Beyond Box-Ticking: Amy Gould on Meaningful Co-Production in Transforming Care

PSG: Hi Amy, thank you for joining us today. To start, could you tell us a little about your background and your involvement in Transforming Care?

Amy: Of course. I’ve been an Expert by Experience with the Nottingham and Nottinghamshire Integrated Care Board since 2021. My journey into this role started with personal experience. My youngest son, Nathan, has a rare genetic disorder, autism, and moderate to severe learning disabilities. Over the years, we’ve faced countless challenges navigating support systems, and I felt compelled to share our experiences to help improve services for others.

Our family’s situation gives me a unique perspective on the gaps in support systems and the importance of holistic and person-centred approaches.

PSG: How would you describe co-production, and why is it so important in Transforming Care?

Amy: For me, co-production means working collaboratively with the individual and their network to design and deliver support. It’s about recognising that everyone – the individual, their family, and professionals – holds a vital piece of the puzzle. By bringing these perspectives together, you create a fuller picture of what’s needed for someone to thrive in life.

When co-production is done right, it ensures that decisions aren’t made for someone but with them. This is especially important for people who may not have the capacity to express their needs verbally. Their families often have invaluable insights, but all too often, their voices are dismissed or overlooked.

PSG: Could you share an example of where co-production made a difference?

Amy: One that stands out was during Nathan’s transition into supported living. Initially, professionals dismissed my concerns about environmental triggers, like his aversion to radiators on the wall. Within days, those radiators were ripped off the walls – a behaviour that could have been avoided if they had listened to me.

PSG: That’s a powerful example. What role do you think co-production plays in ensuring quality of life for people who engage in behaviours of concern?

Amy: Quality of life and behaviours of concern are deeply interconnected. When someone’s life lacks meaningful activities or they’re restricted by their environment, frustration and anxiety build up. For instance, Nathan loves being outdoors, but if his access to the garden is delayed due to maintenance or bureaucracy, his frustration manifests in behaviours of concern. It’s a vicious cycle. By addressing these environmental and systemic barriers proactively, you’re not just reducing behaviours – you’re enriching someone’s life.

PSG: What steps can professionals take to support genuine co-production?

Amy: First, they need to actively listen – not just to the individual but also to their families, and frontline staff. Each of these groups brings unique insights.

It’s also about using clear, accessible language. Technical jargon or acronyms can alienate families and make them feel inadequate when, in reality, they’ve been applying these principles intuitively for years.

Another critical step is providing opportunities for meaningful inclusion across the stages of support. For example, the individual and their families should be involved in creating Positive Behaviour Support plans.

PSG: Do you think there’s enough emphasis on involving individuals and families in decision-making?

Amy: Unfortunately, no. Some organisations excel at this, but others are still ticking boxes rather than embracing genuine collaboration. One of the biggest barriers to co-production is the assumption that people “won’t engage.” The real question is why they won’t engage. Have professionals built enough rapport? Have they considered past experiences or trauma that might be influencing their reluctance?

PSG: You’ve mentioned the power imbalance in co-production initiatives. Can you expand on that?

Amy: Absolutely. In many meetings, professionals are paid for their time, while families and Experts by Experience are expected to participate out of goodwill. This creates an inherent imbalance.

True co-production means acknowledging and respecting all contributions equally. It’s not just about paying people – though that’s important – but about creating a culture where lived experience is recognised as expertise.

PSG: What changes would you like to see to improve co-production?

Amy: I’d like to see more proactive rather than reactive approaches. This means listening to people’s experiences early and acting on them, rather than waiting for things to go wrong. It also means creating systems that prioritise quality of life as much as safety and clinical outcomes.

Finally, I’d encourage more training for professionals on the importance of co-production. Understanding the lived experiences of individuals and families should be central to any training programme.

PSG: Amy, thank you for sharing your insights. Any final thoughts?

Amy: Just that co-production isn’t a luxury – it’s essential. When we listen to individuals and their networks, we’re not just improving services – we’re improving lives. It’s all about building trust, breaking down barriers, and creating systems that truly work for everyone.