Why I support co-production week

By Francesca Martinez; comedian, speaker, actress and writer 

I got quite excited when my agent told me SCIE wanted me to do a gig for them. Of course, I thought it was going to be Sky TV. And she said something about co-production which really got me interested. Was it going to be HBO? Or AMC ?

It turned out to be the Social Care Institute for Excellence, shorten to S-C-I-E, and pronounced sky. So not quite what I was expecting – and where did co-production fit in?

I’ve done my share of campaigning and flying the flag for disability rights, but I’d never heard of co-production. It turns out that co-production is all about disabled people, service users and carers having a voice and working with professionals to make health and social care services the best they can be. 

During Co-production Week, all sorts of people and organisations are holding events, blogging, tweeting, sharing experiences and making co-production commitments. It’s amazing that so many people across the country are all working to improve life for everybody and make their voice heard.    

What co-production means to me

One of the slogans that sums up co-production is: ‘Nothing about us without us.’ This means that if services are being planned for disabled people or others, who need different types of support, then those people should be fully involved. Nothing should be decided without the people effected by the decisions having their say. 

Why I am performing at SCIE’s Co-production Festival

I am really looking forward to performing at SCIE’s Co-production festival in Camden on 5th July.  The audience will be mainly people who use services and carers; from disabled people to people with mental health issues, older people, people with learning difficulties and young people who have been through the care system.  It’s not often that I perform in front of such a diverse range of people. 

For me this is personal

I grew up often being talked down to by medical professionals. Even as a teenager, doctors would talk directly to my mum about my needs while I would sit, looking awkwardly at the floor, feeling like a giant gooseberry. My mum always politely urged the person to interact with me instead, so they would turn to me, nervously smiling and nodding, before adopting a slightly forced cheeriness to hide their discomfort. 

I used to come away feeling frustrated at not being treated normally, and often anticipated future meetings with dread. These appointments would leave me feeling disempowered and ignored. Because of this, I am passionate about ensuring people of different abilities have their voices heard, especially when it comes to their care needs. 

Human diversity is a natural part of life, and we should build a society where we not only celebrate difference, but make everyone – no matter what their ability – feel respected and listened to.

Francesca's website >>>

Co-production in later life at the Mental Health Foundation

By Jolie Goodman, Later Life Programmes Lead, the Mental Health Foundation

Women from a Standing Together group at the launch of the book we co-produced with them, "Our ups and downs growing up and getting on - with the Rotherhithe Babes." 

For National Co-Production Week 2017, in leading the Later Life Programmes at the Mental Health Foundation, I’m making the commitment to continue co-producing any work we undertake. 

Our mission at MHF is to help people to thrive through understanding, protecting and sustaining their mental health; to partner and co-produce with communities is one of the six principles of our Thrive initiatives.

How we co-produce work in later life already

I manage the Standing Together Project. With funding from the Big Lottery Fund, we are facilitating 20 self-help groups in extra care and retirement housing schemes to address loneliness and wellbeing. The idea for the Standing Together project came from tenants wanting to join a previous project, which worked only with people with dementia. 

People who participate in Standing Together groups may have a learning disability, experience poor mental health, memory issues and / or be socially isolated.

At my interview for the role of project manager one of the panel had dementia. Three members of the panel were over 50, the age where MHF sees later life beginning.

We also have tenants as members of the project’s Advisory Group, one of whom lives with dementia and has made an impression on other stakeholders. He was frustrated as the group he attended was not being sustained after the six months of MHF staff facilitation and advocated for its continuation. Consequently, someone has been employed to continue the facilitation of that group.

Co-producing the future Development of Later Life Work at MHF

We are currently developing a Welsh version of Standing Together. At the very first planning meeting with partner organisations, tenants attended. Throughout the application, delivery and evaluation of the project, tenants will be central to co-producing the project. 

A database has been set up of people who are interested in co-producing MHF’s later life work. We will be asking people on the list what their priorities are for the future; to inform a new advisory group to co-produce and steer the direction of our work. 

Why co-production is important

Using co-production, to underpin MHF’s preventative public health plans in later life, means that we will continue to facilitate programmes that are both evidence-based and that people will want to access - to improve their quality of life and mental health. 

Filming: co-production is our usual way of working

By Sybil Ah-Mane, Flexible Films

Flexible Films: embracing co-production at every opportunity 

It's been a rewarding but also at times challenging process to work in a co-productive way when producing films. We have been working with SCIE for a number of years and they have systems in place that help this way of working. Things such as making sure that accessibility is a priority when planning meetings and filming; and ensuring there are a good mix of people with different experiences and skills involved and realistic timelines all help the process. 

