To mark SCIE’s Co-Production Week, #coproweek, which runs 2 July to 6 July 2018, Mandy Rudczenko, member of C4CC’s own co-production group has written this blog post on the importance of co-production being a long-term relationship. Mandy’s post is timely given that this week we’re also celebrating 70 years of the NHS #NHS70. It highlights just how far we’ve come over the years in recognising the importance and value of co-production in health services.
Mandy is a former mental health nurse and adult education tutor and helps her son to manage Cystic Fibrosis. Mandy has become an active campaigner for co-production of health and social care services, person-centred care, and self-management of long-term conditions and has contributed to design and co-production of many NHS services. She has served as an Expert by Experience on the Five Year Forward View People and Communities Board, as a lay member on a Clinical Reference Group (CRG) and is a member of the East Midlands Clinical Senate Council Read Mandy’s full bio here.
I recently found myself using the phrase ‘Coproduction is not a one-night stand’. It seems quite a popular way of emphasising that ‘Coproduction is a long-term relationship’ (TLAP – Ladder of Coproduction, see below).
In my 5 years as a patient/carer representative, aka patient leader, aka patient ambassador, aka expert by experience, aka lay member, aka patient partner, the most important thing I have learnt about co-production is that it isn’t a new thing. I remember having a brilliant English teacher when doing my ‘O’-levels. She treated us like adults and we planned our lessons with her, as a class. I didn’t know at the time that we were co-producing. All I knew at the time was that, this teacher was popular because she realised that our contribution to lesson planning was of equal value to hers. She was brave enough to break down the hierarchical barriers and, as a result we more motivated and learnt more. To me this shows that the basic principle of co-production is that we treat everyone involved as an equal member of the team. Surely that should happen anyway? Why does it need a label?
In terms of health and social care, it gets tricky. I vividly remember my first meeting as a lay member, at a Clinical Reference Group, 5 years ago. I was terrified. I had to go to London, which felt like an expedition. I was able to claim back the train fare but wasn’t paid an involvement fee. I didn’t even know what an involvement fee was, and, to be honest, I felt honoured to be invited! During the discussions I felt like a fraud as I didn’t understand a lot of what was said. I managed to suggest a few things from a patient/carer perspective, so I walked away quite pleased with myself. It took 3 months to get the train fare back!
So, was I an equal member? I now know that I wasn’t, and that CRG’s and similar hierarchical committees, actually make coproduction impossible. I wasn’t an equal member of the CRG for many reasons. I wasn’t involved in producing the agenda; I wasn’t able to access the medical information being discussed; I didn’t understand my role. Looking at TLAP’s Ladder of Co-production (below), I definitely felt coerced, and flattered, which is even worse!
For co-production to work, the public has to be equally involved in planning AND delivering services. TLAP’s Ladder of Co-production (below) clearly shows the importance of ‘doing with’.
In the last five years I have experienced some excellent examples of co-production. The most exemplary examples are those which involve ‘co-producing the co-production’. As a member of C4CC’s co-production team I was involved in co-producing its ‘Co-production Model’:
It was lengthy process, demonstrating the commitment to doing it properly. The process of co-producing it reflected all the values and behaviours within the model. The model wasn’t done to us or for us, it was done with us.
Similarly, I have recently been involved in an ‘Expert Advice and Ideas Session’ to co-produce the UCL Centre for co-production in Health Research:
In her blog, Niccola K Hutchinson Pascal (Project Manager) says:
“For me, it was critically important that the process of developing the Centre needed to be a shining example of good practice in co-production – after all, how could we show/tell people how to do co-produced research properly, if we weren’t doing it properly ourselves?!”
When I first started my journey as a lay member, I didn’t know what co-production was. I knew that, as my son’s carer, I was sick of us being ‘done to’. I now know that true co-production has to start on Day 1.