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33. What I’ve learned so far from co-producing The Victoria and Stuart Project

Written by Sarah Gibson, Research Associate, Kingston University.

Hello! I am a Research Associate at Kingston University and project co-manager for The Victoria and Stuart project (alongside Andrea Bruun). Our role is to help to oversee The Victoria and Stuart project from the beginning to the end. We work with colleagues and advisors who bring many different types of experience, knowledge and perspectives to the project.

I came to this project after 18 years as a Survivor Researcher co-producing mental health research. I have been working to improve and set standards for service user and carer involvement (PPI) in research, build teams of lived experience researchers and advisors, and put lived experience at the heart of research and service development since 2004.

So, one of the things that excites me about The Victoria and Stuart project is the opportunity to co-produce this research and the support and resources for end-of-life care planning we are developing and testing alongside …

  • colleagues with learning disabilities

  • family and friends of people with learning disabilities

  • support workers and service managers

  • palliative care doctors, nurses and professionals

  • and of course other university-based academics such as myself

We’re more than halfway through The Victoria and Stuart Project now, and I’ve been thinking, talking, and writing about co-production for years. So, unsurprisingly, this blog is about 'What I have learned so far about co-production from working on The Victoria and Stuart Project’. Here goes…

Co-production comes in many different shapes and sizes

Sometimes co-production happens in meetings, sometimes by text, WhatsApp or email, sometimes with pictures and long personal stories, sometimes with an agenda, slides and notes.

Sometimes it’s a planned process. Sometimes it is an unplanned twist coming from seeing something from a completely different perspective.

Co-production can’t be done in a measured and even way and co-production can’t be done alone!!

Co-production is a privilege

While co-leading this project, we have heard many touching personal stories about illness, discrimination, bereavement and supporting people’s end of lives and thinking about death both from our colleagues with learning disabilities and those without that honour in so many important roles.

Hearing every story and perspective is a privilege. Each bit of personal lived experience and professional knowledge learned the hard way is precious.

I am honoured to be part of a research team and project that honours these stories and honours those who trust us to share their knowledge and experience within our project coproduction spaces.

Coproduction requires respect, bravery, humility, paying attention to details, language, emotions and what is left unsaid

Each person is brave, who shares their knowledge and attempts to talk with and learn from people who have very different perspectives.

The respect and honour I have witnessed in this project's focus groups, research team meetings and co-design groups is humbling.

I have watched people listen and learn with tears in our eyes and hearts full of emotion as others have been bravely honest about the difficulties that they and their loved and supported ones have encountered and as we have considered what we can all do to support each other better.

Co-production takes lots of time, talking and ‘listening with our ears, eyes and hearts’

We have scheduled in a lot of long meetings, both face to face and online, to listen to the many different perspectives and styles of knowledge people have been brave enough to bring to The Victoria and Stuart Project's work in developing end-of-life care resources to support people with learning disabilities.

This is an important investment of time and money. However, we are also aware of the emotional investment it takes to share our views honestly, listen deeply, and reflect and learn from each other.

Co-production costs in many ways but the results are our treasure!

Co-production makes a difference

If we come out of a co-production process, meeting or encounter thinking the same way as we went in, we are very unlikely to have been part of co-producing anything.

The very point of co-production is to make sure that many different and sometime lesser heard voices, types of knowledge, experience and expertise have space in the decision making, planning and design processes in our research.

If we merely hear words and sometimes see each other’s physical responses (tears, sadness, joy, delight, or very clear dislike of talking about a subject) but don’t change our own thoughts and actions in the parts of the project we are working on together, then co-production hasn’t fully happened.

Co-production that doesn’t make a difference isn’t really co-production!

Co-production is surprising!

The answers we come up with together are very different to the answers we would or could have come up with alone. Co-production is about learning from each other and working together in synergy (in co-production 1+1 is definitely not 2).

We are more than the sum of our parts if we are really co-producing work. Though we can’t do everything together, working together on something is not a waste of time and resources.

Working together means that the project gets to benefit from all the knowledge, experience, and ideas of the people in the co-production process.

Co-production is jargon

We don’t all mean the same thing when we talk about co-production. So, we need to explain to each other what we mean, what we expect and what others can expect of us when we co-produce research, knowledge, resources, support and services together.

And this is also true of so many words that we use when we speak of write to each other.

Stopping to ask, "What does that mean?" and acknowledging we may not mean the same things when we use the same words is a very important part of the talking and listening, we need to do when we are co-producing both our research and the new support resources we are designing.

My colleagues are amazing!

Co-producing work with my colleagues, both in the Kingston University-based Victoria and Stuart project team, across our partner organisations and in the focus groups and co-design groups set up as part of this research project has changed my life forever.

You may have heard that our Kingston-based team was recently awarded the ‘Employer of People with a Disability’ award at The National Learning Disabilities and Autism Awards 2023, because our colleagues with learning disabilities are among the first to work with us as Research Assistants in a UK University.

Our Victoria and Stuart Project team includes authors, poets, dancers, singers, cyclists, gardeners, careers academics, managers, support workers, clinicians, and all sorts of professionals in the field of palliative care with people with learning disabilities.

All my colleagues' skills, bravery and experiences continue to surprise me and fill me with warmth at the privilege I have of working with them:

I am very thankful for the opportunity to be part of learning from leading this project.

As I shouted out loud whilst dancing to ABBA in my first ever Victoria and Stuart project focus group with people with learning disabilities “I love my job!”


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