How is lived experience engaged in your organisation?

For my research for this article, I spoke to two organisations that are either designed around people who’ve experienced a particular social issue so that I could uncover models of engagement that might be useful for other organisations.

Expert Citizens was founded from the notion that to create systems change and improve services, people with relevant experience need to be at the centre. The organisation advocates for people with experience of issues to be at the centre of service design.

The term Expert Citizens came about because we are experts within our own lives. To get systems to change and to improve services for people, you really need to involve people like ourselves who are doing this. We have an instant empathy. We can strip away and talk in a language and really build relationships where commissioners or local authority leaders cannot do or will not do. We're happy to go where people are the most comfortable and not expecting people to come to a city hall or a building where they're often not invited anyway.

Darren Murinas, Founder, Expert Citizens.

I also spoke to the campaigning organisation, The Voice of Domestic Workers, which was founded by Marissa Begonia, a former domestic worker herself. She told me that she realised that by working together and sitting down together and understanding each other, her campaign could have a bigger voice and this was what led her to organise with the purpose of helping out her fellow domestic workers. This led to the formation of the organisation which is now a registered charity providing advocacy and support.

They don't have that kind of courage. I think the way we will work in The Voice of Domestic Workers is empowering them and educating them.

Lived experience was there at its inception and remains at the heart of the organisation’s purpose. This is visible throughout its communications:

As well as speaking out for our rights we also solve each other’s practical problems. We find each other emergency accommodation and pool our resources to provide food and clothing. Together we search for ways to overcome our isolation and vulnerability and demand respect as workers, as contributors to the British economy and society, and as human beings.

The Sheila McKechnie Foundation work on the Social Change Grid looking at different forms of power within change-making is useful too.

Civil society adds enormous value to the influence we can wield individually. It is uniquely positioned to take a long-term view. It is able to look at the experiences of many individuals and spot patterns and emerging needs. It is able to support people who otherwise struggle to make their voice heard. It also finds ways to advocate authentically for those who are unable to advocate for themselves, such as young children or people in other ways vulnerable.

Social Power report, Sheila McKechnie Foundation June 2018

I also talked to Paula Harriott who’s working on centring personal experience of the criminal justice system in expertise for policy development. She created the Prisoner Policy Network in 2018 which now has 1000 active members. The Network is focused on building prisoner leadership and has published numerous reports, a ARIAS nominated podcast The Secret Life of Prisons and created opportunities for prisoners and serving prisoners to be published in books as well as co-authoring research pieces and contributing to policy development.

Within the Prison Reform Trust, 40% of the staff are people with convictions including the senior management team and board of trustees. This shapes the culture as this first-hand experience of the criminal justice system is completely integrated within the organisation at all levels.

This page was last reviewed for accuracy on 13 April 2021