Article: The value of lived experience in suicide prevention and bereavement support

In the first of our NSPA lived experience suicide prevention blogs, we hear from NSPA Lived Experience Influencer Maxine Roper about why involving people with lived experience is so important in suicide prevention and bereavement support and what a well-run lived experience programme should include.

“Lived experience involvement is far more than a nice-to-have”

All kinds of work can benefit from lived experience involvement in one way or another, but working with something as traumatic, isolating and complex as experiences related to suicide makes it far more than just a nice-to-have.

Traditionally, especially in bereavement and mental health services, the term lived experience brings to mind someone coming on at the end of a conference or an event to tell their story. Good lived experience programmes are about far more than this.

NSPA’s network of Lived Experience Influencers encourages members to actively use their lived experience and skills from all parts of their lives to create meaningful change, improving support for people affected by suicide.

As a writer, communicator and former journalist with multiple experiences of suicide loss, I joined the network to help people and organisations communicate well around suicide. Other Influencers I work alongside have similarly valuable experience in health and social care, teaching, performing arts and more.

The network includes people with a variety of experiences related to suicide, including being bereaved by suicide, living with suicidal thoughts, surviving a suicide attempt, or caring for someone with experiences of suicidality.

“Bringing people with lived experience of suicide prevention into your organisation puts you on the right path to being more understanding and inclusive”

Just as good lived experience involvement goes beyond story sharing, it’s also about recognising the value in the wide variety of people’s experiences. People impacted by suicide are more likely to have marginalised identities and overlapping needs, including being LGBTQA, disabled, neurodivergent, chronically ill or from minoritised ethnic groups.

Bringing people with lived experience of suicide prevention into your organisation puts you on the right path to being more understanding and inclusive, not just directly in relation to suicide prevention, but more widely.

Before being impacted by suicide, I was involved in lived experience work around neurodivergence, highlighting the difficulties faced by undiagnosed or late-diagnosed adults like myself in the workplace. After three experiences of suicide loss during my late twenties and early thirties, I connected the dots and realised that my unsupported dyspraxia and ADHD were a factor in why, at a relatively young age, I’d had so much contact with people who’d taken their own lives and who had problems with alcohol.

The best lived experience programmes, like NSPA’s, instinctively understand how people’s identities, experiences and needs are linked, and that people whose lives don’t neatly fit into boxes are most likely to need support to live comfortably.

“The right lived experience work can offer a safe space for people to feel heard”

Well-run lived experience programmes can also help members regain a sense of purpose they may have lost due to a traumatic bereavement or mental illness. A lived experience network shouldn’t be seen as therapy or a support group, and making sure people involved have had enough time to process their trauma is important. Equally, though, it can offer something neither of those spaces can.

I started my career as a journalist, writing about whatever was the biggest thing in my head in the moment, which led to a terrifying sense of loneliness when the biggest thing in my head was something few people understood or wanted to talk about. Lived experience work has turned that feeling into something productive and far more valuable than anything I did in my previous career. Going through difficult experiences can lead to life feeling like a constant PR exercise. The right lived experience work can offer a safe space for people to feel heard, sharing no more or less than what they feel comfortable with.

Lived experience programmes are as varied as lived experience itself, but showing that you value lived experience as an organisation comes down to the same key principles:

Knowing and being clear about what you’re looking for from participants, paying participants fairly for their time, and valuing their input into every aspect of your work.

Over the coming months, I’ll be among the influencers working with NSPA to encourage more people with lived experience to blog about the issues important to them in suicide prevention, which I look forward to reading.

About The Author

Maxine Roper joined the NSPA’s Lived Experience Network in 2020. She is the co-author of ‘Finding the Words,’ a guide to supporting someone who has been bereaved or affected by suicide, and an Ambassador for Suicide&Co, who provide accessible counselling for people bereaved by suicide. 

If you would like to learn more about NSPA’s Lived Experience Network, please contact us by emailing livedexperience@nspa.org.uk