Co-production brings together different personalities and experiences. An investment of time is essential. Co-production is not for people who want shortcuts and quick fixes.

This blog post is a shortened version of an article we wrote for the Tizard Learning Disability Review.

We live and work in a world of constantly shifting jargon. It’s hard to keep up with the latest buzzwords, let alone keep a clear view of older terms whose meaning gets muddy with misuse. As two leaders of a social enterprise, we’re fighting each other over which one of us is the GOAT. If you don’t know what that means, you’re not keeping up!

One of our favourite bits of jargon is ‘co-production’. It may sound like a technical term, but we love it so much it’s one of our core values. In essence, co-production for us means people with learning difficulties and/or autism, families and professionals working together as equals. It’s about collaboration and sharing power in decision-making about care and support and the design of services. 

Once a buzzword, co-production is in common currency these days. It’s a bit muddy with misuse, often used when something less is what is really taking place: consultation, involvement or engagement. But its meaning matters. When properly understood, co-production can strengthen collaborative ways of working in health and social care by offering a well-developed model or framework. We need this, because the historical models assumed professionals, and often parents, should hold decision-making power, leaving people with learning difficulties devalued and with limited possibilities for their lives. 

Co-production is a relationship of equal power-sharing from start to finish. As the comedian Laurence Clark memorably put it, “Consultation is a one night stand. Co-production is a long-term relationship”. If professionals start a piece of work on their own, then the agenda is set and plans are made using their assumptions, impoverished through lack of insight from lived experience. It will be very difficult to bring those insights fully on board part-way through. When the Camphill Village Trust made what they described as a “fundamental culture shift” to working co-productively alongside people with learning disabilities, they learned to start “with a blank agenda and just two questions: ‘Why are you here?’ and ‘What do you want to do?’”. Going into a meeting with a blank agenda is a bit like jazz improvisation. If you’re used to the safety net of playing from sheet music, jazz may be terrifying at first, but it becomes a thrilling leap of faith in yourself and the other musicians. Co-producing from the start with no agenda is also a thrilling leap of faith in the humanity and diverse expertise of people in the room: people with learning difficulties, families and professionals.

Co-production takes time. Plenty of it. Time is the most precious, but most threatened, resource in care and support for people with learning difficulties. The underfunding of public services eats away at time, as does a market-driven culture in which productivity - getting more done with less time - is king. To be honest, we struggle with this here in bemix. It’s tough and counter-cultural, but professionals must insist on the time and space that enables people with learning difficulties to take their full, equal place at the table as experts by lived experience. 

Co-production values different kinds of expertise as complementary and equally important. Lived experience of having learning difficulties, when attuned to what this also means for others, is rightly called expertise. By definition, it can’t be attained by people without learning difficulties, no matter the depth of their professional experience. At the same time, professionals develop expertise, especially in managing complexity, which is unattainable for people with learning difficulties. 

Co-production enriches the lives of everyone taking part. Pay can be an important part of this. If professionals are rewarded with pay, then people with learning difficulties drawing on their expertise to represent others should also be paid fairly. But, as with all worthwhile work, the benefits to everyone involved extend much wider then pay.

Health and social care systems easily lead professionals to view people in terms of diagnoses, risks and behaviours. The influence can be subtle over time, clouding the perspectives of the most vocational, humane people. There is no better antidote than to work co-productively. Professionals approaching co-productive work with open hearts and minds come away with a deeper sense of what it means to live with learning difficulties and the humanity of their work re-centred. This is especially crucial in large, complex organisations in which professionals risk being detached from the people they make decisions about.

Matt, Chief Executive at bemix, shares from personal experience:

“My first encounter with Skillnet (now bemix) was at my job interview. It had been 15 years since I last applied for a job - I was nervous. I was kept waiting, which made things worse. I later realised the delay was caused by the need to work at the pace of two panellists with learning difficulties. When I entered the room, it was the warm humour of one of the two, together with the painstakingly long time it took them to ask questions, that helped me relax, open up and be myself. Once in the job, I learned their feedback on how I responded to and treated them was central to the decision to recruit me. I’ve come to realise just how much co-productive interviews - which reduce intimidation and are sensitive to applicants’ values - help us recruit so effectively.”

