Lived experience in leadership: the hard slog

In 2018, I hit an advocacy brick wall with a prominent suicide prevention organisation who claimed to represent and embed lived experience voices in all their work. I had argued long and hard that what they were doing was not true inclusion and received excuse after excuse. This led to feelings of frustration and burnout in my lived experience advocacy and I stepped back from the frontline for the next few years.

Today, after years of reset and work in the “back room” of suicide prevention, I find myself again, advocating for hard work to achieve true lived experience inclusion. The key change now is that the government, sector, and community are calling out for what I was calling for back in 2018. The National Suicide Prevention Advisers Final Advice recommended:

All governments commit to integrate lived experience knowledge into national priority setting, planning, design, delivery and evaluation of suicide prevention services and programs.

This, the report extended to all organisations in the suicide prevention sector. We have lived experience advisory groups popping up in many diverse organisations however do these roles allow for integration of lived experience knowledge in all the dimensions listed above?

The truth is, no.

The hard question we must ask is around how much decision making power people with lived experience are afforded within suicide prevention? Advisory groups are fantastic but they are just that, advisory. The members of these groups have little say over the agenda of their discussions or how their advice is implemented and achieved by an organisation. We are seeing the rise of co-participation models that still see people without lived experience designing processes and plans for review by people with lived experience. We need to challenge ourselves and ask how equal these relationships truly are.

So to the experience I am thick in the middle of. Despite the change in will of the government and sector, I am still hitting the same brick wall I hit back in 2018. I am working to embed lived experience in leadership positions at the same key sector organisation and the way the organisation is responding is very dated. It is not only the fault of those in power at this organisation, but the system itself does not allow for lived experience leadership, particularly when those who currently hold the power must give some of it over to lived experience. Power is a hard thing to change.

We expect people with lived experience to stand up, be counted and be heard but the sector doesn’t listen in meaningful ways. When people with lived experience are challenging to existing power structures, they are patronised, condescended to and then put back in their place. This is not good enough and needs to change if we are to see true progress in this space.

My call to action for people with lived experience is that if you find yourself in this space, know that there are allies dispersed in the power structures. Find them and leverage their relationships to get your message actioned.

My call to action for people in positions of power is to dismantle the structures that make suicide prevention a frustrating and wearing experience for people with lived experience of suicide. You have the ability to create space, share power and truly include people with lived experience.

We need both parties to achieve effective suicide prevention and must only work in partnership.