Severe and Enduring Eating Disorders – A Lived Experience Co-design Program

About this event

Severe and enduring eating disorders (SE-ED) are most commonly defined by the duration of the disorder (usually 10 years+) and the number of attempts at treatment that have thus far been unsuccessful. While the limited amount of research into SE-ED focuses on Anorexia Nervosa, a SE-ED can occur in any eating disorder diagnosis.

Often people with SE-ED feel like they don’t ‘fit’ anywhere within the health system. Evidence demonstrates that, after the 10-year mark, SE-ED can become more challenging to treat, when treatment is weight and/or recovery-focused. Individuals with SE-ED can develop more rigidity in attitudes due to repeated treatment failures; stigma and labels from medical professionals that they are 'treatment resistant'; or a loss of faith in the medical system. This can result in the cycle of reinforcement that “I’m too sick to get better”; or “No treatment will work for me”.

Rather than focus on weight or recovery-focused treatment, which demonstrate low engagement for those with SE-ED, EDV’s Pilot Program incorporates a more holistic approach - taking into consideration well-being, social functioning, connection and belonging, and quality of life.

For clinicians and health professionals, this presentation will explore:

• The need for specific programs to address the treatment gap for those with SE-ED
• EDV’s SE-ED Program development and design, and the significance of lived experience in the co-design
• The structure of the SE-ED Program
• The measurements used to evaluate participant improvements
• The preliminary findings, themes and introductory case studies