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

Generally, a Severe and Enduring Eating Disorder (SE-ED) requires illness to have occurred over a long period of time (10+ years in the EDV SE-ED program) and attempts at treatment have thus far been unsuccessful. SE-EDs can occur in any eating disorder diagnosis.

People who experience SE-EDs have varied experiences, however common themes amongst the literature on SE-EDs shows:

• 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.

EDV identified that Victorians with SE-EDs need holistic and appropriate support that meets their unique needs. Thanks to funding from the Victorian Government, EDV has been able to develop a new trial program to support the SE-ED community. We believe it to be the first program of its kind in the world.

Research and design of the program took place over four key stages:

1. The engagement of a research professional to conduct and report on a literature review of SE-ED programs both nationally & internationally; 
2. The development and completion of a survey by 118 community members who identify with having a SE-ED; 
3. The development of a Planning Group consisting of SE-ED lived experience community members, the researcher, and staff from EDV and Centre of Excellence in Eating Disorders (CEED); and
4. The development of an Advisory  Group made up of members of the SE-ED community, professional staff from EDV and CEED and the project researcher. The Advisory Group oversaw development of program design, program role descriptions and selection criteria. 

SE-ED Program Aims

1. To meet the unique social and emotional needs of the SE-ED client group, through the development of a co-designed, bespoke “suite of services” program.
2. Through research, development and delivery of the program, produce evaluation that indicates the effectiveness of the SE-ED program in meeting our client’s needs.

SE-ED Program Goals

• 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.   

SE-ED Program Structure

The program utilizes a Peer Mentor model, whereby those with lived experience of SE-EDs support participants.

Peer mentors will guide participants through the program as they learn to re-engage in meaningful roles and activities, learn and implement new skills, and navigate community and health systems.  The structure of the program will take participants on a journey to engage in meaningful life roles and activities that are tailored to each person.

Participants will identify interests, goals, and their definition of quality of life at the start of the program. The following tools will be used:  

• Goal attainment scale  
• Quality of Life measure  

Workshops and sessions will occur in parallel of each participant’s engagement in interests and goals. Participation will be strongly encouraged by the program facilitators with enough flexibility for participants to be free not to attend sessions that are not relevant to their journey.  

To build accountability and responsibility in recovery, participants will have to engage with group facilitators to let them know about attendance or non-attendance.  

This is a first-of-a-kind, ground-breaking and innovative program that will impact greatly upon the quality of life experiences for the SE-ED community.  Pivotal to this pilot will be the evaluation process and the impact that this has on establishing the SE-ED Project as part of EDV’s ongoing core business.  

The Program Trial will have two iterations:   

• Program One:  February – April 2022 (12 weeks)  
• Program Two:  May – July 2022 (12 weeks)   

Each program will:  

• have up to 15 participants, all of whom identify with having severe and enduring eating disorders (longer than 10 years)  
• be run over 12 weeks, with the choice of day or evening sessions  
• have a combination of one-on-one clinical sessions and group work session  
• have a mix of core sessions and optional choice sessions  
• have a support group for carers of loved ones with SE-ED  

The SE-ED program is currently only funded for the trial period, ending June 2022. Pending the outcome of the trial and ongoing funding from the Victorian Government, we hope to be able to continue to offer the SE-ED Program ongoing.