Co-production entrusts people with learning difficulties with responsibility for themselves and others. Take a moment to think about that sentence. It’s simple to read, but revolutionary. How often is the idea of taking on ‘responsibility for themselves and others’ associated with people with learning difficulties? Rarely, if ever? But if we consider the responsibilities we value - in our work, family life and friendships - we sense profoundly they make us who we are. Responsibility for oneself and others is foundational to our maturity and sense of meaning and purpose. And yet huge structures of care and support are built around people with learning difficulties without this foundation ever being laid. 

Even small responsibilities bring out the best in people. A favourite memory of ours is of a meeting in a secure mental health unit where an inpatient described with emotion how aggressive he’d been when first admitted. He described how, over time and with good support, he calmed down and regained perspective. Then, straightening his back, he spoke with pride in his voice: “Now I’m a patient rep.” Just a touch of responsibility was bringing out the best in him, helping his recovery. 

Steve, Co-Chair of the bemix Board of Directors, shares from personal experience:

“On my first day at Skillnet (now bemix), I just thought I’d be doing courses for evermore. But Jo Kidd, one of Skillnet’s co-founders, saw me talking a lot about different things, and asked if I could help on a project with the Department of Health. At that time, co-production wasn’t a word. It was just me and Jo working together. Jo saw I could become confident speaking up in big meetings, and thought I should have a chance. Chris Dillon, co-founder of the self-advocacy group Voice4Kent, also believed in me. Because I was treated like this, I feel confident speaking up. I’m supporting other people now, with and without a learning difficulty, so I can support them to be who they want to be.”

As leaders, our task is to organise the company so responsibility is distributed in line with people’s capacity to take it on. We run projects focused on performing arts, upcycling waste material, catering and campaigning among other themes. Some are trading as local social enterprises. Each morning, people meet to plan the day. Up to twelve adults with learning difficulties will be in the room, sometimes with one in a paid supporting role. Responsibilities such as counting money, buying and serving refreshments, health and safety and fire safety are assigned on a rotating basis. Setting up, tidying and cleaning are a team effort. Big decisions about the project are made collectively.

Lis and Sarah, experienced bemix employees who support in these projects, share that enabling co-production is not easy. “People often come with expectations that things will be done for them, which is what they know from school or day centres. Paying for our service can add to that expectation. And we’re naturally caring. When you work alongside someone very vulnerable, it’s easy to just do things for them, and not see the adult inside.” Sam, a professional actor with Down’s Syndrome and on our payroll as a Performing Arts Supporter, adds: “I was very shy and wanted a lot of help when I started, but I got support to become independent. Now I find that people are happier supporting each other if they are supported by someone like me.”

The protective, caring instinct can mean people with learning difficulties are brought up with no expectation they can take on any responsibility for themselves, let alone others. While this springs from kindness, its outcomes can be cruel and limiting. Accepting well-meant help becomes learned behaviour, consigning the person to a lifetime of dependency. Co-production disrupts this by reimagining people with learning difficulties as contributors with power to act in the world - in other words, as true adults. Co-production recognises that shouldering the burden of responsibility is at the heart of human growth. The scope for this, when adults are vulnerable and have complex support needs, may appear very limited. But recognition of the essential dignity and adulthood of the person means the extent to which responsibility can be shouldered should be continually explored and enlarged, even if this enlargement is slow and incremental.

This brings us back to time, or perhaps we should say the gift of time. Steve recalls: “Jo and Chris took the time to really understand me, and see what I can do.” The gift of time given to understanding Steve is what produced belief in him, enabling the sharing of power and responsibility in the work they did together, leading to Steve’s growth as a person.

Because co-production brings together such different personalities and experiences, a deep investment of time is essential. Co-production is not for people who want shortcuts and quick fixes. The gift of time given to others - to listen, to understand, so as to believe in them - will pay dividends far greater than the investment put in. 

As a company, we’re all about co-production but still fall short. We get it wrong with time, accessibility, and with genuinely equal power-sharing. We learn, and aim to do better. But we’ve experienced the wonderful impact as people have risen up to make their own choices, control their lives, advocate for others and take the lead. If you want the same where you work, you can go for it too! Make time, invite everyone in, clear the agenda, and take the thrilling leap of faith in people.

Written by 
Steve Chapman and Matt Clifton (pictured)