What is it all about? Better engagement!

If you want to know the road ahead, ask those coming back. Or so says a Chinese proverb.

Yet traditionally, those who experience suicide aren’t asked how to help prevent suicide.

There has been a long history of disenfranchising people who experience suicide. You may be shocked to learn that complete decriminalisation of suicide in Australian states and territories did not happen until the 1990s which means that if you attempted or died by suicide, you committed a felony and this came with criminal consequences. This remains the case for some countries around the world today.

These days if you express suicidal desires or make an attempt, under the various legal provisions in each state, you may be involuntarily admitted into hospital care if you are deemed to be “a risk to yourself or others”. This is based on the premise that if you are suicidal, you are no longer able to make decisions about your own care and so a health practitioner must make them for you. This attitude persists throughout the suicide prevention sector, and not just in the hospital system.

And whilst many people who are suicidal need immediate care, that care is assumed to be medical in nature and is often traumatic.

People with a lived experience of suicide are changing this narrative.

In 2008, I attempted suicide and found myself in hospital requiring medical care to undo the damage that I had inflicted on myself. Deeply afraid of being involuntarily admitted to hospital, I lied about the true reason I ended up in hospital. I didn’t understand much of what I was going through at the time but I have learnt a lot since then. The thing about suicide for me is that it passes. I can feel deeply suicidal and panicked one night and then wake up in the morning with a little more hope for the future. For me, keeping me safe with suicide is providing the support and care that helps me manage my thoughts of suicide in a crisis state. Involuntary admission to hospital is not what I need. Compassionate care and understanding is.

If we didn’t listen to voices like mine, we would continue to involuntarily admit people who are suicidal to hospital and continue to traumatise them through inappropriate care. This is highlighted by the move for more safe spaces where people who are thinking of suicide can go and talk to people with lived experience who get what they are going through and can listen and provide non-judgemental care. This is a movement driven by lived experience.

After being hospitalised, I found my way to a lived experience advisory committee at Suicide Prevention Australia. The aim was to draw on our experience of suicide to inform the way they advocated in the sector. I was joined by people who had lost their family members to suicide, had experienced suicidality themselves or who cared for people who were suicidal. We talked at length about what the sector needed to hear from people with a lived experience and we shared our stories. It was a deeply transformative experience and I not only learnt a lot about my own experience but also was able to use my experience to influence change in suicide prevention.

This was the first of many advisory roles that I have had over the last 10 years and I have seen a change in how people like me are treated. We used to be treated like we were fragile, like protection and safety needed to be wrapped around us in order to not trigger emotional distress. We used to be engaged because it was “best practice” and made “experts” feel like they had done their community consultation. We were used as a story to humanise “real expert” opinion and to get the tears going or motivate people to donate money to suicide prevention. Luckily, things are changing.

Today lived experience inclusion in suicide prevention is commonplace and this has happened rapidly in the last 5 years. We are engaged in roles with names like peer worker, advisor, advocate and there has been some attempts at building frameworks for appropriate inclusion but they have been disparate and oragnisationally specific. Some organisations have gained prominence like Roses in the Ocean who work to train people with a lived experience of suicide to engage in sector activities and who also advocate within the sector for organisations to better their engagement. It is a two way street, with structures needed for not only the people with lived experience but those who engage them.

This is where my research comes in. The time has come to take stock of where we have come and to work out what needs to be done next. There is a lot of focus on suicide prevention at the moment and the way it engages people with lived experience with the work of the National Suicide Prevention Taskforce in the last few years. Big government money is being spent on this work yet we don’t have a secure foundation on which to build the movement over the next 10 years. A lived experience advocate recently said at a conference “we have a seat at the table, now we want a majority” but what does that look like and is it appropriate?

A quick scan of the scientific literature shows that while people with lived experience have been included, it is as research participants in identifying risk factors. They are also asked about their experiences as peer workers or what it means to have a lived experience. There isn’t much that tells us how to engage, why to engage or to what benefit.

In the grey literature, we have things like the Senate Enquiry into Suicide in Australia of 2010 that has one line about the importance of including lived experience and then right up to the 2021 Prime Ministers Advice into Suicide Prevention that contains a whole book on including lived experience. Organisations have developed frameworks for how they engage lived experience often in consultation with academic institutions and we have population specific guidelines such as how we engage lived experience in reducing Aboriginal and Torres Strait Islander suicide.

We now need a complete picture. So why not a scoping review! This scoping review will capture a picture of what lived experience inclusion in suicide prevention looks like and how it has changed over time. I hope to identify gaps and further lines of enquiry that will inform the next part of the project. Having a deep understanding of what is out there, I have a feeling where things might be headed but it is important to do this work in a systematic way that removes the bias of opinion and politics.

In recognising that this literature base is most likely inadequate for answering all the questions we need answers for, I aim to complete further studies asking organisations, government policy makers and those with a lived experience about their perceptions and needs in this space.

I hope to answer questions like:

• How does lived experience knowledge compare to traditional forms of knowledge?

• What do people with lived experience and organisations need to engage positively and impactfully in the sector?

• How do we manage the practicalities of engagement like payment, organisational structures and types of roles?

• How does formalising engagement change the motivation and nature of that engagement? and

•   How do we negotiate the power structures of the sector and ensure true diversity?

I have a lot of work ahead of me but in doing so I have engaged a panel of what I see are community experts. This group of people have expertise in lived experience, suicide prevention and other movements for the inclusion of people with direct experience in sectors like disabilities and HIV prevention. They will be an invaluable source of direct, lived experience to fully influence the agenda of this research. The days of people with a lived experience of suicide being disenfranchised are numbered and we are looking for that majority seat.

As a person with lived experience I am all in on this project. Before my suicide attempt I would write goal lists to try and find something to look forward to in the future. It was satisfying to cross off things I had completed and look back and see them as achievements. Some of these things were “put the washing away” or “have a shower” but others were “get pilots license” and “own a house”.

I have slowly been chipping away at the big things, now that having a shower and doing washing isn’t so hard. I have the pilot license and the house but the next big thing on my list to tackle is to get the PhD. The 18 year old Hayley would not believe that I am still ticking things off this list of things that once seemed so unachievable. So stay tuned for how the project progresses and get in touch if you want to know more about how to engage with lived experience in suicide prevention or your health research. I know a few people who could help.