Challenges with involving persons with lived experience in suicide prevention programs

The Productivity Commission has just released the interim report of its review on the Mental Health and Suicide Prevention Agreement.¹ The report discusses the role of lived experience in suicide prevention services. Although there are National guidelines on the development of the lived experience workforce in the mental health sector² and various states, peak bodies and organisations have started incorporating lived experience into their work, the inclusion of persons with lived experience in suicide prevention programs is still emerging.^3,4 In this Letter, we highlight some of the continuing challenges with the involvement of individuals with a lived experience in suicide prevention programs.

For instance, where there is intent to involve lived experience, there should be consideration of who is chosen for the role. Individuals take up lived experience roles for a variety of reasons such as wanting to heal, to help others, to share a voice they did not previously have, etc. When the reason is a desire to heal, the need to navigate policies with little understanding of how programs and bureaucracy work, can be exasperating for them. This could also negatively affect the program as a whole. Finding people with lived experience who are healed enough to meaningfully contribute, is therefore crucial. There is also a need for capacity building of the lived experience representative to ensure they have an understanding of the sector, of the processes of decision-making, of funding allocation and program design. Organisations need to ensure that the existing bureaucracy is not triggering for them.

Furthermore, lived experience involvement can be harmful for those individuals when there is inadequate planning and considerations to support involvement. There are frameworks in place to guide organisations to support the inclusion of and engagement with lived experience individuals.⁵ However, these frameworks sometimes become tokenistic and are reduced to a tick box exercise with no real lived experience inclusion. This can result in lived experience individuals becoming dissatisfied, disillusioned and re-traumatised.

Lived experience collaboration is an investment. It takes much planning and training to develop strategies and to implement them. Nonetheless, with any good investment, the return is generous and makes the initial investment worthwhile. The long-term benefits outweigh the short-term work required to do it right. Appropriately planned and considered implementation of lived experience will go a long way to improve care and services for those who have considered or attempted suicide.