'You feel so numb': Australia-first program offers hope for people like Siena

Siena Armati at a home in Double Bay. Story details: Siena will be speaking about her experiences getting treatment for an eating disorder. The story is about eating disorder services and the need for more intensive programs. Tuesday 12th September 2017 SMH photo Louie Douvis .
Siena Armati at a home in Double Bay. Story details: Siena will be speaking about her experiences getting treatment for an eating disorder. The story is about eating disorder services and the need for more intensive programs. Tuesday 12th September 2017 SMH photo Louie Douvis .

For three years Siena Armati's life was a revolving door of emergency departments, feeding tubes, starvation and lying to the people she most cared about.

Anorexia nervosa's deleterious effects isolated the teenager, corroded her body and wore away at her self worth and mental well-being.

She was admitted to hospital four times between the ages of 15 to 18, dangerously underweight and her heart barely beating.

"My body had begun to shut down and I was close to death," said Siena, now 20.

During each admission she was fed through a tube and confined to a bed or wheelchair. And each time she regained enough weight to be discharged it never lasted.

Physically she was getting stronger, but the mental effects of the illness were prescient.

In 2015 Siena had had enough. She decided to go to Monte Nido, an eating disorder clinic in California.

"I was sick of the life I was living, going in and out of hospital, exercising eight hours a day.

"It gets to a point where you feel so numb you can't explain what you're doing and why you can't stop doing it," she said.

The clinic pioneered an evidence-based treatment model developed by Carolyn Costin, which focuses on the underlying causes of an eating disorder and the individual's relationship with food.

Australian families can spend between $50,000 to $100,000 a month to send loved ones to the US clinic.

Siena's family spent about $250,000 for her 7??-month admission.

At first she hated the program, the way it pushed her boundaries and challenged her most insidious eating-disordered thoughts and impulses.

But she persisted, and the intensive program helped her regain the autonomy she'd lost to the disorder.

"I regained my will to live, my humour, and the 'real' me had returned.

"I'm back in the world, I'm part of my family again, I'm living and I just want to be happy," she said.

On Monday, the Butterfly Foundation launched an Australian-first Youth Intensive Outpatient Program in Sydney based on the Carolyn Costin model, costing families $120 per patient per week over the 10-week program.

"The Butterfly Foundation is committed to trying to ensure there is no divide between those who can afford it and those who can't," chief executive Christine Morgan said.

"We thought, surely we don't need to send our young people overseas for this kind of treatment."

With philanthropic funding from the Future Generation Global Investment Company, the program offers treatment for 14-24-year-olds who have emerging anorexia, bulimia, binge eating disorder or atypical eating disorders.

"We know that the longer they are undoing and untreated the more entrenched they become," Ms Morgan said

"We are trying to stop these illnesses being hard-wired in the brain."

An estimated 4 per cent of Australians have an eating disorder in their lifetime, yet fewer than one in four get treatment, according to a 2012 report. Little has changed in recent years, Ms Morgan said.

The group-based model enrols roughly eight patients who attend two three-hour sessions per week.

The sessions run by specialised psychologists incorporates CBT-E, an eating disorder-specific form of cognitive behavioural therapy.

The outpatient program allows patients to go about their daily lives, live at home and go to school, university or work while they are on the program.

There is a heavy emphasis on family involvement, with family members encouraged to attend fortnightly sessions and join the treatment team and patients for meals.

The supportive meal therapy framework help to remove fears around eating and reintroduce the nurturing and social benefits of sharing meals.

Families can learn from and support each other through the process, and gain greater insight into what their loved one is grappling with, Ms Morgan said.

The Australian program, which mimics the foundation's adult intensive outpatient program, is not government-subsidised or covered by private health insurance.

Gaps in eating disorder services in NSW

Eating disorder treatment services have been chronically underfunded for decades, Ms Morgan said.

There are currently three public day programs offered statewide for eating disorder patients: on the Central Coast, the Hunter region and the Royal Prince Alfred Hospital in Camperdown.

The Sydney Children's Hospitals Network is trialling a child and adolescent day program for patients aged 10-18 and their families.

NSW currently has 12 hospital beds dedicated to adult eating disorder patients, and 16 beds for children and adolescents needing specialised treatment. There is some capacity to cater to more patients, a spokesperson for NSW Health said.

Ms Morgan applauded the NSW government rolling out a statewide eating disorder service plan aimed at making the condition a core focus at all local health districts.

In the meantime, philanthropic funding was "critical" for the youth program and other eating disorder services, she said.

In 2016 Future Generation Global donated more than $290,000 to the Butterfly Foundation and will donate a further $333,000 in October for the program.

FGG director Geoff Wilson said the stigma surrounding eating disorders and other mental illnesses meant it was often difficult for these services to attract the funding they needed.

But the logic supporting the program was undeniable.

"It is a phenomenal opportunity to bring to Australia a proven program that has been successful in the US. You can see the tangible benefits in a very short time," Mr Wilson said.

"From my perspective if FGG save one life then it's all been worth it," he said.

This story 'You feel so numb': Australia-first program offers hope for people like Siena first appeared on The Sydney Morning Herald.