What inspires us most about the charities we work with

The brilliant charities we work with inspire us in countless ways. But one of the most significant is their role in ensuring people with lived experience are at the heart of policy making and service delivery. We have numerous examples we could draw on, but have chosen the following three to highlight.

We Belong, who we have worked with since 2019 (and since 2017 in their previous guise as Let Us Learn), is a charity with lived experience at its very core. We Belong was set up and is run by young migrants who arrived in the UK at a young age and have spent almost all their lives in this country. In 2022, We Belong achieved a huge campaign victory when the Home Office agreed to halve the length of time – and financial cost – it takes for those who came to the UK as children to be recognised as permanently ‘settled’ here. The policy change means thousands of young people growing up in the UK can apply for permanent settlement after five years of ‘limited leave to remain’, rather than waiting at least a decade.

As outlined in We Belong’s evaluation report on this campaign success, a key factor was building the organisation and campaign around lived experience. As they noted, there are examples of campaigns where the involvement of people with lived experience is shallow and tokenistic, yet We Belong “turns that model on its head. As a young-migrant-led organisation, every key decision at every stage, is made by those with lived experience (who can tell their own stories, if they so wish); and who can bring in external expertise (say, comms or public affairs support), when they decide it would be useful”. This approach, they wrote, “is more impactful on the audience and empowering for the young person.”

The VOICES Network, who we have had chance to work with as part of our support for the British Red Cross, are another inspiring organisation built on lived experience. A collective of refugees and people seeking asylum, the VOICES Network works to ensure those who are experts by experience in the asylum system influence policy and practice.

We supported the VOICES Network and British Red Cross with organising and hosting a drop-in event in the UK Parliament in 2022. It was notable how engaged MPs were by hearing directly from those who had personal experience of the asylum system and could provide insight into the human impact of policy made by those far removed from the system in Westminster.

Finally, The Hepatitis C Trust, who we have worked with since 2005, has had a transformative impact on the lives of some of the most marginalised people in society through its ‘peer-to-peer support’ programme. This peer work involves people with lived experience of hepatitis C utilising their own experience to raise awareness and provide education to those at risk of contracting the virus, assist people to get tested (and test them directly), and support people through the treatment process.

Those most likely to contract hepatitis C include people who inject drugs (or have done so in the past), homeless people and people in prison. Such individuals are more likely to have had previous negative experiences with authority figures and may therefore be less likely to engage with the traditional healthcare system.

By referring to their own past experience of injecting drug use, homelessness and/or the criminal justice system, The Hepatitis C Trust’s peers are often able to get past these barriers and support people to access the healthcare they need. Research by NHS England has demonstrated the effectiveness of the programme, finding that participants approached through outreach services were two-and-a-half times more likely to engage with healthcare systems around hepatitis C if they were in a peer support group, and that there was a 12% increase in people starting hepatitis C treatment if they had contact with a peer.

We’re privileged to work closely with such inspiring organisations, whose work ensures policy and services are shaped and delivered by those with lived experience.