The Activating Lived Experience Leadership (ALEL) Project

in partnership with UniSA’s Mental Health and Suicide Prevention Research Group 

The Activating Lived Experience Leadership (ALEL) Project [2019-2021]:

[In Partnership with UniSA, funded by the Fay Fuller Foundation and supported by the South Australian Mental Health Commission] 

 

The broad purpose of the ALEL Project is to examine and describe how lived experience advocacy and leadership embedded within the mental health ecosystem can be defined, recognised and utilised in SA. Our aim is to influence and effect ongoing system change through action and research.

The questions that underpin the project challenge the status quo in SA, and around Australia more broadly. Change is urgently needed to enable consumers and carers to participate in a leadership future developed by, for and with the peer community. The crucial need to develop effective strategies and pathways for lived experience leadership in SA is essential for people experiencing distress and mental health issues being valued differently. 

The ALEL Project is the most significant investment to date in this area of inquiry and action in South Australia (SA). 

 

If you have questions about this work please contact: Ellie Hodges, Executive Director of LELAN via ehodges@lelan.org.au or Mark Loughhead, Senior Research Fellow at UniSA via mark.loughhead@unisa.edu.au .

 

 

Project Updates:

Workshop on Lived Experience Considerations and Opportunities in Systems Change

To build on the systems and change aspects of the project we are offering a workshop on Systems Change: Lived Experience Considerations and Opportunities on April 29th. We know that a collaborative, cross-sector and multi-level approach is the best way to tackle these challenges and are committed to increasing knowledge, skill and action in this space.

The project team is delighted that in less than one week 45 people signed up for the workshop. Clearly this is an area of great interest!

For now, we have made the decision to close registrations but aim to run another session soon, as well as share our learnings in other ways.

Research Focus Groups Happening throughout April and May

A large milestone of the ALEL project has been reached this month through the commencement of Research Focus Groups with lived experience leaders. The focus groups were originally scheduled to begin in mid-March but due to COVID19 restrictions we had to resubmit to the Ethics Committee and move the sessions online.     

People based in South Australia who self-identify as a lived experience leader (consumer or carer) are encouraged to participate. Those that get involved may be active as an advocate, representative, community speaker or peer worker. These are all roles where leadership skills come into play in terms of raising awareness, working with services and systems, and promoting lived experience perspectives.

Whilst we have general dates set for focus group’s we also invite groups or organisations with lived experience leaders wishing to ‘host’ a focus group to get in touch with us.

A future research activity will be a national survey to hear from a wider group of lived experience leaders.

Project Advisory Group (PAG): Service Member Spotlight

We are fortunate to have a wonderful group of people with lived experience and service representatives advising the project team and helping to guide the project. Here we introduce you to Lisa Huber.

Intro to Lisa’s work and role:  As Principal Officer in the Office of the Chief Psychiatrist, I lead the Corporate and Strategic Advisory team.  Among many tasks/responsibilities, this team manages all the Ministerial and Chief Executive correspondence coming into the Department for Health and Wellbeing, which relates to the very wide mental health sphere, and also provides policy and project support.  Our work encompasses seeking the provision / obtaining lived experience perspectives including for Aboriginal people through the expertise of our Principal Aboriginal Mental Health Advisor, Ian James.  

What excites you about the ALEL Project and why it is important for you to be involved: ALEL provides a richness to the Lived experience landscape that we’re unable to obtain on our own (as a small office with limited capacity), while also gathering the evidence base needed to form a solid foundation for growth and legitimacy.

Why you think involving people with lived experience in change, or having them lead it, matters:  Because we still have work to do in breaking down power imbalances and stigma within our services and having a truly shared value system across all involved in delivering care and support.

Do you have one radical or innovative idea for how to improve lived experience voice, influence and leadership in SA: I think the Urgent Mental Health Care Centre, when we make it work as people with Lived Experience co-design it, will be a pretty radical service for metro SA.  

