Co-Production has emboldened me

By David Grimm, artist and consultant

Introduced to a new world

I have been involved in co-produced work for going on sixteen years. Ever since I was taken into care, all the way through to being a 30-year-old man.

As a child I was used to my world being done for me and I was in large part a bystander to my own life. 

This cycle was broken by a member of staff who realised that I had been isolated in care by things being done for me and that I lacked any drive-in life.

So, they suggested that I attend a local advocacy agency and get involved in a drug and alcohol awareness group, I was really nervous as I was expecting to sit down and have everything done for me and to me and I would again just be there for the sake of being.

Realisation of the impact it had

To my absolute surprise, that wasn’t how this group worked, and in fact it was frowned upon by the other young people to work in this way, as they had been empowered and had autonomy in how the group was run. What work they took on? What materials they used for educational purposes…from that moment on, I have struggled with any “youth work” that doesn’t employ a co-production approach.

I managed to attend ten years of different projects before taking time to myself and when I stopped, I felt completely hollow and only lasted twelve / thirteen months before engaging with a new group.

Another new world

This group had a completely different method of co pro than I was used to. This being that the shared power was just that, 70 – 30 in favour of the young people. It was incredible.

These young people had come up with plans of action for a funding initiative that would wholly benefit young care leavers and had taken it to the board for legal approval.

They implemented the roll out of their own plans and the advertising of everything to do with the group, from funding applications through to recruiting new group members.

I have never felt as empowered as I have when being surrounded by this wholly inclusive group of people from the same background as I am and the staff that work alongside us!

All co-production has strengths in spades but this one holds strength in the power divide, the young people are key to making it work. 

I now feel I run my own life, and no longer watch idly by.

Co-produced films about patient engagement

By Nicole Kirby, Macmillan Engagement Lead, North of England

At Macmillan Cancer Support we’re about to launch two short films about the benefits of engaging people affected by cancer in the development, design and delivery of cancer services.  The films  - one aimed at people affected by cancer and one at professionals - are the culmination of over a year’s work with a group of patients, carers and healthcare staff, who want to share their enthusiasm for engagement with others.

Whilst the initial idea for the films came from myself and a colleague, the work has been very much a co-production approach, bringing people who’ve had a cancer diagnosis & those that care for them together with cancer professionals, to shape the project with their knowledge and experience.

Together they:

• Agreed key messages & audiences
• Appointed a video producer & came up with a concept
• Wrote the scripts & starred in the films. 

The process

The work has been as much about process as product, so my role has been facilitating and supporting the group; allowing time for the group to get to know one another and come to shared understanding  about the work, supporting individuals to be involved, and helping to ensure they stay firmly in control.  Fundamental to this is the concept of power sharing; treating those with lived experience as the experts they are, and putting them in the driving seat alongside cancer professionals.

The benefits of co-production

Taking a co-production approach for this work has taken a lot of time and effort, but I think it’s worth it – the product is the result of the group’s experience, skills and commitment, and group members have commented that they’ve found the process ‘empowering’ and ‘patient led’ and that they are now ‘passionate about engagement’.  

The films will shortly be available on Macmillan’s website and Youtube/Vimeo channels.  The group hope the films will encourage other people to value engagement the way that they do, because (in their words), ‘Together, our combined expertise can make the world of difference.’   

Power-sharing: A journey

By Mike Goodwin, Gemma Stacey and Linda Sunderland, School of Health Sciences at the University of Nottingham


We pride ourselves itself on our reputation for working in partnership with the public in education and research. Following an external review, the school committed to an ethos that supported co-production.

A new structure was developed to enable this. However, in practice people involved experienced their influence inhibited by existing power structures. Then the School unilaterally altered the way it engaged members of the public, to comply with new employment law - those affected felt disregarded, disempowered and undervalued and, crucially, that the School’s actions contradicted its espoused values.

The ensuing reaction challenged the organisation’s executive power. People collectively empowered themselves, mobilising their resources to express their discontent; their cause was supported by academic staff and trade union representatives.

With the prospect of reputational damage and withdrawal of public contribution to curriculum delivery and quality monitoring, there was an organisational impetus to redress the power imbalance. However at one stage, the two ‘sides’ held widely diverging perceptions of each others motivations and there seemed little prospect of a solution.  

