If you’re a lived experience worker who feels isolated in their work, unsure of what their work actually is or find your work a bit of a roller coaster of exciting successes and bitter disappointments, you might be surprised to find that this is probably a lot more common than you think.
We get to talk with lived experience workers (paid, volunteers, artists, activists, employed, self-employed, non-employed, by choice, by default and all the other ways lived experience ‘work’ might materialise), and often similar things come up: the same rocky roads into lived experience work plagued by falls, failures, and heartbreaks when things aren’t as easy as they’re sold to be by employers. Some of us are very action-focused and really want to drive change, and some of us are very thoughtful and more measured in our approach. Some use art, activism, impact, and creativity, others are negotiators, mediators and hold spaces for dialogue and conversations.
And many are all of these things. And most of us, at what time or another, bump into another lived experience worker and connect deeply over the trials and tribulations of this profoundly challenging field of work.
A Community Space for Lived Experience Workers
At Peer Hub, we are always looking for ways to connect lived experience workers with each other so that we get more opportunities to learn from each other, grow our confidence and build our body of knowledge and practice. One way we are doing this is through creating our Lived Experience Workers Online Community, where people across the UK can collaborate, network, and access our online peer support groups.
Our online community was founded by Peer Hub's Vikki Price, as she knows that there is so much knowledge and expertise in Lived Experience work, yet it is often very separate and disparate. It’s challenging to find a place where lived experience workers can ask questions of each other and share ideas.
“A lot of the stuff around lived experience, survival, and user knowledge, is all over the place. There's different resources in different places, and I wanted to create something where there was a central focus point where people could come together, talk about their work and get some support for their work.”
Along with the focus on lived experience and survival knowledge, Peer Hub also created the online community for people who aren't necessarily interested in creating a career around lived experience but want to use their experiences intentionally as part of art, activism or within their community. It felt very much that a community like this was needed, particularly as people were becoming more isolated during the COVID-19 pandemic.
When forming our community, it was essential for lived experience workers and survivors to have ownership of the space as Peer hub’s Vikki explains:
“I’d like the community to be owned and developed by people with lived experience, rather than being done for us. There's an awful lot of people out there, particularly non-lived experience professionals in leadership roles, who – with all the best of intentions – have tried to help us do this. However, that then can become quite paternalistic and doesn’t draw from our community knowledge and experience, but professional knowledge and experience. We saw this, for example, with the development of the HEE Peer Support Competency Framework and associated curriculum and training.
So, one of the reasons for the Lived Experience Workers Online Community was for us to be able to take back the leadership and development of our own work and be able to think about our own standards, our own values and our own knowledge as a potential professional field that is emerging from within a community.”
As well as connecting with other lived experience workers who have similar experiences of the workplace, there are many other opportunities when joining our community.
“I think the opportunities are really whatever we want to make them. I would love to see people take the opportunity to create a professional identity for ourselves, for those of us who want to work professionally, and that's not to say that everybody in the online community needs to be thinking professionally. I would also love to see that people don't feel as isolated and alone in this field of work. Whether people join the community as grassroots activists trying to create radical change, or in statutory systems trying to improve care, I would hope we all have something to offer each other from the way we’ve learned how to ‘work’, and – just as importantly – how not to.”
Some of the other opportunities that our online community can provide are discussions around our identity as lived experience workers in different spaces and collaborating together to create working environments that work for us. This might include finding a common way of explaining or describing our work that helps us align ourselves with other forms of lived experience work, or thinking about what we call ourselves and our job titles. An area that comes up often in conversations about lived experience work is parity of pay, status, and respect with other professional groups, and how we collectively might ask for better working conditions.
“One of the things that I think really shines through from lived experience work is how skilled we are and how much knowledge and heart we bring to our work. So I would hope that there's an opportunity in the community for us to be collaborative in raising our own expectations of our working environment and the value others hold for our work. For people working informal roles, this might mean we get the chance to create some of our own standards and our own expectations of how we should be treated as workers.
“Equally, for artists and creators, this might mean we feel more confident about putting our work out there to be seen. And for activists and campaigners, connecting with other movements through the community to share knowledge and stories that are buried deep in excluded groups, but are vital for change across society. Connection, learning together, and growing the confidence and voice of the work we do is something I’d really love Peer Hub to be able to facilitate for our communities.”
As we are still a relatively new online community, we hope to grow our community over time. Things are just really getting started, and it's a good time to shape what we want and need from it. So whether you are a full-time peer support worker, volunteer occasionally, or engaging with lived experience work on a grassroots level (and everything in between!), we would love you to become a part of our community and grow with us.
To join, please click here, where you can create an account and become a part of our online community.