Engaging Lived Experience

‘Lived Experience’ is a collective term used to refer to both consumer representatives and family/carer representatives. NSW Health refers to these roles as consumer representatives or consumer advisors. 

These individuals bring their lived experiences of an eating disorder or caring for someone with an eating disorder, services and recovery as patients, carers, or family members, to influence healthcare planning, delivery, and evaluation. 

How can lived experience (LE) representatives contribute to improving eating disorder treatment and outcomes in your Local Health District? 

LE representatives play a crucial role in healthcare development by ensuring that policies, programs, and services are responsive to the needs of individuals with eating disorders and their families. 

Key contributions: 

• They bring their unique perspectives and expertise to the table, promoting self-determination and advocating for positive change 

• Enable professionals to better understand and more easily relate to people with eating disorders and their families and carers 

• Improve communication between clinicians and people with eating disorders. 

• Establish trusted and productive working relationships. 

How LE representatives can actively contribute: 

• LE representatives can help by contributing on a regular basis as members of committees and/or
  specific project working groups 

• Contribute to education or training sessions by sharing and advising from their personal experience. 

What should be considered when working with LE representatives to optimise outcomes? 

Provide introductory education:  

• Clearly define their role and acknowledge that their voice and feedback is important  

• Outline time commitments, including duration of commitment and how they will be recognised for their contributions (in line with the NSW Health Remuneration policy) 

• Explain how the committee or working group functions and its purpose 

• Identify the people on the committee or group and outline their roles (including job title and function within the LHD). 

• Provide context regarding the committee or working group, including: 1. Background information; 2. Key projects and challenges; 3. Organisational structure, system regulations, and funding that shape available solutions; and 4. Medical terms and acronyms. 

Identify and nominate a committee member as the link for the LE Representative.  

Role of the committee member identified as the link: 

• Provide a safe confidential space for feedback and an opportunity to debrief or express concerns 

• Offer compassionate support, recognising that meetings may at times present emotional challenges, and it’s important to foster a space that feels safe and supportive 

• Keep the LE representative informed and up to date with relevant information and changes. 

Create a safe environment that promotes the LE representative to feel respected and valued. 

Consider the following: 

• Ensure that the LE representative is warmly welcomed on board as an equal team member (an informal icebreaker is an encouraging and inclusive introduction to the role) 

• Clearly define the role and value of the LE representative to the committee or working group members 

• Foster a committee culture grounded in respect and inclusivity, where the LE representative is recognised as a valued contributor 

• Be attentive to body language and other non-verbal cues to support a welcoming and psychologically safe environment 

• Alongside the LE representative, emphasise the importance of self-care for all participants 

• Clarify situations and points raised during discussions to ensure all participants feel engaged, informed, and comfortable contributing 

• Proactively restore safety or inclusivity when it is lacking and apologise when you get things wrong. Promote ongoing, two-way learning to build a collaborative, respectful, and effective working relationship 

• Ensure LE representative feedback is a standing item on the agenda. 

Promote the wellbeing of your LE representative and sustainable participation. 

• Recognise that your LE representative contributes as an advocate, team member and contributor, not to receive clinical care. They are empowered to decide when they feel ready and well enough to participate. 

• If wellbeing concerns arise, approach the LE representative directly with openness and respect, inviting them to decide whether they wish to continue or take a break. 

Support for Working with LE Representatives 

If you have difficulty finding a representative with lived experience in your LHD, IOI maintains a database of lived experience representatives who may have expressed an interest in working directly with their LHD. Please contact a member of the State Team at IOI and they can assist in making a connection between your LHD and an interested local LE representative.  Then your LHD can follow local procedures to formalise the relationship.  

If you need more information or support about working with a lived experience representative, please contact:  

Bronwyn Carroll 

IOI Lived Experience Representative 

bronwyn.carroll@sydney.edu.au 

Resources for Further Information: 

NSW Health  

All of Us: A guide to engaging consumers, carers and communities across NSW Health. 

https://www.health.nsw.gov.au/patients/experience/all-of-us/Pages/default.aspx 

NSW Health  

Remuneration: Fact sheet for staff and organisations.  

https://www.health.nsw.gov.au/patients/experience/Pages/remuneration-staff.aspx#:~:text=How%20much%20is%20paid?,organisations%20from%20paying%20higher%20rates. 

NSW Health  

Remuneration: Factsheet for consumers, carers and community members.  

https://www.health.nsw.gov.au/patients/experience/Factsheets/remuneration-consumers.pdf