Hearing from lived experience on improving eating disorder treatment, support, and awareness in the next 10 years

With the eating disorder sector hopeful for the future with the launch of the National Eating Disorders Strategy 2023-2033, we asked people with lived experience what actions can improve eating disorder treatment, support, and awareness in the next 10 years.

This Body Image and Eating Disorders Awareness Week, Butterfly is raising awareness and encouraging people to take action, big or small, to support the 1 million Australians living with an eating disorder and those impacted by body image concerns. Hearing from lived experience is key, so we asked our Lived Experience Network, the Butterfly Collective, what they would like to see change in the next decade.

More education for healthcare professionals

• “Being a part of the ED treating system for over 6 years it’s safe to say that professionals have limited understanding of the mental illness. In years 2021 and 2022 the community has grown and facilities have improved however this is not enough. Nearly all of the public hospitals I’ve been to around Australia have had no understanding or empathy around eating disorders or how to treat the illness. For the system to improve in the next 10 years I would love to see all public hospitals having a Eating Disorder ward instead of placing us in general with limited care. Australia needs to open more residential facilities such as Wandi Nerrida in each state, to reduce wait lists for Wandi and provide treatment from lived experience, and set us up with a foundation when we discharge and allow long stays to nourish our brains to grow within recovery.” –Imogen, she/her, 17, NSW
• “Our family’s journey over the years repeatedly found that it was so hard for medical professionals to have an understanding of my brothers illness (eg. his GP) and what a battle it was with everyone, including professionals who were aged over 70.  Simply, they are not armed with the information and therefore, what hope do parents/carers have to manage their mentally ill loved one? Eating disorder treatment should be recognised with the same attitude as if someone had a physical disability – this is in addition to the substantial increase in Federal Funding Anorexia Nervosa should be receiving. Sam, he/him, 47, VIC
• “I would like to see appropriate mandatory training for clinicians, especially GP’s, psychiatrists, and psychologists on eating disorders in general. Currently there is huge gap in educating our doctors and other health professionals to appropriately identify, diagnose and refer to appropriate treatment for eating disorders or disordered eating. Ultimately I would like to see a mandatory screening tool for eating disorders as part of annual health checks or as a regular screening tool for initial intake/assessment appointments when a doctor, psychiatrist or psychologist takes on a new patient”. Annie, she/her, 48, QLD
• “I would like to see more adequately trained GP’s and other professionals (counsellors, psychologists etc.). It is a shame that many sufferers of ED do not receive adequate assistance when they first reach out for help, and are often met with misinformed advice from the professional. It is SO difficult for a person with an eating disorder to WANT to reach out for help, and we need to ensure that when they do, they are met with supportive medical professionals who can either help them or help to refer them to an ED specialist.” Katelyn, she/her, 36, SA
• “We need more clinicians specialising in or having experience/understanding of eating disorders (this can also be achieved by introducing eating disorder care units in university courses for Medicine, dietetics, psychology etc. and promoting it as a rewarding field to work in). Amelia, she/her, 26, SA

Increased services, treatment and support that utilises a person-centred approach, informed by lived experience

• “I’d like to see more focus on peer support and lived experiences in the eating disorder recovery experience. It is getting better but I believe there is still more to go, especially making sure there are the voices of a diverse range of experiences and they are taken seriously and not as a tokenistic gesture”. – Caitlin, she/her, 30, VIC
• “We need more services – public and private – that are equitable and accessible to all, all age groups & locations serviced, no/small waitlists, more staff retained in the workforce, better trained/educated GPs and other non-specialist clinicians – especially to reduce stigma. We need a true stepped system of care in every state – including a residential treatment centre in each state, more valuing and centering of lived experience, person-centred and trauma-informed care prioritised over ‘evidence-based treatment”. Sophie, she/her, 25, WA
•  “Reduce eating disorders, with the end goal of removing stigma of what an eating disorder looks like in the general community along with the medical professionals. Eating disorders do not discriminate and those that do not ‘fit’ the look are being denied treatment or simply being told they aren’t unwell. More access to treatment and ensuring the right treatment is tailored to them, for example CBT-E does not fit everyone, including neuro diverse treatment specific modalities.” Courtney, she/her, 39, QLD
• “I think support services (and more accessible support services at that) for those who are in what I can only describe as “quasi recovery” (when a patient has made made “leaps and bounds” from the previous stage of their eating disorder, but they might still feel stuck in some restrictive mentalities) is really important. I feel as though this is the stage where eating disorders wither evolve (e.g. go from anorexia to binge eating), are maintained long term or patients are at risk of relapse. In most states, there aren’t really any or enough support groups, affordable dietitians/psychologists/psychiatrists, or clinics that are able to support people in this stage.” Amelia, she/her, 26, SA

A system that keeps up with and addresses change

• Over the next ten years there should be briefings and more education provided to professionals on the true and current nature of eating disorders, we should not be treated the same way we were in the 1970s. Eating disorders develop from a multitude of reasons, half of those being topics that are considered too ‘taboo’ to discuss or dive into. There needs to be more research into autism and eating disorders, and how trauma develops unhealthy coping mechanisms such as binging and starvation.” Matilda, she/her, 17, NSW

Better understanding in general society

• “In an ideal world, I would love for society to de-stigmatise eating disorders. This includes far more affirming and conscious language when speaking about eating disorders and body image when hearing from medical professionals and mental health services. I have had doctors and psychologists make negative and harmful comments when talking about weight gain or my recovery and it absolutely disgusts me to know that I am not the only person that has had to deal with this. Matilda, she/her, 17, NSW
• We need businesses, schools, services and professionals to undertake relevant training in eating disorders, highlighting how to identify them, gain a deeper understanding on the different types, where to reach out for appropriate support, how to increase help-seeking and to learn the appropriate terminology and language.” Chey, she/her, 29, QLD
• “I’d like there to be more advertising about recognizing eating disorders. I’d also like to see support groups be promoted and advertised more.” Naia, she/her, 25, WA

Increased funding

• “The Australian Government need to provide further funding to public health campaigns and preventative measures for eating disorders. This will help to reduce the stigma around eating disorders and promote help-seeking behaviours. This is also important to begin from an early age (primary school) so the messaging around self-worth and body acceptance is normalised and continued during adolescence. Young people are incredibly vulnerable when it comes to developing an eating disorder, and aiming to prevent this early will improve and lower eating disorder rates in Australia.” Chey, she/her, 29, QLD

Share your lived experience

Butterfly is grateful to the people with lived experience who share their insights, opinions and experiences to help guide our work. If you would to share your experience to help make a difference for other people impacted by eating disorders, join Butterfly’s lived experience network, the Butterfly Collective.

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