Australia’s first national research and translation strategy for a mental health disorder
Online launch 10:15 am AEST, Tuesday 21 September 2021: media welcome, https://www.streamgate.co/insideout-institute/
At least a million Australians affected by eating disorders, but only about 200,000 receive evidence-based treatment
- Leading psychiatric cause of death
- Anorexia Nervosa, Binge Eating Disorder, Bulimia Nervosa and other eating disorders are having a profound impact on individuals, families and communities
- National research strategy launched today says we can improve early identification and treatments and even prevent eating disorders
- The strategy outlines the ten questions that need answers for us to improve the quality of life for all affected Australians and their families.
Speaking at the launch: Jana Pittman, Sarah Maguire, Minister for Mental Health David Coleman, and people who have experienced eating disorders
- Resources for the media
- Safe reporting guidelines and further support
- Media release below
- Minister’s media release (pdf)
At least a million Australians right now are living with an eating disorder. But there may be many more, because the early signs often aren’t recognised, there is significant stigma and stereotyping associated with eating disorders, and there is insufficient research into the best ways to prevent, detect and treat these disabling and sometimes deadly mental health disorders.
That’s why patient advocates, people with eating disorders, clinicians and researchers came together to develop the National Eating Disorder Research Strategy. “We worked with over 480 people around Australia to develop the strategy and to define the Top 10 most urgent research priorities, that can make a real difference over the next decade,” says Dr Sarah Maguire, Director of the InsideOut Institute at the University of Sydney.
“We know that early intervention can prevent severe illness, we know that many people can fully recover if they get the right therapy at the right time,” says Dr Maguire. “But unless we discover the right treatments through research and translate them into the right therapies received at the right time, people don’t and won’t recover.”
The Top Ten Priority areas for research include; stigma and health promotion, risk and protective factors, prevention, early identification, equity of access, do no harm, early intervention, support families, individuals medicine and treatment outcomes.
“Eating disorders are poorly understood by the general public and medical professionals”, says Dr Maguire. “70 per cent of people with an eating disorder don’t get treatment, and of those who do, only 20 percent receive an evidence-based treatment.”
“We need to work with clinicians so they can intervene effectively, using the best research,” says Dr Sian McLean, President of the Australian & New Zealand Academy for Eating Disorders and one of the researchers who contributed to the development of the Strategy. “And we all need to be aware of the early warning signs of eating disorders, especially in people who might not fit public stereotypes.”
“Eating disorder research has been historically very poorly funded. Government investment in this strategy marks a significant turning point,” she says.
Eating disorders can be associated with significant body changes, for example weight loss in anorexia nervosa, but most people who live with eating disorders don’t experience this, and so their struggle can be hidden, go unnoticed or even be dismissed by clinicians.
One of the many contributors to the strategy was Shannon Calvert, who has used her experience of living with Severe and Enduring Anorexia Nervosa (SEAN) to embed the ‘lived experience’ in research and treatment for eating disorders and mental health.
“The best treatment for eating disorders is person-centred and compassionate, and that’s also true of research,” says Shannon. “We have to integrate research and clinical practice so that our experience can educate scientists and health professionals, and inform the questions that they pursue.”
“Australia has internationally recognised strengths in eating disorders research,” said Mr David Coleman, Assistant Minister to the Prime Minister for Mental Health and Suicide Prevention, in his foreword to the strategy. “Translation of that evidence into practice is essential to improve outcomes for people experiencing this serious group of illnesses.”
The Australian Eating Disorders Research & Translation Strategy was developed by eating disorder researchers, clinicians and people with lived experience through a collaborative and iterative process. This co-designed methodology also involved over 480 individuals and the national and state peak advocacy bodies. Development of the Strategy was led by InsideOut Institute with support from the Australian Government.