Working in a co-productive way during filming is fairly simple

It's about making the person being filmed feel in control - and that's achieved by giving them as much information as needed and also the opportunity to ask questions. Just letting them know that they can stop the filming if needed or that they do not have to answer questions - it makes a huge difference. 

I always ask them at the end if there is anything they'd said they do not want in the edit. I will also let them know that they will be able to view the film before it is finalised.

Working with steering groups on editing decisions requires careful planning

It's important that everyone's views are taken on board so it's key to have someone facilitating this. Film is a subjective medium and not everyone will have the same views, so reaching a group consensus can take time. That's why it's important to do it in stages and to have realistic deadlines. We have found that working in a co-productive way has enhanced the filming process and has produced more meaningful films. It has now become our usual way of working!

Flexible films >>>

This is what co-production looks like

By Sharon Allen, Chief Executive, Skills for Care @sharonallensfc 

As I was sitting at our national conference earlier this year, listening to Disability Rights UK Ambassador Sir Bert Massie, Tina Coldham, Chair of SCIE Co-production Committee and TLAP chair Clenton Farquharson, being very clear about what people who need care and support need to think about when recruiting staff, I thought: "This is what co-production looks like".

Sir Bert Massie, Tina Coldham and Clenton Farquharson at the Skills for Care conference 

Their lively and utterly frank discussion was one of the highlights of our conference and in this Co-production Week, a reminder of why we must include the lived experiences of our fellow citizens in everything we do.

It’s something I’ve been committed to throughout my career 

This is because it is obvious to me that if we don’t include the voices and experiences of people who actually use care and support services, we end up doing things that neither work nor are person centred.

One the key drivers in our sector is leadership and leaders like me have to model in our organisations, that co-production is not an optional extra.  I'm fortunate that colleagues in Skills for Care get this and we work together to make it happen.

Watch Sharon's Co-production Commitment >>>

A great example of co-production is our information hub 

This is designed for individual employers and came out of a sector roundtable event. A smart idea, driven from day one by individual employers who provided invaluable insight and experience when the specification for this hub was being developed. They continued to guide and advise the project all the way through and in 2016/17 there were more than 40,000 page views on the hub.

Our Employing Personal Assistants toolkit was another project co-produced with employers. We worked with members of People Hub - the personal health budgetsnetwork - to ensure this resource was equally relevant to holders of Personal Health Budgets. The toolkit has proved popular because it is fit for purpose with 6066 people accessing the toolkit and 16000 page views.

Underpinning this was the creation and implementation of a participation policy so people offering their expertise are appropriately supported and reimbursed as no one should be out of pocket when they support co-production.

Our recently published autism guides were co-produced 

They were co-produced with people with lived experience so they were able to shape guides that could actually have an impact. Some of that co-production group also made videos to increase the awareness and understanding of autism which can be viewed here. 

More recently we had a representative from West of England Centre for Inclusive Living on our Adult Care Trailblazer group, which has done some brilliant work in creating the new apprenticeship standards for our sector.

These examples are illustrations that we are making progress and I am also aware there is more we can and must do.

That’s why I’m making a pledge this week to continue to drive our co-production work forward. Not only is it the right thing to do, it makes sense if we want to create products and services that actually make a difference.

Community cooperation at Stockport Mencap

By Dr Lynn Sbaih, Director, Give2Gain Community

I want to tell you about how some great small-scale projects reveal how co-production is so vital to successful community engagement. 

The Give2Gain Community Interest Company, in Stockport, grew out of a Community Timebank. Over the past three years we have been involved in co-production work with small business owners, local community organisations​ and community groups:

• Supporting and enabling them, via community events and conversations, to recognise their talents, 
• Supporting the to help each other 
• Supporting them to develop mutually supportive relationships.

We now have an active Give2Gain Community that continues to have co-production as the foundation for its local networks and partnerships of help. To illustrate this, a project that started within the Community Timebank and which continues to grow and flourish today, is one with Stockport Mencap. 

Over the last couple of years, local people have come together 

...to update and maintain the building and garden. The range of people involved has been quite diverse and has included young people with learning disabilities, and their support workers.

Feedback, from those involved in this project, has been that they have found new friends, gained confidence and learnt new skills. They have painted walls, improved the lighting, replaced radiator covers, replaced shelves, dug the garden, swept up leaves and made cups of tea, to name just a few things.  The result, so far, is a revitalised building and sensory garden. 

