Lived experience & the third sector: how do we navigate a work in progress?

How do we help expert citizens navigate unfamiliar systems and ensure there are opportunities for them to practice in a mainstream context? Our CEO, Dawn Austwick, says at the heart of civil society must be a focus, first and foremost, on how to best serve the people our organisations were set up to support.

One of the biggest influencers on the subject of lived experience has been the work of UK human rights lawyer and social purpose organisations adviser, Baljeet Sandhu.

In July 2017, I spoke at the launch of her report The Value of Lived Experience in Social Change, which discusses how civil society has treated people with lived experience “primarily as service-users and informants, rather than drivers or leaders of change”.

Baljeet opened my eyes to the fact that we were, and all still are, at different stages of a transformative journey. There are a growing number of inspiring examples, which show the commitment and intent of colleagues to work closely with people with lived experience, even if the application is still a little tricky.

Stoke’s Expert Citizens Insight Awards, celebrates and demonstrates the great practice already out there. I was lucky enough to attend their awards ceremony at the Town Hall a couple of years ago and it was an inspiring occasion with the contribution of pioneers being rightly recognised.

The National Lottery Community Fund’s Strategic Framework, People in the Lead, believes that with people in the lead communities thrive, and we’ve worked hard to think about how we reflect lived experience in our approach.

We’re still very much on a learning journey, but we’ve made a good start with our fledgling Leaders with Lived Experience programme. It’s aimed at enabling those with first-hand experience of a social issue to be part of decisions that seek to create positive change for, and with, others who have also had those experiences. We have run one funding round (for which we were vastly oversubscribed) and in designing our decision-making, we have tried to be open and inclusive.

People that live within a community, particularly those who have personal experience of a certain issue and the language of that issue, understand what’s needed there better than anyone else. Part of what we do as a funder is to ensure that their voices are at the table when decisions are made.

That approach is something we’ve also strived to mirror in our Fulfilling Lives programme, a £112 million investment over eight years to support people experiencing multiple and complex needs. We've established an independent National Expert Citizens Group to bring together people with first-hand experience of multiple and complex needs and the language of that field.

These expert citizens are using their knowledge and experiences to improve the design and delivery of services and policy decisions alongside local leaders and decision makers. They’ve so far spoken with many Central Government departments, as well as local authorities and practitioners, to help develop their thinking.

With Fulfilling Lives, and our other strategic initiatives, expert citizens are heavily involved in the delivery of the programme and wider systems change. Opportunity Nottingham, for example, created a ‘pledge’ for organisations to commit to, reducing stigma and creating more effective outcomes for people experiencing multiple and complex needs.

The big challenge is, how do we find more mechanisms and move faster in building the confidence and capacity of people with lived experience to become drivers of change, and how do we recognise when we should step back?

How do we help expert citizens navigate systems that can be quite hostile and unfamiliar and ensure there are opportunities for them to practice in a mainstream context? And in so doing, how do we change the mainstream to reflect wider voice and expertise? And, crucially, how do we find an effective way for us all to move forwards together and share learnings?

In her report’s Executive Summary, Baljeet advises: “A fundamental shift is needed in both leadership and organisational development across the sector... for all our communities to join us and become agents and leaders of change.”

We don’t have all the answers, but at the heart of civil society must be a commitment to mission and a relentless focus on how to best serve the people our organisations were established to support, first and foremost. This is at the heart of generous leadership, a key element of our People in the Lead strategy, which is, at its core, about working together to achieve more.

Most importantly, we must acknowledge the expertise of those with lived experience and, at all times, remember - we are merely the curators, not the artists.