A way forward did emerge - via an open meeting where a crucial power shift occurred facilitated through active listening, understanding differing viewpoints, accepting criticism and compromise. This enabled collaboration towards a solution, including a more equitable public engagement structure - the established power structures had adapted to accommodate a new one.

REFLECTIONS

Although the process was challenging we realised that whilst our motivations were different, our end goal was shared - to achieve the best quality educational experience for our students and to positively impact healthcare practice.

We hope to embody our learning and develop a shared culture. There is commitment to ensure developments are based on mutual agreement; and an awareness that power lies not with one or other part of the organisation, but within the process of developing solutions that are jointly accepted. Such mutually shared power can fit within or alongside existing power structures, and challenge and inform them. What will be most important is that the honesty and transparency continues and this enables everyone to work collaboratively towards change.

Collaboration in the regulation of social services in Israel

By Hilla Dolev, Team Leader, Regulation and Quality Assurance, Myers-JDC-Brookdale Institute

Regulation of social services aims to safeguard the rights of people receiving care and to improve the quality of care. Real-life regulation is a challenge in light of the multiple stakeholders such as the government, the public, the inspectorate, service providers and of course, the service users themselves, who have many, and sometimes conflicting interests. Under these challenging circumstances, it is important to develop a meaningful collaboration with service users, particularly in the three main regulatory tasks: standard setting, standard monitoring (commonly referred to as inspection) and enforcement.

Why collaborate with service users when setting standards?

Standards guide the implementation of policy. They reflect the goals and define the values by which the services should function when providing care. So, if there is a genuine will to form user-centered and responsive services that recognize users’ needs and rights and to strive to meet them, it is crucial that service users take part in setting these standards.

Why collaborate with service users when inspecting services?

Inspection is about examining the ways in which services actually operate as compared to service standards. It requires ongoing actions of observing and tracking the services' strengths and weaknesses, the improvements as well as the violations, which may indicate danger. As much as regulators have information about what is going on, even the most sophisticated data collection cannot provide the whole picture without involving service users who actually experience the care.

Why collaborate with service users when taking enforcement actions?

Enforcement requires making judgements about the quality of care, and taking actions accordingly (e.g. performance scores, licensing, incentives, and sanctions). These judgements and actions affect not only the providers and the market, but first and foremost the people using the service. Moreover, they are based at least partially on interpretations of the quality of the service. Therefore, enforcement cannot be complete without taking into account the users’ perspective.     

Final thoughts

In Israel as in other countries, there have been different levels of service-user involvement in the regulation of social services for more than a decade. However, it is not enough to celebrate its existence. We should also ask: what is the scope of involvement in each of the regulatory tasks, and how well are we utilizing this important resource?  

 

Getting away from tokenism: Co- producing a Strategic Review

By Charlotte Crabtree, KeyRing Living Support Networks

This Co-production Week we thought ‘what better way to celebrate than to do some co-production?’


We launched our Strategic Review by starting with KeyRing Members. This week we’ve been out and about across the country asking people where they feel KeyRing should be in the future. 

Grimsby network Members

The leadership team could sit around a table and come up with a brilliant Mission and Vision. After all, we know who we are and it would be cheaper than the hours spent with Members getting their feed-in. That approach is just not us though and it certainly is not co-production!

We could write the Mission and Vision and send them round to the Members for feedback. That is not co-production either. That is tokenism at best.

Instead we are asking people (Members) what they want KeyRing to be. This is the start of our new future Mission and Vision .

This is only phase one. The next phase will look at this feedback and give us the basis for some more in depth and focussed review. It’s a process informed by the Members. A co-produced process.

Even Phase 1 is carefully considered to ensure that people’s thoughts and feeling are not restricted by a framework of responses. Every session is tailored to the skills of the Members attending to get the best out of them and include everyone!

West Bromwich network Members 

Here are some of the things that people have said so far about what they envisage for KeyRing’s future:

• More help supporting more people
• Everyone chipping in – making it more peaceful
• Expanding business – but not too much
• German KeyRing, France KeyRing etc…
• More memberships, more staff
• Counselling
• Make sure we support people that want support and that Members engage
• Support members into employment and or volunteering
• More services for people in our area.