Overall, we can see that this work has played a part in tacking loneliness and isolation 

...by bringing people together. Some people have dipped into the work, on occasions, whilst other have attended regularly. However, for everyone, it has created a structured space for talking and experiencing sharing.

One carer, working with a young disabled person, said: "This is hugely beneficial for our students and has given them a chance to experience work outside of their normal work routines."

The project has helped people, from a diverse range of backgrounds, to discover, and have pride and confidence in, their talents for helping and being helped. This has indeed been a project of community cooperation and co-production: pooling skills, knowledge, experiences and talents to create a welcoming environment for the clients and their carers that use and visit the Stockport Mencap building.

Imagine co-production. You may say Pete's a dreamer...

By Pete Fleischmann, SCIE head of co-production

John Lennon in his famous song Imagine sang: 

‘You may say that I'm a dreamer,

But I'm not the only one
I hope someday you'll join us
And the world will be as one.’

Peace and Love

John Lennon’s vision for a world of peace and love may seem a very long way from our incredible, though struggling health and social care system. But SCIE’s Co-production week gives us the opportunity to step back and try to imagine how different things could be. There is now widespread support for the values and principles of co-production. So if we dare to dream for a while what might a co-produced service look like?

Truly representative boards

Imagine the boards and committees that run our services and organisations becoming properly representative of the communities they serve. Services would be truly owned by the local people they serve and would reflect their needs and aspirations.

Genuine partnerships

Imagine staff who no longer need to think of themselves as the experts with all the answers but instead form genuine partnerships with people using services.

Imagine the experience, skills and knowledge of professionals being equally valued alongside those of users, carers and the wider community. Imagine a workforce which is trained and supported by disabled people, service users and carers. And includes many more people who have used services.  

A flowering of peer support

Imagine a flowering of peer support services, self-help, user-led groups and time banks that give expression to the amazing energy and thirst for change of service users and disabled people of all kinds from people with learning difficulties to young people leaving care.

Imagine services which are integrated and preventative and address the real needs of communities. Imagine a service which takes on the underlying causes of ill health inequality, exclusion, loneliness, stigma, isolation and discrimination. Imagine a service in which users, carers and professionals work together in equal partnerships toward shared goals.

Permission to dream

John Lennon’s song gives us permission to dream and imagine a different world. There’s a long way to go but if co-production week means anything it is an opportunity to dream. To snatch a few brief moments to think about what co-production really means to you.  Lennon also reminds us that he is not the only one dreaming and he invites people to join him. So why not join us and celebrate co-production week 3 – 7^th July see the Co-production Week website for details of how you can contribute. 

The passion of the ‘usual suspects’ paves the way in co-production

A response to Pete Fleischmann's blog about Co-production and Casablanca. 

By Lianne Davies @wheeliepuss

All too often, those of us with lived experience who give our time to help shape the services we use are somewhat dismissed as being unrepresentative and ‘the usual suspects’.  Most of us would be glad to see more people become involved; we are conscious that we need to represent not only ourselves but also fellow users (and non-users) of services.  But please don’t underestimate the value of our passion – it is what makes us turn up again and again and to keep talking, even if we don’t always feel we’re being heard.

The basis of co-production is democracy, empowerment and change. 

Is any of that possible without passion? 

Consider the social movements which have created revolutions in just the last 50 years: black civil rights, LGBTQI, feminism, disability, the working class…  The list goes on.  Could any of their successes have been achieved without the passion of their members?   The movements were instigated by a few ‘usual suspects’ who spoke up and took action.  As their voices were heard, more joined in and the revolutions began. That is how change happens.

Relatively speaking, co-production is still in its infancy (particularly in the statutory sector).  We need the ‘usual suspects’ to stand up for those who are not yet ready to lend their voices.  If we respect and act on the contributions of those with lived experience, we can not only effect change in the services themselves but also create ambassadors for the principle of co-production and involvement.

Most people who participate in involvement projects do so because they are passionate about improving the services they use, for the benefit of all.  There is evidence that the act of becoming involved can be a useful therapeutic tool for the individual themselves (increasing confidence and gaining valuable social and work experience) but this should not be the goal of involvement, more a beneficial side effect.  Empowering service users to direct their passion towards improving our services should be the goal. 

If we can show that co-production is an effective approach which provides benefits to all (those who use services, the colleagues who work alongside and the provider organisations themselves) then we can encourage more people to get involved.  The passion of the ‘usual suspects’ paves the way and allows others to follow.