Influential voices of lived experience WIN for eating disorders

June 18, 2018

On Wednesday 15th June, Federal Minister for Health, Greg Hunt, stood beside Lexi Crouch and Butterfly Foundation CEO, Christine Morgan, at a Ministerial media conference on Queensland’s Sunshine Coast. Lexi’s brave personal account at the event provided the necessary lived experience focus of the Minister’s announcement and ensured that the audience was given a clear appreciation of the significance of Australia’s first trial of multi-disciplinary treatment in the community for eating disorders.

“This really does instil hope for the future of eating disorders treatment and the lives of so many Australians. It will take away an element of stress that is so real and prevalent for many accessing care.”

Lexi Crouch, 30, Brisbane

For the past 15 years Lexi has battled an eating disorder, including numerous life-saving emergency hospital admissions, in between attempting to access adequate treatment. Through sheer will-power and no shortage of heartache, Lexi has won her battle and is dedicated to sharing her experience with others.

Lexi’s story underscored the serious reality of what its like to live with an eating disorder.

Lexi provided the final chapter for Butterfly Foundation’s MAYDAYs campaign. She joined a group of Australians with diverse lived experience of an eating disorder, as they gave voice to the realities of the financial and life costs of battling an eating disorder in Australia’s current health system. Their bravery and willingness to tell their story to media and directly to the Government has illuminated the significant challenges needing to be addressed and underscored the Government’s recognition of the need for the Trial.

The Trial was a direct response to the need to have real world testing of the in-community treatment model being proposed by Butterfly Foundation, which is based on extensive consultation with Australia’s best clinical experts and Australians with a lived experience of eating disorders.

The key to inspiring change was to ensure that all communication and advocacy for this project had a heart and head strategy.

The heart of this matter was delivered in inspiring fashion by carefully supported storytelling from courageous Australians with a lived experience. Their daily realities inspired and informed the tone and attitude of all communication. Their stories and their real-world experience of the health system gave voice to the voiceless and created a community of shared lived experiences.

The head was in the form of Butterfly Foundation’s focus on its overall strategy, one of over-all health system reform for eating disorders based on up-to-date clinical and lived experience research, collaboration across the sector, and a carefully supported program of collaboration and consultation.

The treatment trial begins late in 2018 and it is hoped that with its success a national rollout of similar treatment and support in the community will be supported by the Federal Government over the coming years. The Trial is one step in the many changes needed across Australia’s health system to achieve the levels of treatment and support required.