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. 

Co-production in Hammersmith and Fulham

By Victoria Brignell. Member of Hammersmith and Fulham’s Disabled People’s Commission

A quiet revolution is currently underway in Hammersmith and Fulham. Most of its residents will be unaware of it so far but behind the scenes much activity is taking place.

Victoria with former Mayor of Hammersmith and Fulham Mercy Umeh 

Steve Cowan, Leader of Hammersmith & Fulham Council, wants to make this West London borough the best place in the country to be disabled. This is a bold ambition in itself but the way the council intends to achieve it is pioneering.

In what is widely believed to be the first initiative of its kind, the council is not just consulting disabled people about what they want but planning to actively involve them in the decision-making processes. This is a concept known as co-production and it is based on the principle that those who use a service are best placed to help design it.

The 2014 Care Act encouraged local authorities to adopt co-production

…but I believe that Hammersmith and Fulham Council is taking it more seriously than most. As a first step, it has set up a Disabled People’s Commission (DPC) to draw up a list of recommendations on how co-production should work in practice.

Made up of ten local disabled people with a range of impairments, the DPC has been meeting since last September and taking evidence from local disabled person-led organisations and co‑production advisors. At the heart of its work is the social model of disability; the idea that people are disabled not by their impairment but by others' attitudes and also by the way society is organised.

The DPC has already carried out a major survey of residents

…and held a public event in the borough to find out disabled people's views and what issues they think need tackling. The message emerging is loud and clear – disabled people believe services could be better and want a greater say in how they are designed and delivered.

More than 60% of the disabled people surveyed believed that their quality of life had gone down and 43% had had difficulty using a service in the last 12 months. Moreover, 46% felt that they could not currently influence decisions that affected them. As one respondent said: "Nobody has ever asked me about who I am or what I need".

DPC member David Isaac tells me: "Change has to happen from top to bottom, from the policymakers and managers right down to the frontline staff. Even with the best intentions, people are making decisions for disabled people, not with them - and that causes more harm than good."

Disabled people are under-represented at all levels of government, from local authorities to Parliament and the Cabinet. While it is vital to increase the number of disabled people elected to public office, this will take many years to achieve. In the meantime, co-production offers a way to incorporate disabled people into the way public bodies carry out their work.

Will co-production ever become a reality in Hammersmith and Fulham?

Early signs are encouraging. In the DPC's survey, over 80% of disabled people said they wanted to participate in council decision-making and 94% of council staff were keen to involve disabled residents more in the delivery of services. DPC members are planning to hold an event in Co-production Week to explore the idea further with Hammersmith and Fulham Council staff.

The DPC is due to publish its final report early in 2018. It is determined to do what it can to make a difference and transform services. However, whether Hammersmith and Fulham Council manages to create a real and enduring partnership between those providing services - and those using them - only time will tell.

Teamwork can be easier said than done. Co-production is 'teamwork with kapow'

By Kath Sutherland, FRSA,  Equalities Consultant, START Ability Services. 

Why is being part of a team such a big deal?

We’re often told that teamwork is the key to success in many areas of life, be that in terms of a thriving business, playing as a football team at the top of the Premier League, or having a successful and happy marriage or partnership.    

The reason for this is that working together as a team is the only way that complimentary, but alternative viewpoints can be brought together to find solutions to the challenges that are faced.  This is especially the case when the barriers towards success are particularly difficult to overcome.  After all, no one person can know about every single aspect of a particular situation or challenging set of circumstances.

Sounds like hard work to me..

You’re right.  Effective and efficient teamwork presents significant problems and can be difficult to get used to at first. The reason for this is that it requires all team members to work together and commit to a common goal.  

This is easier said than done, as in order to do this, team members will need to either have, or acquire, skills in effective communication, mutual respect and the ability to resolve conflicts.  In this way, good teamwork cannot only increase performance, but it can also support teams to develop a stronger shared understanding of how to meet the goal.

Co-production is teamwork with an extra...  

Co-production is a highly effective form of teamwork that also requires these attributes.  So, in order to bring about innovative thinking to resolve difficulties that arise, co-production needs good communication skills, including the ability to really listen to someone else’s viewpoints. 

Additionally, traditional notions of ‘power’ held by different individuals need to be abolished, in favour of a belief that everyone has something valuable to contribute. 

Furthermore, everyone is given equal opportunity to contribute, as any barriers to access that they might face are addressed and removed.  In this way, all viewpoints can be considered in order to reach the most holistic and appropriate resolution and ‘the common goal’. 

So, is co-production worth the effort?

Co-production can be hard to master, but it results in enormous benefits.  For example, as it involves the team in all aspects of planning, designing, delivering and reviewing services, where team members are rewarded for their contributions, they gain a feeling of increased wellbeing.  

