Our position on lived experience roles in mental health care

21 December 2022

Recently, the media has put a spotlight on the role of lived experience in mental health care. Here, our colleague Sam sets out what lived experience roles consist of, why they're important, and how this specialism can support the improvement of healthcare services for people severely affected by mental illness.

Sam Holmes, Head of Co-production Practice, Rethink Mental Illness

At a time when every penny of funding counts, it is perhaps unsurprising that new roles in our health service have been met with suspicion, their value questioned. We saw this recently when media commentators picked up on the appointment of new Lived Experience Directors in the NHS. It’s certainly generated a lot of conversation, but it appears some critics have missed the opportunity to truly listen to why co-production is so important and understand how investment in these roles can unlock huge improvements in both physical and mental health services to transform quality and experience of care – and therefore improve individual outcomes.

Co-production isn’t a new practice, but in recent years it’s become more integral to the development of mental health services. It means the system working in partnership with people who are intentionally bringing the real-life, viscerally-felt ‘lived’ experience of mental illness (including as a carer and/or family member) strategically into the commissioning, design, delivery and evaluation of services. It organises a wide range of people’s lived expertise, views and ideas in the drive to improve services, so that they better meet people’s needs.

A key tenet of co-production is listening to what people need and think will improve things in the future, not telling them or assuming services know best. So often, people living with mental illness tell us how they feel ignored when they try to articulate what they need, which can prove so detrimental to their recovery. If you try to put yourself in the shoes of someone feeling the distress, trauma and isolation that so many people severely affected by mental illness experience, you can start to appreciate how feeling heard and listened to is a seismic shift in how people are treated, and how positive they feel about the prospect of recovery. Lived experience has a role to play in the drive to improve patient safety, which is critical in the wake of recent exposés highlighting serious failings in mental health services such as Edenfield.

We must also be clear that these roles are not being created to tackle ‘invented problems’ – there are significant systemic issues in mental health care that can be improved with collective insights and recommendations from a wide range of lived expertise.

But crucial to all of this is the understanding that co-production is not an easy task. It’s more than a listening exercise, or a nice to have. It requires experts by experience who also have a high level of technical competence to help everyone involved to feel comfortable in the process. They need to ask the right questions, frame the information they hear, know where to focus resource efficiently and understand how that can all come together to become concrete actions that become the catalyst for change. It requires a strategic approach and highly skilled leaders who can help insights and recommendations from lived expertise flow into the system to fundamentally improve mental health services for the people that need them. This is why it is vital to the future of mental health care and a clear priority for our organisation too, as we aim to deliver on our commitment to improve the lives of everyone severely affected by mental illness.