Centring lived experience in a meaningful and impactful way?

Putting lived experience at the heart of decision-making can help charities be more relevant, credible, and better meet the needs of the people they serve. But genuine involvement requires a redistribution of decision-making power towards those who the sector seeks to help, and a big change in how charities operate.  

Most charities understand the importance of involving people with lived experience in decision-making, and there are some great examples of good practice across the sector. There is helpful guidance available, for example, Mind’s Influence and Participation Toolkit and Revolving Doors’ Service User Involvement Guide which cover things like planning for participation work, recruiting people with lived experience and running sessions with service users. 

However, we know from our conversations with charities that whilst they may do some co-design or consultation with people with lived experience in one part of their organisation, doing this in a way that embeds it across the entire organisation can remain a challenge.  

Many charities that want to meaningfully centre lived experience as part of their work are struggling to know where to start, how to resource and fund this work, and how their culture and processes should adapt. It can be hard to know what approach to take, what genuine and practical influence should look like for your organisation, and so it’s easy to feel stuck on how to move forward. This is relevant to all charities, whether they are delivering services on the frontline, or providing crucial infrastructure support. 

What NPC and other charities are doing   

At the same time, there is much to learn from the charities that are already doing this and learning as they go.  

With a generous contribution towards the costs of this project from City Bridge Trust, NPC has been collaborating with several charities of different sizes who are committed to meaningfully centring lived experience. Together, we are exploring questions such as how to combine lived experience with ‘learned’ or ‘professional’ experience in governance and strategy development; how to resource and manage involvement work at an organisation-wide level; and what key principles and practicalities are important to ensure it is prioritised in decision making. By speaking to a range of people in each charity—from experts by experience, to trustees and staff, we are hoping to learn from these different perspectives and understand how to best make it work, and how to avoid it becoming tokenistic.  

As well as holding interviews with staff and people with lived experience connected to our Research Partners, we are planning to explore some of our findings alongside them too. The outputs of this work will be shared across the sector later this year. We hope that this work will provide structured and practical guidance for charities at the start of their journey using this approach—including what key decisions to take and who to involve—so they can set up their organisations to effectively centre lived experience. 

NPC talks to many charities about how lived experience can influence what they do, but there are so many other people and organisations who are experts in this field that we want to listen to and learn from. So, we are thrilled to be guided by a fantastic Steering Group with lived and learned experience in this area: Angela Newton, Chair of NSUN and Founder of Lived Experience Matters; António Ferreira, a mental health activist, campaigner and public speaker; Bec Hanley, Facilitator of the Shared Learning Group on Involvement, David Ford, Founder and CEO of Expert Link, and Josh Harsant, Head of Voice and Influence at Barnardo’s. 

And we are open to hearing what others have to say! If you are interested in this research, please do get in touch with Charlotte.Lamb@thinkNPC.org or Daniel.Seifu@thinkNPC.org.