Any tips or advice for other services, organisations, departments or people in work roles about small (or big) actions they can take to support the involvement and leadership of people with lived experience: That we all keep talking and pushing forward with kindness and patience .

Is there something about you, unrelated to work, that you would like to share: I have double joints, albeit less flexible than they used to be – but I did some wicked contortionist moves (Party tricks) in my heyday!

Our Community of Practice Continues

In response to the System and Sector Leaders Summit we have been convening a Community of Practice for Lived Experience Leadership and Change. We have had two sessions so far filled with passionate people and rich conversation on important topics, including how we codesign the sessions for maximum engagement and impact.

Our March CoP started with this inquiry question: how do we use our own, or draw on, lived experience as a ‘lens’ in what we do and how we think about things rather than confining it to a ‘role’ that we have at any particular point in time and potentially narrowing the use and value of lived experience? In preparation we shared this article on consumer perspective from the Centre of Psychiatric Nursing at the University of Melbourne.

The conversation wandered far and over many landscapes, including: power imbalance and humanising systems; where our voice fits, particularly the quieter voices; how we make space for everyone in the collective; being a change agent and how we support people to amp this up; boundaries and feeling our way to where we stand; and practical tools we could develop to support people in their own reflection and action.

The next CoP will be held via Zoom on Wednesday May 6th, 9.30-11am. Broad starting point topics will relate to tensions within power imbalance and ally leadership. We know the conversation will go much further. If you would like to join us for the CoP please email info@lelan.org.au .  

System and Sector Leaders Summit: Summary Report Available

A Summary Report of the System and Sector Leaders’ Summit held last October has been released and can be accessed here.

Summit participants used the Six Conditions of Systems Change model to unpack the key factors that reinforce current conditions and hinder progress for lived experience leadership and change.

Some highlight quotes from the Summary Report are:

     -> People very much felt that the time is right for lived experience leadership to be developed and embedded in our systems, are frustrated that it has not already been done and acknowledge the challenge presented in moving forward.

     -> Other structural challenges identified were linked to the current dominance of the medical model for understanding and responding to mental health issues as well as the lack of political will and ineffectiveness of policy to drive change. Current approaches to change were deemed too narrow, short-sighted and without leadership.

     -> Collective efforts were seen as the only way to move forward on strengthening, embedding and creating space for lived experience leadership to flourish.

There was a strong suggestion that progress will occur only if it is led by an identified and recognised entity, so that it doesn’t get lost in the churn and existing demands of services and the system.

 The ALEL Project Team will continue to expand on the ideas generated at the Summit and take action on the suggested solutions. Some of these initiatives are addressed further down in this newsletter.

We are Convening a Community of Practice for Lived Experience Leadership and Change

In the new year we will be convening an ALEL Community of Practice focused on lived experience leadership and change.

Communities of practice typically involve people who don’t necessarily work alongside each other every day, but they find value and meaning in their interactions or shared area of inquiry. Members of the community consider new ideas and discuss possibilities on new ways of working and responding. They may share or develop resources, tools or guides, or generate co-production in key areas of interest. The ALEL community of practice will be developed as a ‘safe space’ to encourage discussion, information exchange and capacity building on lived experience leadership, advocacy and change in mental health.

Meetings will be held every six weeks starting Wednesday February 12th, 9.30-11am. Let us know if you would like to be a part of these conversations. 

About the Research Component of the ALEL Project

There is a formal research part of the ALEL project that will start in February 2020. The research activity has taken some months to design. This has involved working up a research protocol and sets of focus group and interview questions and an application for human research ethics approval with UniSA.  

The research project will involve focus groups across parts of the state where people who are active in lived experience advocacy, representation, education or peer work will be invited to become participants in the research.  

The focus of the discussions will be to explore the concept of lived experience leadership. What does it look like? How is it related to the different roles and activities that people do when supporting others, or seeking change, or raising community awareness? What pathways help people to become active? How is being a leader connected to personal recovery? And how the sector and services can better recognise and support leadership roles.

