Authors: Bernadette Montenegro, Angela Nolan, Darryl Ballestrin, David Butt, Violeta Peterson, Rebecca Langman, Wilhelmina Brown, Candice Fuller & Carrie Lumby
Event: 2023 The MHS conference - Adelaide
Subject: Co-Design & Leadership
Type of resource: Conference Presentations and Papers
Presentation 1: Codesign as an act of radical democratisation in mental health.
Authors: Bernadette Montenegro & Angela Nolan
Codesign is essential for fostering the recalibration of individual agency and systemic governance of mental health service and delivery. This checklist is more than just lip service to ‘Nothing about us, without us’ and provides a meaningful first step in creating ‘services for the people, by the people.’
Katterl highlights the important role codesign has to play in a human rights approach to mental health and was our inspiration for our presentation. “A lack of choice (in treatment) is in stark contrast to a human rights approach that states people do have the right to access quality mental healthcare that is not based on discrimination. Such mechanisms require a radical democratisation of how we understand who is an 'expert' in that process." (Katterl, 2022)”.
Establishing codesign as 'best practice' in a clinical setting is not easy. Our resource provides a prototyped example of how codesign could look. The checklist is a practical resource to try out and fine-tune according to services’ distinct needs.
Our presentation aims to bring humanity into focus. Simple questions like ‘whose voice is missing?’ can cultivate a codesign mindset and 'radical democratisation’.
Codesign is an act of honouring our interconnectedness and the right to be human.
The presentation will explore the enablers as well as the challenges of recent Northern Health Codesign projects. One such project was the implementation of new escalation of care service for patients, consumers and carers and how this would be delivered within a mental health service.
Burkett, I. (2016). Co-designing for Social Good: The Role of Citizens in Designing and Delivering Social. Sydney: Knode. Retrieved February 2, 2023, from https://www.yacwa.org.au/wp-content/uploads/2016/09/An-Introduction-to-Co-Design-by-Ingrid-Burkett.pdf
Katterl, S. (2022, July 20). Framing mental health policy with human rights in mind. Retrieved from Croakey Health Media: https://www.croakey.org/framing-mental-health-policy-with-human-rights-in-mind/
Mental Health Complaints Commissioner. (2022, June 7). Lived Experience Engagement Checklist. Retrieved from Mental Health Complaints Commissioner: file:///C:/Users/NolanAng/Downloads/MHCC%20Lived%20Experience%20Engagement%20Checklist.pdf
Presentation 2: Shifting the Balance of Power: Moving beyond a seat at the table to equality in decision making.
Authors: Darryl Ballestrin & David Butt
Throughout history many people with a mental illness have had their rights to decision making removed from them. From the barbaric time of lobotomies and asylums to current day involuntary treatment orders, those with a lived experience of mental illness have had to fight to be heard and included in decision making. While much progress has been made in this space with consumer representatives and advisory groups, few have given those being consulted an opportunity to be a key decision maker. This is not the case at GROW Australia. For more than 65 years our program has been written and governed by those who use it. At every level of governance staff sit as a minority who have an equal vote to consumers on issues relating to the program. Being consulted is not the same thing as being a decision maker. If organisations were serious about including the consumer perspective they wouldn’t just give them a seat at the table, they would give them decision making power, as is the case in the Grow Program. This type of inclusive governance has it’s challenges but it can be done extremely well resulting in true lived experience leadership.
1. The audience will learn how the balancing the distribution of power will have an effect on decision making and ultimately, outcomes.
2. The presentation will explore the model of an established mental health program which champions lived experience leadership.
Presentation 3: Leading from Lived Experience Expertise: Implementation of Director Roles in Alfred Mental & Addiction Health.
Authors: Violeta Peterson & Rebecca Langman
In 2021 the early stages of the Lived Experience Workforce Transformation Strategy started to take shape within Alfred Mental and Addiction Health (AMAH). In response to the Royal Commission into Victoria’s Mental Health System, recommendations for the expansion of a lived experience workforce and opportunities for leadership roles to inform policy and programs, led to the development of a Lived Experience Workforce Framework identifying key principles and actions.
With the support of Dr Louise Byrne, a Lived Experience Expert leading the strategy, the framework focused on a series of commitments to understand, value, support and resource the Lived Experience Workforce.
A key element of the framework highlighted the need to employ Lived Experience roles at all levels of AMAH including roles with the authority for systemic and cultural impact. Further evidence of this action was emphasized in AMAH’s 2022 Transformation Priorities Plan to embed lived experience in the leadership, design and delivery of services. AMAH has established both Director of Consumer and Carer Lived Experience roles, acknowledging the expertise and designation needed for the two disciplines. The Director of Lived/Living Experience roles were developed in partnership with the AMAH lived experience workforce, Tandem the peak body for mental health families and carers and VMIAC the peak body for mental health consumers.