As such, morale and productivity, as well as ingenuity, is significantly increased.  This feeling of wellbeing results in higher quality services that are much more likely to be fit for purpose.  And if people actually want and value the service, you are much more likely to be successful. 


Links 
Start Ability services 
Twitter @StartAbility ILinkedIn I Facebook

Beyond the usual suspects. Co-production and Casablanca

By Pete Fleischmann, SCIE head of co-production 

"Round up the usual suspects". So said Captain Renault, the policeman, played by Claude Rains in the closing moments of Casablanca.

Often professionals I meet through SCIE’s co-production training and consultancy work seem to disagree with Captain Renault.  They want to move beyond the usual suspects.  On the surface this sounds very sensible. They want to involve a broad range of people who use services and carers who are representative of the community. And they want to avoid the small group of people who seem to turn up to everything.

You are too articulate and you know too much

But maybe something else is going on. People who use services and carers are often held to a higher standard of representativeness than professionals. If a GP joins a working group, they are not asked how representative they are of all local GPs. Usually people are pleased that a GP has taken the time to contribute their perspective and expertise.  

Pete Fleischmann

But people who use services and carers may face questions about their representativeness. And in some cases this could be seen as a way of undermining their contributions. They might be questioned about how typical they are of local people and about their ability to consult widely. The sub text to these challenges are might be, ‘You’re not like the people who use my service, you’re too articulate and you know how the system works. The implication being that user groups should not be represented by good speakers or by people who understand the system.

Instead of being acknowledged as a spokesperson for local users and carers they become one of the usual suspects. Is this constant need to move beyond the usual suspects a genuine wish to include a diverse range of people or is it so that the clearly articulated but uncomfortable views of local citizen leaders can then be undermined and dismissed as un-representative?  

Round up the usual suspects

In my view the ideal mix of people to involve in co-production work is a balance between local user and carer leaders plus a wider group of people who are not ‘usual suspects’.  One of SCIE’s co-production principles is Diversity. This means that it is vital not to exclude anyone on the basis of race, gender or sexuality. 

And it’s vital to be proactive about reaching out to seldom heard or marginalised groups and invite them to get involved. Often the usual suspects are very knowledgeable about their community and they may have a good track record of involving seldom heard groups.  So planning some co-production? Then take Captain Renault’s advice and get started by rounding up the usual suspects and start building a beautiful friendship. 

Setting the standard for co-production in #coproweek

By Alison Lowe, Chief Executive, Touchstone (Mental health and wellbeing provider) 

We strive to model all that is great about co-production.  
In 2016, we delivered Leeds’ first ever co-production conference which included contributions from all sectors and - of course – experts-by-experience. We also wrote a blog about the conference for SCIE. 

And on 6th July 2017, we at Touchstone will be holding our second conference in Leeds. This will coincide with SCIE’s Co-production Week and will be jointly run by our partners: Leeds Involving People, Together We Can (Experts by Experience), Leeds West CCG, Leeds and York Mental Health Trust, West Yorkshire Finding Independence and others.

Kitemark 

This time, rather than just auditing what we do well and learning from others, the aspiration is to begin building a quality standard – or kitemark – for co-production, not just for Leeds, but hopefully the whole of the UK.

In 2015/16, Together We Can members were involved in constructing, writing and evaluating a set of mental health “I Statements” against their own experiences. The six “I Statements” were then agreed by the Leeds Mental Health Framework Programme Board. This will be the overarching principles that will inform the delivery of all commissioned mental health services by the clinical commissioning group; and future service improvement and redesign projects. 

“More than a mental health diagnosis” 

The statements set out the values and competencies that will be expected from the commissioned care and support provided:

1. I am more than a mental health diagnosis. Treat me like an individual human being
2. I may rely on family and friends to stay well. Give them support, information and respect
3. I want to be heard and included, regardless of my identity. Offer me accessible and culturally competent support
4. I may be facing more than just a mental health challenge (e.g. Substances including alcohol or a physical condition). Respond to these creatively and without judgement
5. I will know the name of the person responsible for my support. Show me that you are a human being too
6. I have a story to tell. Share information effectively, with my permission, so I don’t have to repeat myself.

These statements will form the basis of our conference discussions on 6th July and will hopefully become the architecture of our future co-production standard.  In time, our vision is that experts-by-experience will be trained to assess organisations and services against the co-produced standards of practice. They will also be paid by them to improve compliance with the expected standard.  We hope that eventually, no organisations working in mental health will be commissioned unless it has, at least level One in co-production, rising to level three for the best performing organisations.  

We know this is a big ask and an even bigger vision.  We think Leeds is up for it and on 6th July, we will find out – please come along too if you fancy an adventure. 

Contact us here >>>