Resources for the media
Currently in Dropbox at https://bit.ly/39lsiyZ
- The Australian Eating Disorders Research & Translation Strategy (four page version, 32 page version, full version
- Top 10 Areas for Eating Disorder Research to Investigate
- Eating Disorders Statistics
- Graphics and photos
People for interview
Dr Sarah Maguire: InsideOut Institute Director, clinical psychologist, researcher, educator, and policy maker with 20 years’ experience in the field of eating disorders. (https://insideoutinstitute.org.au/team/dr-sarah-maguire)
Shannon Calvert: WA, panellist at the launch. Shannon is a lived experience leader, having experienced Severe and Enduring Anorexia Nervosa (SEAN) for most of her life. Her expertise lies in collaborating alongside clinicians, researchers, and organisations that champion wellbeing through education, training, and supervision. (https://bodymatters.com.au/shannon-calvert/)
Chelsea Marchetti, South Australia. Chelsea’s eating disorder began when she was just 9 years old – she felt her body was bigger than others. As a dancer, in her teenage years, her coaches unknowingly fuelled her illness by encouraging her to restrict her diet and over-exercise. No-one questioned her disordered eating because she wasn’t ‘super skinny’ – her body didn’t fit the stereotype of an eating disorder.
Saria Green: Paramatta, NSW. Sarah has lived experience of eating disorders. She is now a clinical psychologist, specialising in minority stress, particularly in LGBTQ+ and BIPOC communities.
Liam Manning, rural NSW. Liam grew up in Dubbo and is currently living and studying in Newcastle. He had a six-year battle with anorexia nervosa during his teenage years and is now recovered. Liam is a strong advocate for increasing awareness about boys and men with eating disorders and increasing access to treatment.
Bronny Carroll: NSW/ACT. Bronny is the primary carer for her daughter, who has struggled with severe anorexia nervosa for over 20 years. She is also a consultant carer for InsideOut, participating in workshops and research, plus other advocacy roles.
Belinda Chelius: QLD. Belinda is a patient advocate and Executive Officer of Eating Disorders Queensland.
Summary of the Top 10 Eating Disorder Research and Translation Priorities for Australia (as told by people with lived experience)
Are there particular strategies parents/families can use that help prevent the development of an eating disorder?
How can GPs & other health professionals better identify disordered eating and the symptoms of all stages of all types of eating disorder, and intervene appropriately as part of routine practice?
Equity of Access
How do we ensure all Australians have equitable access to effective eating disorder treatments no matter where they live or what they can afford?
What existing eating disorder services, treatments, or treatment factors have the best long-term outcomes?
How can treatments be more individualized to consider diverse needs, stage of life, illness duration, type and diagnosis?
What support and skills do families need to help their loved one at all ages and stages of treatment across the recovery journey?
What are the barriers to early intervention and how can these be addressed?
Do No Harm
What are the positive and negative impacts of current treatment – how can we reduce the negative impact and increase the positive?
Stigma & Health Promotion
How can public health messaging around healthy eating and weight be delivered without impacting on the development of eating disorders and inducing weight stigma?
Risk & Protective Factors
What are the key risk and protective factors and how do they impact on the development of (or the risk of developing) an eating disorder?
About InsideOut – insideoutinstitute.org.au
The InsideOut Institute for Eating Disorders is Australia’s national eating disorder research institute – a collaboration between the Sydney Local Health District and the University of Sydney’s Faculty of Medicine and Health, based at the University’s Charles Perkins Centre. InsideOut is working to prevent eating disorders, improve treatments and find a cure through innovative research, underpinned by collaborative-co-design principles.
Guidelines for safe reporting of eating disorders
We encourage reporting about lived experience of an eating disorder, but please be mindful in how it is portrayed. Be careful not to:
- Mention specific weights, measurements, weight loss, quantities.
- Detail specific behaviours
- Post images of people with extreme body weights or before/after pictures
- Glamourise eating disorders
Use the terms sufferer, patient, anorexic or bulimic to describe someone with an eating disorder, instead use “person with an eating disorder”.
More information about reporting and portrayal of eating disorders here: https://insideoutinstitute.org.au/assets/nedc-mindframe-reporting-guidelines.pdf
If you are experiencing distress and need support, you can contact:
- The Butterfly National Helpline 1800 ED HOPE (1800 33 4673)
- Lifeline: 13 11 14
- Beyond Blue:1300 22 46 36.
- Suicide Callback Service: 1300 659 467
- MensLine Australia: 1300 789 978
- Kids Helpline: 1800 551 800
- Headspace: 1800 650 890
- ReachOut: au.reachout.com