The range of input shows that people have a really informed and inspiring vision for the future of KeyRing. They are interested and engaged in the future. They are also thinking beyond their own lives and considering the options for people who are not already receiving this kind of support. We know that many of our Members were really affected by the Panorama programme on Whorlton Hall and want more people to have the opportunity to live in their local community.

Andrew - a member in Staple Hill

I look forward to sharing the next stage of our co-produced strategic review journey.

Find out more about us at https://www.keyring.org/
Charlie.Crabtree@keyring.org

Letter from America. Daniel and true co-production

By Diana E. Matteson, Director of International Programs & Development, YAP, Inc.

We’ve all done it. And perhaps beautifully. Done the PowerPoint, practiced our lines, divvied up the responsibilities if we have co-presenters. All to share our mission, our daily labor, our vision of what makes for a better world. And after we squeeze in the relevant information, we share a story. A service user’s story, with permissions granted for real names and actual photos, maybe artwork or a direct quote. And to be most effective-there needs to be a face and a real story. But are we doing that individual’s story justice? Is what we consider the most relevant what really made a difference for that person?

What if we shared the stage, the opportunity to educate and potentially influence, the power with the individual most invested, the “service user”?

We decided to find out. Alongside Daniel, an autism self-advocate, aka “service user,”; we composed a proposal for the 2019 European Social Network (ESN) Conference and sent it off in darkest winter with the conference site of Milan in June a sunny thought to sustain us through the snow. Just about the time winter reached its icy limits, word came from ESN that our proposal was accepted.

Here is where the magic begins. Over a matter of months, we created the presentation. Daniel worked one-on-one with the local director of Youth Advocate Programs (YAP), Inc. in Pittsburgh, Pennsylvania where he lives and remotely with me in Washington, DC and our colleague in Galway, Ireland. Every aspect of the presentation from the images, font and color choices in the PowerPoint to the content of the presentation and script involved Daniel. The process was co-productive with Daniel taking the lead at times and allowing others to share expertise and guide in other moments. 

In a true collaborative space, Daniel led us in how his story should be told. Daniel’s journey from defined-by-a-diagnosis to advocate, documentarian and international presenter is remarkable, and I invite you to read it.

Daniel Hackett

But it is the development of a proposal, a presentation, a script and many dress rehearsals later in the sharing of power, true co-production, to authentically tell a story that I invite you to consider and celebrate with me.

YAP is an international nonprofit organization exclusively committed to the provision of community-based alternatives to out-of-home care through direct service, advocacy and policy change since 1975. yapinc.org

Yap tweet @YAPinc

Reflections on my first Co-Production Week

By Kate Pieroudis, Co-production Development Manager at the Social Care Institute for Excellence

It didn’t start well. I locked myself out while getting milk so disturbed 30 older people in the Community Centre across the road doing their rehabilitation exercises explaining it was an emergency- the first day of Co-Production week and could I borrow a ladder? They blinked at me, bemused.

As I was scaling the 30ft garden wall with their ladder- the lovely crystal-wearing bohemian French man who runs the Centre and my very posh neighbour (ready to call an ambulance in case I fell) both applauded as I disappeared through my bedroom window- a fine example of co-production, I wondered? 

I dusted myself off and started Tweeting about the launch of our report ‘Breaking Down The Barriers to Co-Production’ – informed entirely from people who came to our Co-Production Festival last year. Standout thoughts from the report- people we asked said the two things that would strengthen co-production the most were bringing together evidence of what works in co-production and more leadership from senior managers.

I then shared the great blog from Kate Terroni, Chief Inspector of Adult Social Care at the Care Quality Commission.

Tuesday saw the launch of the first ever Co-Production Podcast! Oxfordshire County Council and Kirklees Council told us about the barriers to co-production in large complex organisations: lots of teams, shifting priorities and shrinking pots of cash with practical solutions to how they’ve succeeded in setting up a Co-Production Board with SCIE’s support in Oxfordshire and co-producing a policy on how they pay carers in Kirklees. Professionals were interviewed by local people- a perfect example of sharing power- the theme of Co-Production week 2019.

