S39: Lived Experience Perspectives & Challenges

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By October 5, 2023 No Comments

Authors: Sharon Lawn, Darren Jiggins, Rosemary Dickson, Tim Coombs, Emma Cadogan, Gareth Edwards, Clare Davies, Zoey Ka, Kate Fiske & Tracey Parnell

Year: 2023

Event: 2023 The MHS conference - Adelaide

Subject: Lived Experience Perspectives & Challenges

Type of resource: Conference Presentations and Papers

Presentation 1: Talking about things important to me: Lived Experience perspectives on mental health consumer-rated measures.
Authors: Sharon Lawn, Darren Jiggins, Rosemary Dickson & Tim Coombs
Since 2002, the National Outcomes and Casemix Collection (NOCC) of clinician-rated and consumer-rated measures have become part of routine care, aiming to ensure that services understand, improve and are accountable for the effectiveness of the care that they provide. Use of consumer-rated measures, done well, supports the basic human rights of consumers to be asked, heard and included equally in their own care. However, their use has lagged due to clinician inertia, uncertainty about their value to clinical care, assumptions about consumers’ capacity to complete the measures, and organisational cultural issues that have hampered more holistic assessment and consumer inclusion and collaboration in care.1
In this presentation, we will debunk several of these assumptions by reporting on research with consumers about their positive experiences of completing consumer-rated measures. Interview questions were co-designed with Lived Experience and clinical advocates, and interviews and their thematic analysis conducted by Lived Experience researchers in collaboration with the AMHOCN team. Themes describe consumers’ preferences for completing the measures, the importance of explaining their purpose to avoid being merely seen as an administrative exercise, how the process validated their feelings and was an opportunity for self-reflection, sense-making, trust-building and transparency in the encounter and empowerment.2
Learning Objective
Delegates will learn about the true value of consumer-rated measures from the Lived Experience perspective. They will gain knowledge of how best to use consumer-rated measures to enhance dialogue between the person and worker to ultimately improve outcomes for all concerned.
1. AMHOCN (2022) Mental Health National Outcomes and Casemix Collection: Technical specification of State and Territory reporting requirements, Version 2.10. Australian Mental Health Outcomes and Classification Network. https://docs.validator.com.au/nocc/02.10/
2. Lawn S, Jiggins D, (2022) Talking about things important to me: Mental health consumers’ positive experiences of having mental health outcomes measured. Adelaide: Lived Experience Australia Ltd.

Presentation 2: Consumer Perspective Supervision: Creating Connection and Changing the World.
Author: Casper Sela
Consumer Perspective Supervision (CPS) is a unique form of discipline-specific supervision that seeks to empower the consumer workforce by promoting their leadership, voice, and expertise in their work. It acknowledges the systemic barriers that marginalized communities face and creates a space for exploration and transformation through lived experiences and shared stories.
Values of self-determination, connection, mutuality, responsibility, authenticity, transparency, hope, and curiosity guide CPS in practice. Through this foundation, individuals and communities are encouraged to take responsibility for their actions, while simultaneously recognizing the limitations and impact of systemic oppression.
CPS offers a platform for individuals to work collaboratively from a consumer perspective to find ways to challenge systemic issues. It promotes person-centred services and relationships that recognize the dignity and worth of every person. By prioritizing consumer-led ways of practice and perspective, CPS aims to build and sustain the consumer workforce while promoting values and principles that advance equity, justice, and freedom for all.
Learning Objective
1. Understand the values and principles that underpin Consumer Perspective Supervision (CPS)
2. Appreciate the role of CPS in promoting systemic change through lived experiences and shared stories by:
- challenging systemic issues
- promoting person-centred services and relationships that recognize the dignity and worth of every person
- advancing equity, justice, and freedom for all
Daya, Indigo, Bridget Hamilton, and Cath Roper. “Authentic Engagement: A Conceptual Model for Welcoming Diverse and Challenging Consumer and Survivor Views in Mental Health Research, Policy, and Practice.” International Journal of Mental Health Nursing 29 (September 1, 2019). https://doi.org/10.1111/inm.12653.
Byrne, Louise, Anthony Stratford, and Larry Davidson. “The Global Need for Lived Experience Leadership.” Psychiatric Rehabilitation Journal 41 (March 1, 2018): 76–79. https://doi.org/10.1037/prj0000289