After the first round of focus groups, participants will be invited to participate in some online discussions which reflect on the first round of findings. Participants will also be able to contribute other ideas about leadership, mentoring having influence, or receiving or, providing support in the lived experience space. Everyone participating in the research will be able to access the same online discussions.

The third round of involvement will be further focus groups which are aimed at sharing the learning and from this premise co-creating training materials, resources and networks. These will be discussions which help create the content and format of future training resources.

A further part of the research project will be one-to-one interviews with service leader’s (directors, managers, safety and quality and policy leaders) around perceptions of and experience in the area of lived experience leadership and engagement. We will ask what in their experience suggests best practices in the area of mental health service, and ways to support people to become effective and influential lived experience leaders.

We will have more information about the research activities in February next year. But please get in touch if you have questions.

System and Sector Leaders Summit: Dialoguing for Change

In late October we held our first System and Sector Leaders’ Summit. South Australia’s key mental health and community service leaders, including peak body representatives, were invited to attend and to consider how we can improve the way lived experience is defined, recognised and utilised in South Australia. This is the key question at the heart of the research project.

Prior to the Leaders’ Summit, Ellie and Mark met individually with a variety of the invited leaders to discuss their perspectives on the current status of lived experience leadership, advocacy and engagement in sector decision making, and what changes could be considered for better recognition, partnership and influence.  Themes from these discussions were used as a basis of the summit meeting, to encourage reflection and to look at how we can make changes to culture, structures, policies and practices.  

Many ideas were expressed at the Summit and we plan to release a report in the new year. A number of potential actions were identified as important to the project and the sector. These are:

     -> Looking at the evidence base of lived experience involvement, particularly in terms of improving the quality and design of mental health services. We can then use evidence to promote further levels of investment and opportunity in co-designed services or lived experience led services

     -> Setting up a community of practice, which brings people together to collaborate in sharing knowledge and experience around engagement, partnership and supporting lived experience leaders

     -> Developing a lived experience framework for South Australia, similar to those being developed in other states. A framework could help promote the roles of advocacy, representation, education and peer support as key contributions that people provide to the wellbeing of South Australians.

Mental Health Lived Experience and Research: A Workshop

As a community development activity, we held a half day introduction to lived experience research workshop on October 1. This workshop focused on identifying the skills involved in searching for information and research that can be used in advocacy or learning about a particular topic, practice, or issue. The session focussed on exploring the area of lived experience engagement in research activity, and how consumers and carers can help to shape project design, aims, questions, recruitment and promotion.

Seventeen people attended the workshop and provided positive evaluations and ideas for how we could build on the content. We are interested in refining and offering the workshop again, please let us know if you would like to be involved in this.

The ALEL Project Advisory Group

In August, we advertised for lived experience advisors to join the Project Advisory Group (PAG). The role of this group is central to the project. Members of the PAG are active in guiding the design of the research project and also assisting with decisions about recruitment strategies, the types of research questions, analysis of themes and research findings, and helping to generate change as a result of the findings. 

Apart from researching leadership, the ALEL project has community development activities, which are about building networks, and engaging service leaders in conversations about the big picture of lived experience advocacy and change in South Australia. The Project Advisory Group members are also a part of these discussions. 

We received great interest for the positions that were offered for the Project Advisory Group and seven people with lived experience from a variety of backgrounds joined the group in August this year. There are five additional PAG members representing key organisations in the mental health sector.

Meet the Project Team

The role of the Project Team is to facilitate key actions of the project, in connection with the many people who are and will be involved.

     -> Project and LELAN Lead: Ellie Hodges, Executive Director LELAN

     -> Senior Research fellow: Mark Loughhead, UniSA

     -> Research Assistant: Heather McIntyre, UniSA

     -> UniSA Lead: Professor Nicholas Procter, Chair Mental Health Nursing UniSA