Co-production power-cut

By Michael Turner, Policy and Strategy Manager, Merton Centre for Independent Living

It’s old cliché but time does fly and it's almost a year since I left my co-production job at SCIE to join Merton Centre for Independent Living.

Most of my career has been about supporting the development of user involvement. It's a simple idea that when the people who use a service play a meaningful role in how it is run, it’s probably going to improve the service and make it more likely that it will give people what they want and need.

I've worked on spreading this message all over the country over the past 25 years. Literally from the depths of Devon to the Highlands of Scotland. I even worked briefly with Disabled people and services in Russia.

Not just a new word

During my eight years at SCIE, the word co-production came into fashion as a way to talk about this way of working. I thought it was a bit of a jargon word and I wasn’t that keen when SCIE first wanted to talk about co-production rather than user involvement.

But I was persuaded by the idea wasn’t just sticking a new name on the same old thing. For a jargon word to have meaning, it has to be linked to doing things differently, and that's where co-production comes in if it's done properly.

Real co-production is about services sharing power with Disabled people and professionals working together on a more equal basis. It has become a well-established way of working in organisations like SCIE and local authorities like Oxfordshire County Council and Hammersmith and Fulham - it's even in National Institute for Health and Care Excellence (NICE) guidance and the Care Act, so it's almost part of the establishment.

Reality check

One of my first projects with Merton CIL was a review of adult social care in the borough. It was a real dose of reality about how social care works on the ground but there was real hope for it to be the first step towards improving the situation and the development of a co-production approach.

We're still waiting on this. Since we published the report the Council has stopped funding our Advice and Advocacy service. It's not been the great start to co-production we were hoping for, but we're now working on a review of housing and Disabled People in the borough. Co-production will be part of the message again so hopefully we'll have more luck this time.

Co-production in Action

Patrick Wood reflects on his experience as a member of the Integrated Personal Commissioning Evaluation Co-production Panel

In August 2016, the Department of Health commissioned an independent evaluation of Integrated Personal Commissioning (IPC), which is a new approach to joining up health and social care and other services. The evaluation was undertaken by a consortium led by SQW in partnership with SCIE, leading on the co-production side, and others.

A co-production panel ensured that the views of the public, particularly those that share characteristics with IPC users, could contribute to shaping the evaluation and test findings. The panel consisted of around 10 people who used services and carers working alongside researchers and co-production team members from SCIE and SQW.

The role of the panel included:

• Receiving and commenting on reports on the progress of the project
• Involvement in the development of research tools
• Identifying research themes from service user and carer perspectives
• Involvement in research team debrief meetings

One of the concerns of panel members was making the group accessible without oversimplifying the issues. When a person with learning difficulties commented that she had problems with the language used at one of the meetings, this was addressed by inviting her to lead a workshop on accessibility at the next one.

Sometimes, panel members were concerned with commenting on IPC in general rather than on the process of the evaluation in particular. For example, IPC struck panel members as a top down approach (which does not align with co-production principles) and it was hard to know what difference IPC had made to people who use services.

This illustrates that you might be surprised when working in a co-productive way. A key consideration for people aiming to work inclusively is how to bridge the gap between the different backgrounds and experiences of the people involved and a key question to ask is what is necessary to make working together meaningful for everyone.

Overall, the panel worked well. It was a pleasant group to be involved in (this might seem like a superficial observation but it illustrates that people were respectful of each other’s contributions). It was productive and made a difference. Most importantly, everyone acquired some new learning that can be used in other contexts.

Sharing power and decision making as part of a team

By Niccola Hutchinson-Pascal

We are the first to admit we don’t get everything right and some things don’t work – but that it is the beauty of a new project. Everything is learning, everything is adding to the Centre that we will launch as a collective in mid-2020. 

The UCL Centre for Co-production in Health Research has, since October 2017, been working hard to co-produce the Centre from scratch with a mixed group (open to anyone to join at any time) that includes members of the local community, patients, carers, researchers, healthcare practitioners and students. 

The sharing of power and decision-making is something that the Centre for Co-production feels very passionate about and is one of the key principles that we live by!

As part of the Centre development work that has taken place to date, we have tried extremely hard to share power and decision-making. This isn’t always straightforward but one thing in particular that helps us to achieving this sharing is that we are all open and honest about the challenges and work through them together. We are ONE team, no member of the group is more or less important than another member, we just bring different skills and experience to the table.

Taking time to build relationships first before embarking on any work is fundamental to us being able to operate in this way; it helps build trust between members of the group and enables more straightforward decision-making. We have also found that it means that sharing of power is easier to achieve, as people are more likely to be open and honest.