As with any strategic plan to improve and expand on new workforce initiatives, the pains and gains of embedding the Lived Experience Director roles in AMAH have presented insightful learnings for both the broader health service and other organisations preparing to lead transformational change.
‘For true system transformation to occur, we argue it is essential for more attention and resources to be allocated to cultivating leadership skills among persons with lived experience of recovery and for opportunities to be created for such individuals to take on senior-level leadership positions within their respective countries and communities’. The Global Need for Lived Experience Leadership (2018).
This panel presentation will aim to demonstrate why a thriving Lived Experience workforce with embedded Executive/Director leadership roles is key to ensuring meaningful lived experience perspectives and that participation is present at all levels.
1. The audience will develop and grow their understanding of the creation and implementation of executive director lived experience roles in a public mental health service. The panel will articulate achievements, challenges and barriers to authentic lived experience leadership
2. Leadership of people with lived experience in mental health services
L. Byrne; D. Davidson; A. Stratford (2018): ‘The Global Need for Lived Experience Leadership’. Psychiatric Rehabilitation Journal, Vol 41, No 1, 76-79
Byrne L, Wykes T. A role for lived experience mental health leadership in the age of Covid-19. J Ment Health. 2020 Jun;29(3):243-246. doi: 10.1080/09638237.2020.1766002. Epub 2020 May 23. PMID: 32449392.
Presentation 4: Learning from each other: exploring the co-production process.
Authors: Wilhelmina Brown & Candice Fuller
Choice is at the cornerstone of mental health consumers exercising their human right to actively engage in their health care (OHCHR, 2018). In a service-dense region navigating this choice is an ongoing challenge.
To address barriers of service navigation CESPHN commissioned the Bright Agency to develop Headstart Central and Eastern Sydney, an online platform that provides access to local mental health information and services for people who are experiencing mental health concerns, as well as their friends, family, and carers. Rather than providing a directory of services or listings based on geography, the user answers questions about their needs and is directed to services they may be eligible for.
To ensure that Headstart Central and Eastern Sydney met the needs of the region, the Headstart Working Group was formed to co-produce the content of the platform. This group was formed from PHN representatives, members of the Bright Agency, other health stakeholders, and four lived experience representatives.
Through clearly defined roles and responsibilities and creating an environment of trust and respect, this working group regularly met to provide ideas, discuss proposals, and approve content. They provided vital insight into how the tool would be used by people in the community and ongoing maintenance.
Identify enablers and barriers of co-production which can be applied when commissioning services to ensure service design promotes safe and inclusive design.
Office of the High Commissioner for Human Rights. (2018, May 24). Mental health and human rights. Retrieved February 7 2023, from United Nations:
Central and Eastern Sydney Mental Health and Suicide Prevention Regional Plan (2022). Central and Eastern Sydney Mental Health and Suicide Prevention Regional Plan: Implementation Report. Sydney: CESPHN.
Central and Eastern Sydney Mental Health and Suicide Prevention Regional Plan (2022). Central and Eastern Sydney Mental Health and Suicide Prevention Regional Plan: Implementation Evaluation Report. Sydney: CESPHN.
Presentation 5: The Future of Lived Experience Leadership: We need to change the way we work to achieve systems change
Author: Carrie Lumby
There is no doubt that ‘lived experience’ is having its moment in the sun of national mental health reform. The right authorising environment, the maturity of lived experience movements, as well as broader community awareness of the need to do things differently to improve our responses to mental distress, have coalesced into a unique cultural moment. It's a time when lived expertise could become the engine that drives transformational systems change.
For this change to be effective, however, we need to let go of the romantic notion that Lived Experience leadership is naturally different in quality to the conventional leadership style of traditional experts that has frustrated systems improvement efforts in the past.
In my former role as the National Mental Health Commission's inaugural Director, Lived Experience, I was given a unique opportunity to experience first-hand the way Lived Experience leadership can mirror the most unhelpful qualities of conventional leadership, further entrenching an approach to decision-making that has made the mental health system harmful and ultimately ineffective.
This cultural moment is therefore also a moment in which the lived experience movement must take responsibility for cultivating and elevating the type of collaborative leadership required for doing the urgent and thoughtful work of complex systems change.
This presentation will articulate a vision for what this type of leadership looks like and provide some concrete suggestions about how the lived experience movement can enable it to thrive.
1. For lived experience driven systems change to be effective, the lived experience movement must lead differently to the conventional style of leadership that has entrenched systemic inequality and harm.
2. Understanding how to effectively embed lived experience expertise across the mental health system and its reforms has the capacity to achieve transformational and enduring change.