."