140+ people joined our Webinar on Wednesday on how to run accessible and inclusive events including one from Canada! (co-delivered with people with leaning difficulties). We launched the co-production ‘attitudes’ survey and two fantastic members of SCIE’s Co-Production Steering Group ran a successful Twitter event that night.

For me though, the jewel in the Co-Production week crown has to be our Co-production Festival. Over 150 people attended to celebrate co-production, collaborate and innovate- our Chief Executive Tony Hunter stood on chairs, worked the room and whipped up a semi-frenzy with his rendition of ‘I’m a Believer (Co-Production YAY!)”. Headliner Lemn Sissay told me as we put together the finishing touches to his blog  “What SCIE is doing by running this Festival is beautiful- providing a space where young people will be heard” Our six seminars went swimmingly and over lunch I saw people exchanging ideas and contacts for more co-production to hopefully happen.

I woke up to a text from Lemn Sissay saying “I should say thank you. To be in a place where my ideas and story are received is incredible for me.”

And that’s the message – people sharing their stories means relationships being built that leads to more equal power sharing between professionals and people who use services and carers - the key ingredient for meaningful co-production to happen.

*names and identities of Hackney residents changed to protect the innocent

Co-production: Sharing vision, ideas, and solutions that are much more likely to work

By Clenton Farquharson, Chair of Think Local Act Personal

In amongst the cacti, the tropical palms, and expansive lawns of Birmingham's Botanical Gardens, something exciting was happening: a Citizens' stakeholder event to launch the Midlands Citizens Leadership Academy. This new group is the brainchild of Suzy Harris at West Midlands Leadership (part of NHSi), and aims firstly to bring together and prepare citizens so they can contribute fully to coproduction, and, secondly, to encourage organisations to use coproduction more and better. 

We at Community Navigator Services CIC (CNS) have been part of the co-design team and were talking about coproduction as our contribution to the day. In the spirit of coproduction, we co-designed and co-delivered our presentation: Rob made the crowded room laugh, and that was before he read one of his poems; Clenton encouraged us to share big, bold dreams, and Jack's explanation of the tlap ladder of coproduction reduced the room to tears — but you can't win them all. 

Our theme was that coproduction is a tree. You need deep community and citizen roots which support the organisational trunk and branches. You need sunshine, and even a little rain. Together, you get a healthy eco-system that can make all our lives better. We talked about what coproduction means to us in real terms: power sharing for a new society, the equality of all voices, the need for healthy disagreement on the way to achieving shared solutions, and the importance of feelings as well as facts and opinions. 

We think it went well, but don't ask us. This is what others had to say: 

"Our framework has been designed to create a culture which empowers our citizens and values their voice as an equal partner in health and care services.  However, we also acknowledge that we can only deliver this vision where professionals and leaders buy into the wider purpose, understanding how Citizens can have a positive impact." Suzy Harris, West Midlands Leadership.

Faye Hall and her group of young citizens (Kitty, Demi, Kyle, and Cleo) said: 

"Coproduction is so important to young people because they are the citizens of the future. Coproduction gives them a voice. There is no one who knows their experience better than themselves. It enables those making decisions to open their minds and everyone learns from each other. Coproduction can exist on many levels and to varying degrees but the key is to be clear, honest, open, and transparent so that services reflect the needs of the communities around them, by sharing vision, ideas, and solutions that are much more likely to work."

And finally, Rob will not let us leave without quoting from his poem: 

Engaged in a group that see us all as equals
Where the marginalised voices join
the central voices as one.
Understanding each other,
I can give a positive, personal difference. 
The root to the tree.

‘A childhood in care almost broke me – I needed to shine a light on it’

By Lemn Sissay, who performs at the SCIE Co-production Festival on 4 July 2019.

The power of story and co-production.

Stories are powerful. They can educate, sustain and also heal - both the person sharing the story and the person receiving it.  A key part of co-production is recognising that everyone has assets and brings something to the table. Because of our experience - our story - our point of view is vital. Sharing a story and supporting someone who is experiencing something similar is sometimes called peer support.

