More than a seat at the table: Co-producing events with people with lived experience

Jennifer Pearl, a member of the National Co-production Advisory Group (NCAG), part of Think Local Act Personal (TLAP), reflects on her journey with co-production in adult social care, emphasising the importance of ensuring opportunities are genuinely inclusive and accessible for people. 

After becoming unwell, aged 47, and after many episodes in hospital, I eventually recovered to a stage when I could think about life and work again. A family member suggested I applied to become an Expert by Experience for the Care Quality Commission (CQC). I met Andrea Sutcliffe at a conference, who was the Chief Inspector for Adult Social Care for CQC at the time. She invited me to attend an NHS Conference with her and speak about the complexities of navigating adult social care. This was my first experience of co-production – a word I wasn’t familiar with back then but now, through my involvement with TLAP, it has become a large part of my life.   

It’s been great to see more people with lived experience invited to attend and participate in adult social care events, from smaller ones which focus on local issues, to large national conferences like the National Children and Adults Services Conference (NCASC). However, inviting us to be part of these sessions isn’t always as simple as it seems. The whole experience of preparing to go away to NCASC 2023 was an eye opener and a big learning curve for me.   

Holidays and work events aren’t always easy for people with health and support needs.  Most people just need to think about what clothes to take with them, but it’s not straight forward for me to go away with the level of care and equipment that I need. I need to ensure I have all my medication supplies and various extra things in case anything goes wrong. Thank goodness my husband doesn’t need much. 

My first work trip was to NCASC 2023, which was held in Bournemouth, and this took quite some persuasion. I had a lot of planning and organising to do around my care and support before I could even think about what I was contributing to the lived experience session I was delivering. I eventually found a hotel which catered for people and their families with disabilities and had the profiling bed I required.   

The next hurdle was finding a care agency that could meet my needs. My team of carers from home are not always available to go away with me and none of them can drive my car. 

All the agencies I contacted on the CQC list, that had been inspected and rated good, were not taking on any short-term work. I even contacted ones that had not been inspected at the time. Fortunately, I eventually found an agency. I then had to request funding from the continuance care team. Before I went, I needed to have my catheter changed by the district nurse, as well as additional help to pack all my medical equipment and extra items I needed to take with me.  

Following this experience, I was very keen, if possible, to attend the next NCASC 2024 in Liverpool. I searched for accessible accommodation that I knew of and posted on my Spinal Injuries forum and asked people who had connections in Liverpool but couldn’t find any accommodation with a hospital profiling bed. The only places that were suggested to me were care homes and I didn’t fancy doing that. So sadly, I could not attend the conference. 

This is just one reason why it’s so important to engage with people who have lived experience in more meaningful ways than simply inviting us to events. Involving us in planning sessions, programme design, and developing questions for high-profile speakers helps ensure we can still share our expertise, even if we can’t attend in person for a variety of reasons. 

Now, gradually through joint work and an increase in general co-production, things are improving. ADASS, LGA, TLAP and NCAG have been working together closely to try to make NCASC more inclusive. There’s now a prerequisite to have someone with lived experience on each panel for the Adult Social Care (ASC) workshops. But what I would like to see are the panellists with lived experience included at the planning stage and not just as last-minute speakers. This certainly was the case when I was involved in work force strategy workshop with the Department of Health and Social Care (DHSC) in 2023 – I really felt part of the team all along. 

And whilst there has been good progress on the number of people with lived experience invited and attending NCASC, I would really like to see personal assistant costs included in the conference expenses policy as this is a barrier to attending for lots of people.  

I am looking forward to NCASC 2025. The planning started long ago. It’s great to be involved with the team at LGA and ADASS to see what is possible and to include more people with lived experience in a meaningful way that will hopefully contribute to improving services.   

What I really want is to have more choice and control over my life, whether that’s through statutory services or emerging technologies like AI. We’re still a long way from robots being able to handle all aspects of personal care, but even small innovations, like a robotic vacuum or voice-activated blinds, help me do more for myself and give me a greater sense of independence.