Presentation 3: Engaging lived and living experience expertise – the challenge of inequity.
Authors: Emma Cadogan, Gareth Edwards & Clare Davies
The Royal Commission into the Mental Health System in Victoria (the RC) found that the mental health system has failed to serve the needs of consumers and their families, carers and supporters through poor access, high rates of coercion and a narrow range of hospital-based and clinical services. The RC highlighted lived experience-led service delivery and partnership in decision making across the mental health system as a key strategy for reform.
To achieve this, the design and implementation of reform initiatives need involvement and leadership of people with:
• lived and living experience;
• lived and living experience workforce expertise; and
• professional experience and expertise in working in the mental health/AOD system in lived and living experience roles
• professional experience and expertise in working in the mental health/AOD system in change focussed roles, strategy and policy development, operational implementation, quality improvement and change management and research, analysis and evaluation.
Years of underfunding and lack of strategic planning has created a very limited pool of people with established lived and living experience and professional expertise that can be engaged as consultants or contractors lead mental health and AOD reform. They are usually independent freelancers, and without the backing of an organisation (e.g. academic institutions; not-for-profit organisations consultancy agencies like KMPG, PWC etc.) our lived and living experience experts in Australia experience disadvantages and inequity in being able to be part of the leaders of reform.
There are significant challenges for sustainability and growth of independent lived and living experience expertise at this level that need to be addressed if lived and living experience leadership across the mental health system is to be realised.
The Department of Health Victoria has heard a range a challenges experienced by LLE experts that include:
• The amount of unpaid work ahead of any contracting and payment
• Developing skills and experience to be able to move into consultancy/contract work
• Burden of responding to tenders/proposals
• Inadequate administrative support
• Burnout or risk of burnout due to personal investment and over commitment
• Undervaluing or underestimating work and not costing adequately
• Access to mentoring, supervision and collegial support
This presentation will share ideas how to grow, support and sustain independent lived and living experience expertise and a related model that is in development in Victoria.
Learning Objective
Workshop participants will be able to:
• Describe challenges and opportunities related to contracting lived and living experience experts/leaders
• Describe ways to attract and grow this invaluable resource through mentorship, coaching and peer support
• Describe a range of supports to create greater equity for lived and living experience experts engaging in mental health reform through consultancy and contracting.

Presentation 4: The coming together of lived experience and what it means to find your north.
Author: Zoey Ka
The importance of Lived Experience Leadership (LEL), more than ever, needs to be a driving factor within service design and reform. LEL is an emerging term and broadly means “an activity where people stand up and speak up for the recognition and valuing of lived experience (LE) and advancing the movement”.
The Finding North network is a secure and private online platform for people who are interested in exploring the concept of lived experience leadership. It’s considered a “safe-enough” space for members to connect, learn and share “I’ve been there too!”.
The Finding North Network has marked its 18 months anniversary achieving membership of more than 200 people across Australia and we want to share our learnings and reflections on the journey so far.
The presentation will showcase, that when given an opportunity, people join forces to achieve great things. The network and its members work together to amplify lived experience and to encourage others to share their story and influence change. Our catch phrase is "what is your North?” what matters to you? when you connect with your North it is amazing what outcomes can be achieved.
Lastly, Finding North has also expanded to a national mental health website helping to inspire people and assist them to navigate the mental health system. This website is another opportunity for people to share their story, squash stigma and to let other people know what works.
Learning Objective
1. Examples of what it means to find your north by our lived experience network members
2. The network is an exclusive network for people with a lived experience of mental health conditions, it inspires hope and is a community of people who want to share their experiences and expertise.
¹Loughhead, M, McIntyre, H, Hodges, E & Procter, N.G (2020), Lived experience leadership for organisational and systems change: a scoping review of concepts and evidence, University of South Australia and Lived Experience Leadership and Advocacy Network SA, Adelaide.
²Yeung, W., Hancock, N., Honey, A., Wells, K., & Scanlan, J. (2020). Igniting and Maintaining Hope: The Voices of People Living with Mental Illness. Community Mental Health Journal, 56(6), 1044-1052. https://doi.org/10.1007/s10597-020-00557-z

Presentation 5: Hope, recovery and humanity: Lived experience leads learning.
Authors: Kate Fiske & Tracey Parnell
The Listening to Voices Project is where critical conversations about mental health and the mental health system intersect with the performing and visual arts as a vehicle for personal and collective transformation. Following successful “theatre as pedagogy” sessions with health students, Listening to Voices, Charles Sturt University and the Three Rivers Department of Rural Health collaborated to co-design and co-produce a unique online education resource.
Those with lived experience of trauma, psychological distress and the mental health system offer their unique insights on stage and in film. They are the essential contributors to the design and development of a resource that is shaping possibilities for authentic and balanced learning in classrooms, services and courses. Within the education and health sector, the successful collaboration required to produce this resource involved a paradigm shift from traditional pedagogy to one that positions people with lived experience as experts. The process also required a shift towards justice – that is, an unambiguous focus on the rights of all people to be included in society through meaningful participation, grounded in their chosen identity.
This presentation will provide an overview of the resource and highlight how through engagement with the Listening to Voices material, people can: develop respect for the lived experience of mental health issues: understand the issues people face in navigating the mental health system; explore power structures and discrimination; and build their capacity to advocate for a more just system.
Learning Objective
Upon completion of this presentation participants will:
• be familiar with the Listening to Voices online resource;
• appreciate lived experience and theatre as powerful educative tools;
• understand how the voices of people with lived experience of mental health issues can be authentically embedded into education activities to develop knowledge, skills and attitudes for practice.

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