The knowledge and support of those who have been through eating disorders, and recovered, is increasingly considered an essential part of the recovery journey. This applies to individuals who are recovering from eating disorders as well as their loved ones and support people.

Lived experience and peer work can take place in a variety of settings through a variety of roles. This includes:

• Independent roles: Sharing personal stories of recovery, such as EDV Ambassadors. This may be in person, written, online or through the media. These roles are considered independent as they generally do not deliver 1:1 support to individuals.
• Active or continuous roles: Face-to-face or online support delivered directly to an individual through peer support, mentoring or coaching. These roles can support people with practical things such as meal support, cooking, shopping and eating out. They also provide emotional support through listening and sharing reflections through the lens of their own lived experience.

Lived experience also plays a vital role in the design and delivery of services, training and professional development, helping create more effective and person-centered care.

“It might sound small, but learning that recovery is possible with someone showing me, who has lived experience, makes change possible in real life. Having a mentor with a great attitude to food, culture and eating inspires changing my choices and learning to trust myself. ” – participant in EDV’s Peer Mentoring Program

Many people find the knowledge, understanding and insight of those with lived experience of eating disorders invaluable during recovery. While each individual will be different, reported benefits from published research include:

• Increased self-efficacy in recovery
• Decreased eating disorder behaviours and thoughts
• Increased treatment retention rates
• Sense of belonging and social connectivity
• Reduced shame and stigma
• Increased hope in recovery

“It is true support from someone who has been in your shoes. I have been so impressed with the level of understanding, care and knowledge I have gained by doing these sessions.” – parent in EDV’s Carer Coaching Program

Carers, families and supporters often feel isolated during the treatment and recovery journey. On top of this, the demands of the caring role, particularly for those engaging in family-led treatment, can lead to exhaustion and burn-out.

That is why finding support from those who have lived experience of supporting a loved one with an eating disorder can be so important. Connecting with someone who understands and normalizes what you are going through can provide a sense of belonging and relief. It provides an opportunity to learn new skills and develop coping mechanisms. Additionally, receiving support from those who have supported a loved one to full recovery provides hope that it is possible!

Currently, the availably of Carer Peer Workers is less than that of Consumer Peer Workers. However, eating disorder services are increasingly adding Carer Peer Workers to their teams. EDV’s Carer support services and EDFA’s support groups are great places to start.

There are a variety of ways to access lived experience and peer support in Victoria. The good news is that this is a growing workforce, which means options continue to increase. Depending on what service you access, there may be financial cost involved. Currently, there are no Medicare or private health rebates for private peer support.

At EDV, we are proud to offer a range of lived experience and peer support services that are entirely free for Victorians to access.

Lived experience and peer support services offered through EDV:

• Stories of Recovery

• Candid Conversations Podcast

• Peer Mentoring Program (PMP) (face to face, or online) fortnightly meet up over a 6-month period

• Online peer support groups, multiple groups, monthly

• Severe and Enduring Eating Disorders (SE-ED) intensive 12-week program, with group-based peer support sessions

• Carer Coaching Program, weekly coaching with a carer peer worker over an 8-week period

• Carer Courses (UPSKILL and RENEW), skills based small group courses led by carer peer workers

While these services are designated lived experience and peer support services, lived experience of eating disorders is present across all teams and services at EDV.

Other options for access

• Peer support through public eating disorder programs (e.g. hospitals, day programs, CAMHS/CYMHS services)

• Peer support through private eating disorder programs (e.g. The Geelong Clinic)

• Eating Disorders Families Australia – peer-led support groups and education sessions

• Private Recovery Coaches through the Carolyn Costin Institute

While the most important pre-requisite of lived experience and peer work is recovery from an eating disorder, at this stage, there is no further minimum training requirement to become an eating disorder peer worker in Australia.

Organisations like EDV are leading the way in developing and evaluating peer support services to ensure the safety and efficacy of eating disorder peer roles. Our 40+ year history of working in the peer space has enabled us to build strong organisational knowledge, which we continue to develop into evidence-based practice. All lived experience and peer workers at EDV receive thorough training, supervision and ongoing professional development.

When you are engaging with a lived experience or peer worker privately in the community, here are some questions you might want to consider asking:

• “What is your relationship like with recovery?”
  At EDV and across much of the industry, it is standard for lived experience and peer workers to be required to have a minimum of two years full recovery from their eating disorder. While recovery will look different for everyone, at EDV, we define recovered as someone who has been free of physical, psychological and behavioural symptoms of their eating disorder for a minimum of two years. There may be some unhelpful eating disorder thoughts sparingly or from time to time, but are managed swiftly and with a sense of ease. Here is how an EDV Peer Mentor describes recovery: “The definition and experience of recovery is unique to each individual but for me, I know I feel it is a sense of freedom, uninhibited by rules, barriers and fears.” – Amy T, EDV Peer Mentor

• “How do you think you can help in my recovery?”
  A peer worker should be clear on their professional scope of practice, including benefits and limitations. As mentioned above, peer workers are not replacements for clinical treatment, and therefore should be looking to work in collaboration with your broader treatment team.

• “What training or professional development have you undertaken?”
  As mentioned, there is no minimum training required for someone to call themselves an eating disorder peer worker. However, that doesn’t mean there isn’t training available. Some certifications or programs to look out for include:
  • Intentional Peer Support Training (IPS)
  • Certificate IV in Mental Health Peer Work
  • Mental Health First Aid Training and Suicide Prevention Training
  • Carolyn Costin Institute Coaching Course
• “Do you receive your own support?”
  Eating disorder peer workers should have their own support network and supervision in place. This allows them to debrief, seek guidance, and ensure they are providing the best possible support to individuals seeking recovery, while also looking after their own wellbeing.

• “Do you work in a weight-neutral approach?”
  You want to ensure that your peer worker focuses on self-acceptance and long term wellbeing. Anything involving dietary restriction or intentional weight-loss are red flags! Look for peer workers who endorse a Health at Every Size (HAES) approach.

• “What do you expect from me?”
  Peer relationships are a two-way street, so it’s important to be clear on expectations from both sides from the start. They may have a participant/client agreement for you to read and sign. It’s also important that you are clear about the financial implications if you engaging a peer worker privately. Make sure you have considered your availability and financial capacity before committing to anything.