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Article: Suicide prevention, past present and future: reflections from people with lived experience

An NSPA blog article for World Suicide Prevention Day 2023 by a group of people with lived experience of suicide.

This is the second in a series of reflection pieces marking World Suicide Prevention Day 2023 as part of our campaign, Reflecting on the past to drive change for the future. Here, we we share reflections and messages from some of NSPA’s incredible Lived Experience Influencers.

We believe it is vital that suicide prevention work is underpinned by the voices and expertise of people with lived experience. We recognise the huge work that many people with lived experience have done to push for change over the years. We are proud to be a part of this, by hosting a Lived Experience Network, established in 2020. Our Lived Experience Network seeks to support, facilitate and embed meaningful lived experience involvement and co-production in suicide prevention activity across the country.

There is still a way to go. We want to ensure that diverse voices of people with lived experience are truly heard at all levels in suicide prevention, and for people with lived experience to be meaningfully involved as experts in all decision making. We believe that this should be a priority in suicide prevention going forward, especially with the implementation of the Government’s new suicide prevention strategy.

The messages below include reflections from a range of perspectives, examples of different ways that people are drawing on their lived experience to influence and inform suicide prevention work, as well as calls to action about changes they would like to see for the future.

 

You can view each reflection by clicking the link below or read them all by scrolling down the page:

“My identity and experiences of suicide bereavement are not lived separately” – Penny’s reflections on being involved in research on suicide bereavement among LGBTQ+ communities

Earlier this year, I became involved in a research project, commissioned by the Support After Suicide Partnership, to better understand the nature of bereavement by suicide among LGBTQ+ communities, with a specific focus on engagement with support. You can read this report here.

It took me a long time to realise that my identity and experiences of suicide bereavement are not ‘lived separately’. It is so important that affirmative and accessible support services are available to everyone within the LGBTQ+ community.

It was important that this research was co-produced with LGBTQ+ people who had lived experience of bereavement by suicide. Members of the lived experience panel were involved in recruitment of the researchers, development of the research methodology, the ethics application, participant recruitment, and production of the final report.
We were meaningfully involved and valued at every stage of this project. I am always taken by surprise at how this makes me feel, and the positive benefits that accrue over time.
How we involve people with lived experience in suicide prevention, can make such a difference to the outcome for both the activity, and the people involved.
We must continue to consider the ‘how’, as well as the ‘what’, in everything we do. Thank you to everyone involved in this project for the golden threads of kindness and compassion that were always present.

“My willingness to talk about my experiences gave him the courage to open up about his own struggles as a suicide attempt survivor”- Dennis’ reflections on sharing his own experiences

I was attending a Living Experience Forum when a fellow participant thanked me for being an inspiration. I had openly discussed my journey as a ‘multiple suicide attempt survivor’ with confidence. He shared that my willingness to talk about my experiences gave him the courage to open up about his own struggles as a suicide attempt survivor. This unexpected impact of my words truly amazed me.
The prominence of people sharing and daring on their lived or living experiences is playing a pivotal role in combating the stigma that hinders us from seeking help.
My call to action for the next 5 years is to ensure that individuals with lived experience are represented at every decision-making table related to service provision. While they might not share their personal experiences in every meeting, it’s crucial to recognise that the profound impact of suicide shapes various aspects of their lives. Thus, their perspectives and voices deserve to be heard and heeded.

“The conversation about experiences of suicide has started but there is still a long way to go” Liz shares how she has been involved in education and training and the need to decrease stigma

I am proud to work with other people who have lived experience to make a difference in the world. As well as being an NSPA Lived Experience Influencer, I am involved with Essex NHS Trust to provide guidance and education through induction, training, talks and events.
I deliver mental health first aid training which I believe is essential to support people to recognise signs and symptoms before mental health deteriorates. In my view, early intervention and the ability to signpost to professional help is vital.
I have given talks to educate people about experiences of psychosis and perhaps not being aware or have an insight into the dangers that can be present in an episode. I also have a role that involves spending time with patients on inpatient wards within the NHS to listen and offer empathy to support their care and provide hope for their future.
Over the past 10 years, the conversation about experiences of suicide has started but there is still a long way to go. There is still stigma and people find it difficult to talk about the subject. We need to naturalise it and reduce the taboo and worry that if we say something it is going to make things worse. I am aware that more needs to happen, however things are going in the right direction to provide hope and support for the prevention of suicide.
Within the next five years, I would like there to be more awareness regarding helplines and where to signpost for support. I would like mental health awareness training to become mandatory for all employers, schools and workplaces. More education and training is needed and support for people who have also been affected by suicide.

“Hearing the direct personal experiences of suicidality is essential to reducing deaths by suicide” – Emma shares a call to action to involve a greater variety of people who have direct experience of suicidality

The changes that I have seen in suicide prevention have included:

– The development of NSPA’s lived experience network – the network is fabulous. There is still more to do to embed lived experience in suicide prevention, but this has been an absolutely fantastic start.

– There are more conversations and campaigns around suicide prevention and more visibility of the subject.

– Very slowly, there is an increase in the voices and contributions of people with experience of suicidal thoughts and attempts.

My call to action for future suicide prevention activities is for there to be even more variety of lived experience input from people like me who have survived or are surviving living with suicidal thoughts and suicide attempts. I believe that having conversations with a diverse range of people who have lived with suicidality and/or still do live with it, are key to suicide prevention. I’m certainly not dismissing carers and health professionals, and the many other people affected by suicide, I simply think and feel that hearing the direct personal experiences of suicidality is essential to reducing deaths by suicide. Don’t be scared to talk to us. NSPA can provide support and guidance as to how to best involve us safely and appropriately and I believe that together we will save more lives.

