There is currently no standardised criteria for Severe and Enduring Eating Disorders (SE-EDs).

Whilst there is currently no set definition for severe and enduring eating disorders (SE-ED), the most common defining criteria relates to the duration of the disorder (usually 10 years+) and that attempts at treatment have thus far been unsuccessful. 

It’s important to note that, whilst the limited amount of research into SE-ED focuses on Anorexia Nervosa, a SE-ED can occur in any eating disorder diagnosis. 

Everybody’s experience of SE-ED is different, however common themes in the literature on SE-ED demonstrates:  

• Severe loss of quality of life
• Increased fear
• Decreased social cognition
• Anxiety
• Problems with work (gaining and maintaining)
• Difficulty with social adjustment and interactions
• Dysfunctional emotion processing

For too long, people with SE-EDs have felt like they don’t ‘fit’ anywhere in the health system.

At EDV, we believe that “people don’t fail treatments; treatments fail people”. 

Evidence shows that, after the 10-year mark, a SE-ED can become more challenging to treat, particularly 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 new and innovative program incorporates a more holistic approach – taking into consideration well-being, social functioning, connection and belonging, and quality of life. Literature demonstrates that with a more rounded focus on quality of life, this can have flow on effects, including reducing eating disorder and other mental health symptoms. 

The SE-ED team at EDV are made up exclusively of those who are recovered or in recovery from SE-ED.  

The SE-ED Program is currently in a pilot phase at EDV. It is funded by the State Government, and is believed to be the first of its kind in the world.

The first round of the SE-ED Program commenced in February 2022. The second round commenced in May 2022 and round three commenced in September 2022. Round four will commence in late Jan 2023. 

Participants have spoken of the benefits of having someone to talk to, feeling accepted and understood, experiencing care and companionship, and having people they could rely on and trust.

The SE-ED Program recognises the significant impact long-term eating disorders can have on quality-of-life, including people’s ability to identify, engage, and maintain participation in meaningful activities, occupations, and life roles. 

The SE-ED Program focuses on increasing quality-of-life for participants by providing education, fostering learning and independence, increasing hope and enhancing social skills.  The program is guided by recovery principles of dignity, hope, responsibility, peer support, self-directness and empowerment. 

The program will utilise four models of practice – psychosocial and educational group work; group peer mentoring; one-on-one wellbeing check-ins and social engagement. Group Facilitators, Mentors and Wellbeing Counsellors will guide participants as they learn to re-engage in meaningful roles and activities, learn and implement new skills, and navigate community health systems. 

Lived experience is a hallmark of the program. Designed through extensive community consultation and co-design, and delivered by those with lived experience, the program will actively foster and adapt to the needs of SE-ED community.

• Improved functioning and quality of life for those with a SE-ED, their carers and significant others, through increased engagement with social and emotional connection with self and others.    
• Improved self-care and increased hope for future prospects of recovery.    
• Increased connection with eating disorder services.   
• Those with SE-ED feel heard and engaged with all aspects of program design to decrease sense of alienation and helplessness.    

The SE-ED program is an intensive 12-week program, comprising of: 

• a combination of one-on-one sessions and group work sessions. 
• a fortnightly SE-ED carers and significant others group.  

This program is available to people across Victoria and is free for all participants. 

The SE-ED waitlist is currently closed due to overwhelming demand and funding uncertainty. If you have any questions about the SE-ED program please contact: se-ed@eatingdisorders.org.au

If you are on the waitlist or unable to join the SE-ED Program, you may be interested in attending EDV’s SE-ED Support Group.

The SE-ED Support Group gives people the opportunity to draw upon the support, experience and skills of others facing similar SE-ED issues. It is an open space to discuss what you are struggling with, reflect on current challenges and discuss coping tools.

How are groups run?

Groups are held online via Zoom and participants are required to register beforehand. Groups are free to attend, thanks to the support of the Victorian Government.

Who runs the groups?

All EDV facilitators have personal lived experience with an eating disorder or have been a carer. Some are working professionally or studying in fields such as counselling, peer support and psychology. You can find profiles of some of the facilitators below.

Do I need to book?

Yes, we require you to book in if you are planning on attending.

We honour your time and the time of our facilitators. If we need to cancel a group for any reason we want to give you as much notice as possible to minimise inconvenience. Support groups do not run if less than four people are booked in, and in that instance, we would contact you to advise that it is not going ahead and offer one-to-one support to you via the EDV Hub.

If you know that you are unable to make a group, please let us know. You can do this by cancelling your booking up to 24 hours before the event or by contacting the SE-ED team at se-ed@eatingdisorders.org.au.

Facilitators

Richard  works at Eating Disorders Victoria as a social worker within the Severe and Enduring Eating Disorders (SE-ED) program. Within this program Richard co-facilitates Education workshops, is a peer mentor and provides one-on-one counselling.

Melanie (Mel) is the Coordinator of Eating Disorder Victoria’s Hub service. Within this role, Mel oversees the daily operations of the Hub, manages the Hub volunteer team and provides peer support to the community. Mel is also the REACH support group facilitator.