UNDERSTANDING AND DEFINING THE ROLES
Lived Experience roles exist in diverse organisations and settings, spanning entry level to executive leadership roles. While it’s true that everyone has some experiences of distress and adversity, not everyone has significant challenges that take their lives in an entirely new direction. Lived Experience roles are primarily informed by life-changing challenges and experiences.
What's in a Name? Language in this space is evolving and will continue to change over time. There are differences in the preferred language for Lived Experience informed roles in some settings and countries.
Terms to describe Lived Experience informed work/perspectives include:
Peer, Survivor, Service User, Consumer, Mad Studies and others.
At times we use different terms in our research studies depending on the terms common to particular settings or countries. For our broad work we favour Lived Experience, but acknowledge this is not everyone's preference and respect other terms as part of the multiple perspectives central to this work.
What is a 'Lived Experience role'?
Lived Experience workers have had life-changing personal experiences with mental health and/or alcohol and other drug use, accessed support services, had periods of healing/recovery, and are employed in diverse roles to use their ‘lived’ expertise to help other people accessing services.
Lived Experience roles are not only informed by an individual’s experience with adversity, service use or even recovery, rather it’s how those experiences are contextualised in relation to Lived Experience concepts and literature, as well as shared issues of marginalisation, loss of identity and impacts on personal agency.
Ultimately, Lived Experience work is about how experiences are understood and applied to benefit others.
Lived Experience workers are commonly employed in settings and services focused on: mental health, disability, suicide prevention, and alcohol and other drug use, to improve outcomes for people accessing services. Increasingly Lived Experience roles are also being established within the wider workforce, in industries such as mining, construction and energy to improve the wellbeing of workers.
Lived Experience roles are varied and include positions providing; direct support, advocacy, management, research, education, training and/or consultancy.
What is the lived experience needed for Lived Experience roles?
Challenges with mental health and/or alcohol and other drug use that significantly impact a person’s life so much they redefine their idea of themselves, their vision for the future and their place in the world.
Personal identification with and experiences of service use
Having the same type of experience/identification and or cultural background is not always necessary. However in some circumstances (e.g.: involuntary settings, hearing voices programs, culturally specific services etc.), and at particular times in an individual’s healing journey, it is important that people accessing services can connect with someone who understands their unique circumstance. To ensure this happens, increasingly specialist Lived Experience roles are being developed to employ people who have experienced:
mental health challenge/alcohol and other drug use
whatever unique experience/identification or culture people accessing services have in common
Note: In some contexts and settings 'Lived Experience workforce' as a title has come to include both roles informed by personal (direct experience) as well as experiences supporting others who are accessing services.
However, these are still recognised as distinct workforces with different roles.
The majority of our already published studies have focused on roles informed by direct or personal experience of service use and so the definitions so far focus on roles informed by direct experience.
As our studies/articles which have explored roles informed by experiences of supporting someone else become available (are published) we will up-date both the definitions page and the research summaries.
What makes Lived Experience roles effective?
Lived expertise, not just having a lived/living experience but what has been learned through that experience and how it’s applied
Work that is values-based and authentically Lived Experience informed, person-directed and aligned with recovery principles
Significant understanding and ability to use personal story effectively and appropriately for the benefit of the person accessing services
Show that recovery is possible and it's not a linear journey - it's natural to have ups and downs and that's okay
Trauma-informed: awareness of the role and impact of trauma and wish to respond compassionately and sensitively
Willingness to potentially face discrimination/negative attitudes as a result of being 'out' about their experiences
Links with and understanding of the wider Lived Experience movement and concepts including Lived Experience-led research/training
Greater flexibility and ability to be responsive to the person accessing services
Specialisation based on specific experience, such as working with youth or expertise, such as eating disorders, may be useful depending on the setting and population
A bridge between organisations and people accessing services/supporting people accessing services
Ability to challenge power imbalances and provide more equity in support
Strengths-based, focused on the relationship/person
Being an advocate/change agent
'Lived Experience' and 'lived experience'
You may notice we alternate between capitalising and not capitalising ‘lived experience’. The capital Lived Experience refers to the professional: designated roles and workforce issues, non capitalised lived experience refers to the personal: having a lived/living experience but not necessarily working from that perspective.