The fourth annual Co-production Week and Festival. 1 - 5 July 2019. The theme for 2019 is 'Sharing Power'. Co-production: "Designing, delivering and evaluating services in equal partnerships with people who use services and carers - Nothing about us without us" #coproweek
By Steve Palmer. Communications manager at #coproweek organisers SCIE - and father to Stanley
Yesterday my son was cheered by 10,000 people. Let me explain. Stan has Down's Syndrome and goes to Saracens once a week; not to play rugby but to do cheerleading. So on the last home game of the season Stan and two other young men (who go to the club and play rugby) were asked to come and hand out hampers to the people in the boxes and to give speeches to the banqueting tables. We explained to fans what the Saracens Sport Foundation does in the community. The three young men also took the ball on the pitch before the game kicked off.
Keeping the teams waiting
So I got to say the same thing to fans eight times and on each occasion I honed it. By the end I was putting together something more-or-less coherent and it goes like this:
Not just doing us a favour
I sometimes get irked when I see that a person with Down's or another learning disability has scored a touchdown or done something endearing like dance along to a busker. Not because they're doing it; all power to them. No - I get disappointed because the press report it as if it's some amazing event and often say it's 'heartwarming' and 'inspirational' when the person involved couldn't care less whether it is.
So I told the Saracens fans, as they tucked into lunch, that Stan, Mark and Ollie weren't speaking to them and taking the ball on the pitch because someone was doing them a favour. They weren't the recipients of some kindly act because they suffer so much in their lives. That's an old-fashioned and patronising take on this kind of thing.
It's a relationship
No. I told the rugby fans that in the same way that Saracens are putting something back into the community, Stan, Mark and Ollie are doing so likewise. It's a symbiotic relationship that I know Saracens Sport Foundation 'gets'. The fans yesterday met three young men who are great advocates for showing that people with learning disabilities have so much to contribute; by playing sport, by learning dance moves; by teaching tolerance and understanding; and by standing up and telling people about it. So they weren't there to make up the numbers in a condescending way. They were there to be part of a success story.
By Clare Evans MBE, first
director of Wiltshire Users Network, 1991-1997
Co-production! It is a comparatively
new word in common use in social care – 25 years ago it is what we called user-
controlled user involvement - it stood at the top of the ladder of user
involvement for those of us who used services and valued involvement.
Why did we value it then and what similarity is there with co-production?
There were one or two important
factors we valued and fought for as we set up Wiltshire Users Network (WUN), a
generic user - controlled network of long term users of Health and Social Care,
in November 1991 in response to the new NHS and Community Care Act which first
enshrined the terms “user” and “carer”. Although these terms later came to
restrict people, they helped us then, define a new identity for ourselves to
gain a voice and move beyond “professionals know best” to involvement on equal
We learnt that by building our
own organisational culture and values, we could gain confidence and negotiate involvement from the start
on our terms. As well as agenda-setting, we could prepare adequately and
collectively to take forward the views of many “service users”. Of course,
funding for WUN was crucial to establish good practice in paying fees and
travelling expenses to service users, to sit alongside professionals to plan
and monitor services. A negotiated service agreement with the local authority
gave us the flexibility we needed and we began our involvement! Once, I counted
64 different ways we were involved in health and social care!
So was it all worthwhile?
We recognised we were there for
the long term - to change the culture of social care as well as direct service
provision. Ultimately the growth in Independent Living, and the legalisation of
Direct Payments gave the flexibility many sought. Undoubtedly the shared
understanding of co-production good practice has brought equity but how much
happens at local level? Sadly, austerity has changed the landscape in recent
years but whatever the financial climate, undoubtedly best practice comes from co-produced
By Helen Sanderson, CEO of Helen Sanderson Associates
is 91. She has short, wavy grey hair and glasses, and she lives in Devon. Until
a few months ago she was managing at home with the support of her family, but
now needs a bit more help.
Wellbeing Team supports Ruth. Wellbeing Teams
are a new model of care for people living at home. They are small,
self-managed, neighbourhood teams, with co-production at the heart of the
design of the service. This means that Ruth
is fully involved in decisions about her care and support as well as how the
wider service develops.
What she is
supported with – her outcomes and her priorities
Where we wants
to be supported – in her home and community
wants to support her – her own team
When she is
supported – what times of the day and days of the week
How she is
supported – in the way that reflects what matters to her.
wonder what Ruth would say was important about co-production? What matters most
to Ruth is being supported by people who care.
says, “The people who come into my home, we laugh, they know me and they
care and that is what matters to me.”
Ruth should be able to expect that everyone who
supports her is caring. That should come as standard, although we know in home
care that is not always the case. In Wellbeing Teams we wanted to go further
than that. Getting a good match is perhaps one of the most significant
determinants of quality from the person’s perspective. How miserable it must be
to be supported, even competently, by someone you don’t get on with.
Ruth's one-page profile
match means taking into account the characteristics of the person and looking
for common interests. This makes it more likely that people will get on together
and have something in common to talk about right from the beginning. Co-producing
this decision is critical. This is more than involving people in centralised recruitment
and selection processes, it is about people choosing their team.
People like Ruth, supported by Wellbeing Teams, can
choose from three or four team members who are available. They do this by being
shown their one-page profiles and the one minute film. In the one-minute film
the person introduces themselves and share three things that matter to
When we think about co-production, it is important
that we prioritise the decisions that matter to people, like choosing who
By Dr Gary Hickey, Senior Public Involvement Manager, INVOLVE (a national advisory group that supports greater public involvement in the NHS)
Co-production is a term I increasingly see used to describe how people have gone about their research - often with little explanation of why the approach has differed from collaborating or consulting with members of the public. To me, it seemed to be just the vogue term for public involvement in research.
So it was with some trepidation that I agreed to lead an INVOLVE project seeking an answer to the question ‘what is co-produced research?’
From co-pro sceptic to advocate
The first stage of this project was a roundtable event which included public members, academics and National Institute for Health research staff. The event transformed me from being a sceptic of ‘co-produced research’ to a fervent advocate (and not just because I was in a minority of one!)
We looked at the principles that other organisations have produced, including SCIE, but we didn’t really feel that they worked properly for us in a research environment, so we decided to develop our own!
We decided that it would be too difficult to agree on a precise definition, which wouldn’t work for everyone anyway. And after all, we want to encourage innovation – not stifle it. So instead we agreed that we should identify some key principles of co-produced research. We hope that these principles will be used by both the research community and public as guidance for their own work and something to aspire to – then there is also opportunity for innovation in how the principles are met.
Research: improving and enhancing public involvement
The principles can be used to critique projects and to encourage suggestions on how project teams can go ‘further’ in their public involvement plans. In this way it can lead to the improvement and enhancement of public involvement in research. You can read about the round table event and emerging key principles in this pdf document.
The project itself continues. A literature review and interviews are currently being undertaken by Research Design Services in London and East of England. This will be followed by a workshop to further develop these principles on 25th May 2017. For further information do contact me at Gary.Hickey@nihr.ac.uk