My frustrations with the concept of lived experience begin with the limitations of the term itself: lived. In past tense, the label does not account for ongoing experiences: living experiences of mental ill-health, distress or trauma, living experiences of services that aim to – or fail to – support the people they serve. Couching it in the past tense can put pressure on people to be “better”, and in the context of co-production and involvement within mental health services, it could exclude and invalidate the views of people who haven’t “recovered” from whatever brought them to the service in the first place.
Sharing living experience wisdom often comes at a personal cost. It can be exhausting to have to tell your story over and over again only to see very little change. It can feel extractive to stand in front of a room full of clinical professionals and bear your soul, only for them to performatively tick the lived experience box before continuing with their existing plans. The experience can leave you feeling raw, vulnerable and even retraumatised. All too often, support – both before and after involvement – is neglected. Just the offer of a conversation after sharing your experiences can go a long way towards minimising the harm that comes from repeatedly retelling your story. It is worth acknowledging at this point that this isn’t always the case. There are brilliant examples of services truly listening to the voices of lived and living experience, but tokenistic and harmful attempts at involvement still happen too often.
A lot of the time, the living experience input is presented as somehow inferior to professionalised views. The “we know best” mentality of many mental health services – rooted in the prevalence of the paternalistic medical model – invalidates living experience and demotes it beneath knowledge learnt in a lecture hall or on a ward. This oversight at best patronises those brave enough to share their experiences in a public forum, and at worst, dismisses and diminishes the essential contribution made, and the benefits of its wisdom.
It is also diminishing for the individuals who are sharing their experience to receive no renumeration for their time, as is so often the accepted way. Paying individuals with living experience for their time and expertise sends a clear, positive message: your views are valued and respected, we acknowledge the work involved. Renumeration helps to redress the power imbalance in the room, yet even this small step towards properly valuing involvement is often not taken.
Very often, living experience involvement is an afterthought; people with living experience are “brought in” at the very end of a project, when decisions have already been made. This effectively commodifies living experience, weaponising the term to “rubber stamp” the plans in place, rather than to truly influence the design of the service. This further erodes the value of the wisdom of living experience and the energy people have to keep telling their story. To add meaningful value, living experience should be sought as early as possible in the design or development stage of a project, thus allowing plans to flexibly adapt, feedback to be taken into genuine account, clear communication, and respect and support to be provided throughout.
So, what do I want? I want to see limitless living experience involvement. I want to see services involve living experience – including current services users – throughout every stage of work. I want services to consider who they are hearing from and who they are not, who has the loudest voice and who is never heard. I want to see the breadth of people involved expand to ensure all our communities can share their living experience regardless of their identity or diagnoses. I want to see individuals involved in sharing their experiences properly supported and renumerated for their time.
I want to see living experience wisdom considered an essential, diverse and meaningful source of knowledge. I want living experience to take its rightful place as an equal and valued partner in the mental health system. I want living experience to lead the way in making the lives of those with experience of mental ill-health, distress or trauma better.
The Limitations of Lived Experience
This blog is part of our “The Limitations of Lived Experience” series which was open for submissions from NSUN members in January 2025 and published from February 2025. All the blogs in the series are available here.