But I struggle with the idea of people sharing their stories again and again but not being given the power to change things for the better.

In my documentary Superkids: Breaking Away from Care I saw seven young people share their stories and experiences and the years of pent-up anger and pain they felt. We were all honoured to receive a Bafta nomination in recognition of our stories.

I’ve battled with Wigan Council to put right the wrongs of my appalling treatment in care since being born up to the age of 18. It wasn’t good enough for me as an artist to go banging on about my story without getting the institution (my legal parent) to pay for what they did.

SCIE’s Co-Production Week is about creating a more equal power balance between people who use services, carers and professionals. It’s only when everyone’s contribution is valued equally and power is shared that meaningful co-production can happen.

My friend Lebogang Mashile says beautifully in her poem ‘Tell Your Story’

“Tell your story

Let it nourish you,

Sustain you

And claim you

Tell your story

Let it feed you,

Heal you

And release you

Tell your story

Let it twist and remix your shattered heart

Tell your story

Until your past stops tearing your present apart”. 

I don’t believe I can give young people, or anyone receiving social care services a voice. Their voice is already there. We just need to listen.

Sharing power – Making it Real in Norfolk

by Hayley Burwood, Jo Clapham, Julie Brociek-Coulton, Penny Holden, Tom Fadden and Mary Fisher


Co-production cannot work without sharing power and decision-making. This invariably means that one group has to give up some power in order for others to gain influence. In Norfolk a three-way partnership has been set up so that Adult Social Care commissioners and County Councillors share decision-making more equally with people with lived experience of using Adult Social Care
Services. Our blog shows how we share power by making sure everyone can participate, co-chairing, co-opting councillors and actively championing co-production.

Hayley Burwood, Co-chair

Making it Real Norfolk

People with lived experiences can be left voiceless because documents or the way someone presents information is inaccessible. At Making it Real we try hard to be inclusive so, not only do we provide accessible information, we provide it in an inclusive way. For example, giving ourselves enough time to digest the information. Hayley co-chairs Making it Real Norfolk and has developed a guide for visitors to the Making it Real Board so they can prepare their presentations in plain English and easy read format. Hayley says, “Sharing power is about the team all working together. Putting all those views together is an amazing thing because everyone is involved.”

Jo Clapham, Co-chair

Making it Real Norfolk and

Adult Social Care

commissioner

Jo says, “As a Commissioner of Adult Services, I look at data such as how many people have used a service, how long for and what happened to them afterwards. But will this never tell me what it feels like to use a service, what really makes the difference and what can be improved. Meaningful decisions about services cannot be made unless we work together with the people those services are there to support.”


“Hayley is the elected co-Chair of the Making it Real Board and I usually co-chair the Board meetings with Hayley on behalf of Adult Social Services. The fact that we chair the meetings together is a good example of power-sharing. In fact, as Hayley is the elected Co-chair and I am not, I will always follow Hayley’s lead, and be there to support her and guide discussions when needed with my experience of the county council and adult social services. Hayley and I work
really well together as we bring our different backgrounds and experiences together to make sure that all Board members get to have their say.”

Councillor Julie

Brociek-Coulton

Councillors have been co-opted onto our board. Julie is Norfolk County Council Carers Champion. Julie says, “When I was asked if I wanted to be co-opted onto Making it Real I was really excited because I had heard of the good work the group does. Working with Making it Real has helped me to push through the council rights for disabled people and co-production. A good example of co-production was when we were putting a group together for the Carers Day on 14th June. I made sure that as Carers Champion for Norfolk we had 3 carers to give advice on what they thought would make the day a success. Thanks to them it was.”

Penny Holden,

Champion of Co-production

Penny is a Champion of Co-production. Such has been Penny’s activities, it was hard to know which things to omit from this blog. Penny is a strong advocate of peer support and better mental health services and she is
promoting co-production training. Penny says, “I have a lifetime’s experience of mental health services and I am also physically disabled. I took forward my ideas on peer support to adult social care and, as a result, a peer support project is underway.”


“We need to show people how to co-produce. Norfolk’s mental health services have been in special measures three times. My lived experience means I can help them to share power through co-production to find a better way forward.”

