After being told she had just one week to live, Auckland-born Millie Thomas travelled to the Sunshine Coast to die “in her happy place”. Her life had been consumed by anorexia when her GP gave her the ultimatum of another recovery effort or death.

She said her body was “literally breaking down” and after her previous treatment team had lost hope in her recovery, she decided she would rather die. Today Miss Thomas is fully recovered, living on the Sunshine Coast, and works as an eating disorder recovery coach offering her guidance and lived-experience to sufferers.

MP for Fisher Andrew Wallace, whose family has “been touched by eating disorders for many years”, said every day 240 Australians will attempt to take their lives and eight of them will be successful. He said there were approximately 3.2 million people who either have an eating disorder or know someone who was suffering.

Although eating disorders are not a topic of recently published research, a 2008 study found that they are becoming increasingly prevalent, with approximately one in 20 Australians suffering. However, the Butterfly Foundation said that just 25 per cent of Australians with an eating disorder were known to the health system, identifying both the health system and society’s lack of education, stereotyping and associated stigma around the illness as limitations.

Mark and Gayle Forbes are one of the thousands of Australian families affected. The Buddina parents found themselves without hope during a 20 year battle with “a system that did not work”, when both of their daughters were undergoing treatment for bulimia.

Mr Forbes said it was incredibly common for an eating disorder to be in your home unnoticed for a long time like it was for his family. “It slowly creeps in…it was under our roof for three years and we didn’t know,” Mr Forbes said. It was not until a combination of continued weight loss, mood swings and finally evidence of binge-eating and vomiting that the couple realised their first daughter was ill.

Like Miss Thomas, ongoing recovery facilities failed the Forbes’ daughters. The couple started chatting with like-minded parents who they found shared the burden of having “exhausted all avenues”.

Mr and Mrs Forbes then took matters into their own hands by founding the charity EndED. Mr Wallace has worked closely with EndED after his daughter suffered anorexia. “When you hear about and experience the grief and pain as a family it is hard to not be passionate about raising awareness,” Mr Wallace said.

What started as fortnightly meetings at the Forbes’ house for parents and carers to share their journey concluded that Australia was behind the rest of the world for treatment options.

They looked at the success of America and the United Kingdom who offer live-in residential facilities and thought they would “do something about it and build the first one”. In less than six weeks EndED, in collaboration with the Butterfly Foundation, will pioneer Australia’s first holistic approach to treating eating disorders with construction of the EndED Butterfly House beginning at the Forbes’ property in Mooloolah Valley.

The Butterfly House will be “a big Queenslander”, Mr Forbes said, and will lack any resemblance to a hospital.  The secluded hills will home up to 12 patients at a time providing therapy far beyond medical treatment. Hypnotherapy, dance, yoga and art are some of the well-being focused activities on offer. Sufferers can also relax from treatment by visiting the vegetable garden, pond or ever-growing animal family of horses, chickens and two miniature pigs named Hope and Bob.

Mr Wallace said he considers himself very fortunate that he is now in the position as Federal Member to help effect this change. Last month he was joined by Mr Forbes in parliament during the Federal Budget, where he announced the Government will be providing a guaranteed $4.5 million to the construction of the facility in addition to the $1.5 million he announced last year.

“To actually watch a loved one slowly die before your very eyes you can’t just stand back and watch that happen to other families,” Mr Wallace said.

The Butterfly House is part of the Government’s $70.2 million plan to establish a further six residential eating disorder facilities across Australia.  Mr Wallace said the funding can be contributed to the LNP’s economic leadership which has allowed them to allocate their financial surplus to mental health. This is a surplus that Mr Wallace said the Labor party did not see “in their entire six years of Rudd, Gillard leadership”, and have not seen since 1989.

The funding that Mr Wallace has committed to this plan is guaranteed, as long as the Labor Government do not “do an about face” if they come in to power in the election on May 18. He said if there was a change in leadership, the future of mental health in Australia was uncertain as Labor Party leader Bill Shorten has failed to commit any funding to the Sunshine Coast.

“Not one red cent have they come out with, and nor have they indicated whether they will continue to fund the projects that we’ve already started,” Mr Wallace said. The Labor Party’s Bill Shorten and Anastacia Palaszcsuk toured the Sunshine Coast earlier this year. Mr Forbes said he sent Mr Shorten an official invitation through Mr Wallace asking him to visit the EndED House.

“It’s disappointing, I’ve been emailing him [Bill Shorten] every third day since January and not one response,” Mr Forbes said. Mr Wallace said his invitation to the Opposition Leader was to no avail. “Neither of them were interested in coming out to look,” Mr Wallace said. Mr Forbes is certain there will be no funding support in the future if the Labor Party wins at the upcoming election. “They said they didn’t have time in their schedule…to me that says it all,” Mr Forbes said.

A lack in funding of treatment for mental health disorders could lead to fatal outcomes. Anorexia nervosa has the highest mortality rate of all psychiatric illnesses, including a high risk of suicide, according to a meta-analysis by Arch Gen Psychiatry.

“The damage and the absolute carnage that this causes to families, friends and workplaces… we’re failing them as a society,” Mr Wallace said.

He said people who suffer from eating disorders are “often very mentally unwell… what to us might seem normal is incredibly hard for them”. “I know from my own experience I used to think just open your mouth put some food in there, chew and then swallow, this is not rocket science,” he said. “Eating disorders are still unfortunately something as a society we don’t like to talk about – it’s very misunderstood.”

Mr Forbes likened today’s misunderstanding of eating disorders to that of depression in the past. “Depression years ago was a very taboo subject, but because of all the work by Beyond Blue, people are a lot more open to discuss their issues,” he said. “That’s where we want to get eating disorders to.”

The lack of knowledge surrounding eating disorders was clear in Parliament when Senator Deborah O’Neill and Department of Health Deputy Secretary Caroline Edwards debated what would deem an eating disorder as serious. Senator O’Neill said all eating disorders have individual and complex needs and every situation should be considered serious.

Miss Thomas said our culture has been engrained by the stereotypical idea of what an eating disorder should look like. “The media shows images of people stepping on to scales with bones sticking out which then makes people think if they’re not that skinny then they’re not worthy of treatment and they don’t have an eating disorder,” she said.

This traditional portrayal is a false representation of the reality faced by most sufferers.“75 per cent of my clients, if you saw them walking down the street you would not think they had an eating disorder…they have raging eating disorders, yet they look normal,” Miss Thomas said.

Although female adolescents are the most susceptible and have the highest rate of eating disorders, the National Eating Disorders Collaboration concluded that anyone was at risk. In Australia males account for a quarter of anorexia sufferers and half the population with binge-eating disorders.

Miss Thomas said it’s vital to remember that eating disorders do not discriminate. She said promoting a variety of treatment options and employing qualified, lived-experience professionals like herself, as a qualified recovery coach, were essential in out-smarting and breaking down eating disorders.

It is the support, guidance and communication-driven connection offered by EndED that Miss Thomas said would create a positive social movement. EndED aspires to defeat the stigma associated with eating disorders and ultimately empower sufferers to have hope in recovery. “For my patients I am living, breathing proof that full recovery is possible,” she said. “And there is life after recovery.”

If you or someone you know is suffering from an eating disorder call the Butterfly Foundation National Helpline on 1800 33 4673 or click here to get in contact with the team at EndEd.