Where next for "Lived Experience"

About ten years ago, I did some research on the offer rate between universities and people who had been in care. With all the caveats that research comes with, I was able to establish that the offer rate for people who had been in care was lower than the national average. That included conditional offers. 

What I didn’t establish was why that was the case. Lots of my work after that was about understanding the barriers that people faced - there were tonnes. Some specific to individuals, some interconnected and some baked in to institutions who were making themselves inaccessible.  

I had been a children’s panel member for four years, so I understood some of the behaviours that led to these barriers too. Forms that asked young people if they were at school or college, but didn’t have university as an option to choose. Caregivers who steered young people towards entry level qualifications despite their achievements and potential. And practices that left young people in a poor quality flat, on their own, fending for themselves.

The lack of a guarantor when taking out a student loan was another. A guarantor is someone who agrees to step in if you miss repayments on your loan - for most people, that’s a process that their mum or dad take care of. For people I knew, a guarantor was not only impossible to find, the question brought up lots of difficult feelings about who was with them in their life. This part of the application is where some people stopped and decided that higher education wasn’t for them.

Papers had been written about this problem. Meetings had been called to discuss it. And yet nothing changed it.

So we tried something new. 

We invited the (then) chief executive of SAAS to help some care experienced applicants complete their forms. And when it came to that question about the guarantor, he was part of the conversation where the young people went through the difficult relationships in their life;  the reasons that they couldn’t contact the people who would usually be a guarantor and how it felt to be pulled into this space by a question on a form. The need for care experienced people to have a guarantor was gone by the time the next academic year came around. Just like that.

With all that said, I think there is immeasurable value in people who experience the thing talking to the people in power who determine how the thing works. In my experience it’s where life-changing stuff happens. 

I’ve noticed (and been part of) an immense move towards the involvement of lived experience in so many different ways. Jobs where coming into an organisation and sharing lived experience is part of the criteria. Programmes of work that bring together a group of people with lived experience and gather views in an organised and constructed manner. Interview panels for top jobs that include someone with lived experience of services. Boards that seek out people with lived experience to govern the organisation. Government events that involve hearing from people directly about their experiences.

Perhaps what hasn’t come as quickly as the activity is the reflective and developmental space to examine and refine all of the practice that happens in this area. How are people who started their journey with a focus on their lived experience doing now? How are organisations holding themselves to account for doing something about what they’ve already heard? Where can we show, clearly, that people sharing their difficult experiences has made the difference that they were told it would?

In a report published to understand the progress, successes and challenges local authorities experience as they undertake work to keep The Promise, COSLA and the Improvement Service said:

“There is a clear desire to use voice of lived experience to improve services, but having the capacity and the knowledge of ‘how to’ do so is a real challenge.” (p.10)

And in research published in October 2022, Alliance and The Democratic Society said:

“There is a gap in knowledge on the external impact of involving people with lived experience.” (p.45)

Last month, I facilitated a workshop on lived experience and it was as challenging as it was insightful. You can read the note from that workshop here.

I’m left questioning whether “Lived experience” captures the range of activity, experiences and intentions that are out there in this area. And whether or not, as burn out and budgetary demands make it harder to provide the same basic standard of agreed care and support to everyone, we are comforting ourselves by creating platforms for people to tell us how we are letting them down. Even though we already know that we are. 

Given how active the policy part of Scotland’s third sector is, given the number of issue based Parliamentary Committee hearings, given the number of Government task forces/reviews - I wonder if there is enough information out there already to do what needs to be done.

Having participated in most of the above, I’m not coming at this conversation with a soap box. I’ve just completed a Masters in Person Centred Counselling and Psychotherapy and I’m curious about how we can do this work better.

All of this makes me want to do more to refine and progress the conversation on “lived experience”. I want to create more spaces to explore and tease out the different challenges and opportunities that exist, and examine some of the orthodoxy that I think has emerged around who a professional is and who someone with lived experience is. 

If you’re up for it, I’m going to hold three more conversations in the coming months. No one is funding this work so the workshops will be charged, with two places made available on a pay what you can, down to £0 basis. 

One of the workshops will focus on what we mean by “lived experience” and who we think we’re talking about. This session will be about teasing out existing assumptions and ways of doing things, then looking at them afresh. Hopefully participants will leave the workshop with a clearer sense of where their activity fits and how best to describe it. 

Another will focus on how lived experience is harnessed and heard for the purposes of improving services and changing policy. I want to bring people together to explore the ethics of that, hear about practice that already exists and consider what this should look like in the future. The idea is to name and examine some of the ethical dilemmas that this kind of work can bring, and understand how this work impacts organisations, campaign groups and their people.

And I’ll facilitate a workshop that is focused on lived experience in the workplace. I’m curious about what it means when an organisation employs people who have used their services. I wonder what resources have been given to supporting people to move through their challenges and where this fits with the wider movement on equality, diversity, inclusion and belonging. 

You can book tickets over on Eventbrite.

The workshops are participant funded - if cost is a barrier to you and you want to take part, enter the promo code HopefulSpaces and it will apply a 100% discount. If you’re part of an organisation and want my support to have your own focused and dedicated conversation on this issue, then get in touch and we can talk about how to make that happen.