Tom Fadden, Chair of Equal Lives

Tom is Chair of Equal Lives, a disabled peoples’ user-led
organisation supporting disabled people in Norfolk and beyond. 

“As a new member of Making It Real I am really pleased to see the constructive dialogue between all members from many different backgrounds working
towards improving Adult Social Care Services for disabled people in Norfolk. I was particularly pleased the group were able to have discussions and share their experiences with the Director of Adult Social Care in Norfolk to give reality to what is happening on a day to day basis for people who use Adult Social Care Services. Co-production goes hand in hand with independent living and ensures that there is nothing about us without us!’”

Mary Fisher, Making it Real
Norfolk Coordinator

Mary Co-ordinates Making it Real Norfolk. Mary says, “Jo and her colleagues in adult social care helped us to meet with councillors and not one but three councillors asked to be co-opted onto the board. We have never looked back. We are sharing power more equally so everyone has a voice. It is no longer a “them and us” approach but is meaningful co-production.”

Making care better by working together

By Imelda Redmond, National Director, Healthwatch England

I was delighted to see that ‘Sharing Power’ was the theme for this year’s co-production week. It’s a topic close to Healthwatch’s heart, and at the very core of what we do – empowering people to speak up and encouraging professionals to listen, in order to make care better together.

The Social Care Institute for Excellence (SCIE) has been at the forefront of this movement for some time now, breaking down barriers, and supporting thousands of frontline staff and services to better understand the value of working in partnership with the public. 

At Healthwatch, what we always see is that services work much better when people are listened to and invited to give their opinion on what’s working well and what isn’t. We’ve heard some great examples of how, when we as health and social care experts take a step back to gain a fresh look and respond to what people want, it can lead to inspiring changes.

For example, Tony from Durham spoke up because he struggled to find a care home for his mum as there wasn’t enough information available online. His council took the time to listen, and now ensure that every care home in the county publish consistent information about their service on a single website, making it easier for families to find support.

But for every story like Tony’s, we unfortunately do hear others where experiences are not positive. This week, we published a report highlighting people’s experiences of dementia care, and the devastating effect on families when they ask for support but feel ignored.

So I must ask, why aren’t we consistently making time for these important conversations? Whilst resources in health and social care are undoubtedly overstretched, and time is limited, I fully believe that if professionals and the public continue to work together we can improve care even further.

How can we govern cities differently? The promise and practices of co-production

By Beth Perry, Catherine Durose, Liz Richardson and The Action Research Collective

National Co-Production Week sees the launch of research findings on the promise and practices of co-production in governing cities differently.  The Jam and Justice research project looked at what is needed to connect decision-makers, civil society and citizens (‘the jam’), involving those usually excluded from such processes to address urban issues (‘justice’).

The research was co-designed between three Universities (Sheffield, Manchester and Birmingham), a VCSE membership organisation (GMCVO), and an Action Research Collective (ARC), made up of people recruited from diverse walks of life.

The ARC developed ten small-scale action research projects.  Each project looked at a distinct urban issue: for example, how energy is produced for cities, how public money could be spent to produce more social value, how people could be better supported to live a good life in their own homes, and what new roles local politicians could play to work even more productively with communities. We also explored routes to participation for women, people who feel disconnected from formal politics, and younger people. 

Our report  out today, How can we govern cities differently? Thepromise and practices of co-production identifies seven practices of co-production.  These include: designing for openness, shaping the dynamics of participation, blending expertise, humanising experiences, linking voice and values, connecting with formal policy and decision-making and holding the process.

The report cautions that there is no simple ‘fix’ or method for co-production.  But it has potential to contribute to transformative changes, such as shifting imaginations about the possible.

‘Jam’ needs ‘justice’, we conclude, ‘if co-production is to address the big urban challenges of our time.

To realise the promise of co-production, without replicating its pitfalls, requires widespread cultural change, different kinds of leadership and institutional reform.

Download the report here, and find out more about our work by visiting our website: jamandjustice-org.uk. You can also contact us by emailing b.perry@sheffield.ac.uk.

If you’re reading from Greater Manchester, get in touch to find out how you can join the community of practice around co-production in the city-region to #CoProduceGM.