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Using the voice of lived experience to shape effective system change: Charlotte’s journey with the National Expert Citizens Group (NECG)

The National Expert Citizens Group (NECG) is a group for people experiencing multiple disadvantage – a combination of health and social needs such as poverty, homelessness, involvement with the criminal justice system, mental-ill health, neurodiversity, discrimination or substance misuse.

Facilitated by Revolving Doors, the NECG is part of the Changing Futures programme, a £91.8 million joint funded initiative between Government and The National Lottery Community Fund, the largest community funder in the UK. The programme funds local organisations working in partnership to better support those who experience multiple disadvantage.

This week, the NECG is showcasing groundbreaking work to tackle the four strategic priorities it set in 2022: dual diagnosis, housing and homelessness, the justice system and (neuro)diversity. As part of this, NECG members are sharing their own stories: real-life examples of the power of co-production to change lives and shape solutions. This is Charlotte’s story:

When you have been through the broken systems that we have, facing so many closed doors, it takes time and some very special people to enable and develop the trusting relationships between members that make meetings of the National Expert Citizens Group such a hive of ideas, solutions and creative thought.

The NECG and Revolving Doors have facilitated a national dynamic force that is seldom silent or lost for words. We are always ready to help any organisation focus on reshaping their service or system, finding answers to questions and problems where others have failed. We have created a unity that is far less common in other groups, and I am proud to be a part of it.

Where else would you get an informed national perspective on all aspects of multiple disadvantage? The National Expert Citizens Group is what it says on the tin: we are experts because we have lived through it all and can give you an informed account of what doesn’t work, what does work – and why. By using our collective expertise, you can change the way you commission, shape and deliver services to facilitate positive and sustainable change.

A journey into confidence and recovery

My first meeting of the NECG was in 2019 in Bristol. I was a beneficiary of Fulfilling Lives and relatively early on in my recovery. Travelling out of London felt overwhelming, let alone the thought of being in a room with so many people. In those early days I really needed support just to engage.

Over the next year or so, prior to lockdown, I attended National Meetings in Blackpool and Manchester with my fellow rep from South London and our support worker, the Lived Experience Lead. I enjoyed visiting different cities and meeting everyone from all over the country. By now the group was cohesive and we were happy to see each other’s familiar faces as we met up for dinner the night before. I remember that everyone was so full of life and enthusiastic – we were the noisiest lot in the restaurant!

In that second meeting in Blackpool, the NECG set about formulating our first set of strategic priories. We wrote on Post-Its about the broken systems in our regional areas, and themes across England started to emerge.

We have always stuck to those priorities, which have developed alongside us. We have used the national collective voice of lived experience to show that the siloed archaic systems of working are simply not helping the people that need it the most.

I can remember the crippling anxiety I used to feel in these initial meetings at the thought of speaking in such a large space. I can also remember how those nerves would then evaporate as it became clear I was in a room full of people who had gone through very similar experiences to me and therefore understood me. We were there to work towards the same goal: affecting positive system change for everyone still suffering across the country.

Over time I found the confidence to get more involved. I was filled with fear at the beginning but was gently encouraged and started by co-presenting slides at meetings. This has helped tremendously in my personal life as well.

Now, I am studying to become a lawyer following a Masters degree. My experiences of speaking and presenting at NECG meetings have really helped my confidence with public speaking. I no longer quake with nerves when I want to ask questions in a packed lecture theatre or get muddled and confused when presenting online or offline.

With the NECG I have gone on to present on coproduction, using the voice of lived experience to shape effective system change and service design and delivery. We have been involved in informing government departments on why coproduction is essential to reach more people and keep them engaged. I’ve been to corporate offices and talked to heads of international companies so they can see that coproduction is the way forward, and that those with lived experience are not risky or difficult to work with.

I cannot stress how much my involvement in the NECG has facilitated my recovery.

As time has gone on for me personally, I no longer need or want to be in meetings talking about how to stay clean and sober. What I do need is to be with people that instinctively understand where I have come from and the experiences that I have had, and how these have affected me in my everyday life. The NECG gives me that and so much more.

What does the future look like for the NECG?

How amazing it is to be in a room of people who are generously giving up their time, their personal stories and sometimes it seems parts of their soul, to make things better for those still suffering out there.

How wonderful it is that I can log on to a meeting when I’ve had a bad night or am not having a great day and instantly be taken out of my own feelings by the collective passion and drive to find solutions and a better way forward for those who are suffering as we once did through outdated services and practice.

How brilliant that I can be my true authentic self and not have to hide parts of my life or experiences.

Where else do you find a group of people that come together from all over the country with such a broad range of knowledge and experience that respect each other deeply, are authentically compassionate towards each other, and all focused on what needs to change?

The NECG is such an important and unique group where the national collective voice of lived experience meets regularly. We can give the personal, regional, and national view on any issue related to any of the elements of multiple disadvantage, and help our understanding of unmet needs evolve – for example, since I started it has changed to include domestic abuse and neurodiversity.

We have a plethora of experience, with members openly identifying with many different intersections of needs that make up ‘multiple disadvantage’.

Having lived through the barriers and obstacles that this can present in relation to recovery and simply living in society, we are now in a unique position to offer an informed view on the ways in which things need to change and why.