Photo credit: Beth Ingram, UCL Centre for Co-production collaborator

As part of the development of the Centre for Co-production, and in order to further test and refine our approach we are looking for collaborators (organisations or groups of individuals) who are interested in delivering a co-production innovation, piece of research or intervention project. We have recently opened a call for funding applications. The deadline for applications is 14 June.

To find out more about how to apply have a read of our latest Centre blog. We look forward to hearing from you very soon!

Grieving: A barrier to efficient co-production?

By Kevin Minier, SCIE CO-production Steering Group member

I often encounter carers who are still grieving for the loss of the person they cared for and many who are grieving and angry regarding what they see as inadequate care and support from the health and social care services. They are also grieving for the impact their caring role has had on their dreams for themselves and their families.  Unresolved loss/grief can express itself in anger, fear and emotional instability.

In this hectic world we live in it seems that more and more people are just not getting the opportunity to grieve the loss of: A loved one; their dreams; their health and independence; their career. Faith and cultural background also have a significant impact on how people handle loss.

As a full-time carer, when my mother died it was not until after the admin was all dealt with that it really hit me that she was no longer with us – and only then did I have the time to grieve and support my father and family with their grief.  If I was in full-time employment I would already have been back at work and had little time to work through the loss.

'Unresolved hurts'

At carer forums and workshops I regularly witness carers who are still very angry about the inadequacy of the care and support they feel they received whilst caring, long term, for the person they have or are caring for.  More and more are threatening to ‘stop’ caring and leave it to the authorities to sort it all out. 

These ‘unresolved hurts’ can greatly impact the effectiveness of a co-production team. Everybody’s experience and view (service user, carer, professional or member of the public) is valid, however, in order to work together co-productively and have the ability to consider all viewpoints subjectively these hurts must not undermine the process.

Unresolved grief 

All loss needs time to grieve but also things like time to think, talk, build and re-build relationships – and time to heal. With people living longer, many are living with long-term conditions; and parents are often outliving their children as well as their spouses.  I believe that the increasing loneliness in our society today is often because of the outworking of unresolved grief and heartbreak; as well as resulting in the ever-increasing demand for health and social care services.

There is a critical need for access to person-centred tailored therapies for all members of the team. Professionals may be unable to share control of the process or the outcome due to their own experiences, conditioning, fears and hurts.  I would suggest this requires access to psychological therapies as well as a spiritual care team.

Effective co-production team members are very valuable and need to be trained, nurtured and retained; just like any member of our increasingly specialised workforce.

Co-production: more than storytelling

By Chloe Juliette, Expert-by-experience and consultant at the consultancy Traverse.  

Despite being a care-experienced consultant and researcher, I have still found myself, at times, feeling like a young foster kid; just as traumatised and lost as I ever was and staring into the abyss of the ever-daunting question: “How do we make the system better?” I am often overwhelmed by the amount of information I’ve had to take in and consider, though organisations like SCIE do a great job at providing an open and safe space to do so. 

I have felt sometimes awkward, and unsure. As a confident 28 year old, no longer burdened by the system that I was once trapped in, it surprises me that I still regress so much; but I’m very glad that I still vividly experience what it is I’m asking of, say participants at deliberative events, when I put challenging issues and big questions on the table as a facilitator. 

The most interesting thought streams I had at a recent co-production event were threefold:

• I wonder if the current culture allows social workers to say they’re struggling, or they feel they’ve made a mistake? 
• Principles and regulations are often broad, but how can you measure something non-specific? 
• There should be something in their mandatory reflective practice on implicit bias and identifying and mitigating those biases. 

Co-production isn’t just getting people in to tell their story, as whilst that can be valuable it can also give a narrow view of only a small amount of experiences; and if co-production is to be what it says it is, then service users should be coproducing the exams, delivering assessments, and providing mentoring - all of it. Otherwise it’s not partnership, and we’re in danger of it simply being another exercise in well-meaning tokenism - which ultimately furthers inequality.  

There’s something really crucial in power dynamics and equality that I’ve been thinking about for years on and off. Language and accessibility of course plays into this: How can people engage with something they can’t understand because it’s full of jargon or there’s too much of it to digest? How can anyone challenge something they don’t understand or have access to?  

We need an open learning culture of reflective practice and an environment which values relationships and growth. In the words of leadership and governance specialist Dr Sue Goss: “If we want a more humane system then we need to recognise that the interaction between the public and the system happens on the front-line.” If that’s true, perhaps we should treat the front-line more humanely - then perhaps it will filter through.