“Suicide is not a dirty word, but silence often is.” Alice reflects on the power of truthfully discussing suicidality

I was unsure if I’d made the right choice putting a reference to my suicide attempt in a performance. The show was being filmed for a documentary and was in front of an audience that included friends and colleagues I’d never discussed it with. I was being authentic (whatever that means) and it was relevant, but still… Does anyone really come to a theatre to watch someone talk about that? It turns out yes, yes, they do.. In fact one person went out of their way to thank me for saying what they were not ready to say themselves.

We all need to talk about the things that hurt, torment, and terrify us, but so many people struggle with it. I feel very proud that I helped that person take a step towards acceptance and moving on, and proud to be part of a community of passionate and supportive people who are constantly chipping away at the euphemisms and half-truths that are used to censor these powerful emotions and experiences. Suicide is not a dirty word, but silence often is. When we stifle the pain we limit the routes back to normality and hopefully joy. You have to be able to feel and express in order to heal.

“Suicide prevention IS everyone’s business. Let’s help save lives together” – Sandeep’s reflections on drawing on her multifaceted identity and lived experiences and talking about suicide prevention in the South Asian community

As a proud NSPA Lived Experience Influencer for the past 2+ years, and a Lived Experience Advocate outside of NSPA, I have felt truly humbled and honored to be part of many different projects and initiatives related to suicide prevention.

I had the pleasure of taking part in the ‘Valuing lived experience in suicide prevention’ plenary session at NSPA’s 2022 Conference. It was such a positive experience to represent being a British Sikh Asian woman with lived experience and to share my experiences from an equality, equity, diversity and inclusion as well as from a cultural, faith and multi-faceted identity point of view. Here is the recording of the session.

Through my lived/living experience of mental health, my strong attachment to my Sikhism faith has played a pivotal role in my mental health journey, so I decided to share my thoughts on the importance of my relationship between faith, mental health, and suicide prevention with the blog titled ‘Valuing the relationship between faith and suicide prevention’.

Linked to the important subject of faith and suicide prevention, myself and other fellow NSPA Influencers joined a workshop run by FaithAction to help develop their new resource for front-line workers around faith communities and suicide prevention. This work is still being developed, so watch this space!

Reflecting on the past 5 years, the biggest change for me is seeing how religious and faith groups from various ethnic communities have become more welcoming and open in beginning to talk about mental health and suicide prevention. This is a very significant change for me. I felt it very much when I had my first ever in-person public screening of a documentary film about my mental health journey at the Gurdwara in Leicester for Mental Health Awareness Week in May 2023. Extremely important and much-needed conversations were happening in this local Sikh community and the desire to broaden out and do much more on this front altogether. We still have a long way to go.

Suicide prevention IS everyone’s business. Everyone deserves to live and be in this world. We need to continue to press forward with this agenda, continue in turning big ideas and breakthrough thinking into action, action, action. Let’s keep pressing forward with teamwork and collaboration, strongly underpinned by lived experience voices and champions to help save lives, together.

“The future ambition should now be for all suicide prevention initiatives to be genuinely co-produced with those with lived experience” Andy shares examples and reflections of co-production in suicide prevention

There is never a week that goes by when I don’t reflect at some point how truly grateful I am to be alive and how fortunate I am to now be able to make various lived experience contributions that support the important cause of suicide prevention. I always feel a sense of pride to be involved in this work and it is a privilege to be able to give something back to help others.  

The knowledge and experience I have gained as an NSPA Influencer has helped support the co-production suicide prevention initiatives I have been involved with locally in Northamptonshire and the East Midlands, and I have learnt so much from working alongside others with lived experience. 

The two examples I am sharing here have been where I have utilised lived experience of severe mental illness, crisis and attempts to die by suicide through genuine co-production.  

Working with the Suicide Prevention Lead for Northamptonshire Healthcare Foundation Trust we have co-produced and co-presented a Suicide Prevention and Awareness Training Course, which centres around the importance of “asking the question”. This has resonated both within the NHS Trust and to a wide range of people working in community settings and partner organisations within the local Integrated Care System. The co-production dimension was instrumental in our recent short listing for a national patient safety award. 

 In recent months I have also had the privilege of being invited to co-produce and co-author a chapter on suicide prevention for a refresh of a mental health nursing text book. I was really pleased that my idea of a web- based series of lived experience audio files to enhance the guidance and principles of safety planning were adopted by the Editor. 

Quite rightly there has been a growing awareness of the added value which the voices of those who have personal lived experience of suicide can bring to helping the cause of suicide prevention; working in collaboration with the knowledge and skills of those who are experts by training, vocational experience or research. 

Suicide is so uniquely personal, complex and challenging that the insights and perspectives of those with lived experience are invaluable to help inform positive change to policies, interventions and the support available to those struggling with thoughts of taking their life.  

The voices of lived experience have helped challenge the stigma, myths and prejudice associated with suicide. These voices have also promoted the open conversations about suicide and self- harm so necessary to encourage a culture of awareness and support for suicide prevention in all community settings. 

The future ambition should now be for all suicide prevention initiatives to be genuinely co-produced with those with lived experience; whether that be policy, training, supportive interventions or system design and change.  

Lived experience has made, and will continue to make, important differences in suicide prevention.  

About The Authors

Thank you to all of the Influencers who contributed to this article – Penny Phillips, Dennis Baldwin, Emma Williams, Alice, Liz Rotherham, Andy Willis and Sandeep Saib.

Penny, Dennis, Liz, Emma, Alice, Sandeep and Andy are all NSPA Lived Experience Influencers. You can find out more about the NSPA’s Lived Experience Network and how you can get involved here or email us: livedexperience@nspa.org.uk.

If you are an organisation or individual working in suicide prevention you can read more about good practice when involving people with lived experience.