Nothing about us without us

By Anne Collis, PhD student at Bangor University and member of Barod, a Welsh cooperative set up and run by a mix of people with and without learning disabilities. 

The 1990s rallying cry of ‘Nothing about us without us’ was used, and is still used, to highlight that disabled people must be part of any discussion about their lives and services they use. It was born within the context of a powerful ‘them’ and an excluded ‘us’. 

In the world of social care and support, the powerful ‘them’ is often the commissioner, the service provider, sometimes even the frontline worker or family carer. The less powerful ‘us’ is often the disabled person, sometimes the family carer and – perhaps more often than is acknowledged - the frontline worker. 

There are still times that less powerful people need to shout to those in power that ‘they’ must do nothing about ‘us’ without ‘us’.  If you find yourself needing to do this, then whatever the context or activity, it should not be badged as ‘co-production’. 

Co-production makes us all ‘us’, and leaves no space for a ‘them’. It achieves this by all of us sharing power and accountability.  Our rallying cry is “Nothing about any of us, without all of us”. Becoming ‘us’ takes work, discomfort and commitment - but the rewards are immense: 

• ‘us’ is not just people who use health, care and support services
• ‘us’ is not just family and friends who take on caring roles
• ‘us’ is not just members of the public, citizens or tax payers
• ‘us’ is not just the people who commission and run services
• ‘us’ is not just the people who work in services.
  

Try this quick check. Pick a local situation. Run through these five interest groups in turn and try imagining someone from each group insisting ‘Nothing about us without us’. When that feels equally comfortable coming from the mouths of anyone – that’s when you’ve cracked co-production. That’s when you’ve become an ‘us’ without a ‘them’. 

Co-production and social housing

By Epiphany Kidd, Independent Living Services Development Manager, Yorkshire Housing

Working with people to design and improve services – co-production - is something that has a long history in the social housing sector. However, it’s been done in piecemeal fashion – informed by a grass roots approach that embodies the very creation of Housing Associations. 

We are working on two key projects at the moment. One is reviewing the whole dining experience in our Extra Care schemes to ensure it is what our customers want, the other is working with our customers in our Sheltered Housing Schemes to find out what they value from our service and involving them in service improvement 

What does this look like in reality?

For the Extra Care Schemes we have held our initial get together with people. How did co-production principles inform this? Well, we didn't set the agenda; we asked people what they wanted to discuss and facilitated this through small workshops. 

• We had a 'magical ingredient' card for them to pop into a casserole pot to say what the most important thing was to them about eating their meal. We asked them to write a recipe for the perfect meal 
• We asked them to let us eat with them and experience the lunch time meal too - and then we all wrote a 'restaurant critic' piece
• We also asked them to walk us through the whole experience using a road map and talk us through 'what must always happen' and 'what must never happen'
• And we asked how they wanted us to feedback from the day, and they want us to go back again in person - so we have booked in those days.

We are making sure we give the same opportunity-to-comment for those that didn't come to the sessions - by asking them to complete a survey which covers exactly the same topics.

What have we learnt so far? 

That people like to talk and that time is of the essence. You need lots of people to facilitate and they need to know what the purpose and principles of the session are. People are different and some love the talking sessions, whereas others don't. 

Most importantly we have found out much more about the people who live in our Extra Care Schemes and have started to build some relationships - and found some great examples of humour. One person wrote that their 'magic ingredient' for the dining experience is: “When I walk in the room!”

Yorkshire Housing >>>

Stockport: we never called it co-production but we’ve been doing it for the past 15 years

By Kieran McMahon, Disability Stockport

A longer version of this blog originally appeared on the Think Local Act Personal website 

One of the major issues when I joined Disability Stockport in 2003 was the state and location of the two buildings used to deliver our services. They were not fully accessible. The Day Centre was in an old clinic at one end of Stockport and the offices / support services were in an old church at the other end. Visiting the latter involved negotiating a chained rear entrance and narrow corridors. This was somewhat ironic as we were the major provider for access advice and awareness training!

Life Chances of Disabled People

When 'Life Chances of disabled people' was published in 2005 the board and members all agreed to follow its 20 year plan to develop a Centre for Independent Living (CIL) in Stockport. After some searching and canvassing of prospective partners, a mortgage funder was found to purchase a suitable building. This started a long search and many, many discussions with members (users), staff, families and designers as to what kind of building and what kind of service we wanted.

Finding a suitable building

Over the next year we identified two possible buildings and listened to the views of everyone on what they wanted. The members, staff, volunteers and families wanted to retain the 'big room' element of the old centre but also wanted more options for activities including cooking and art as well as properly equipped toilet and kitchen areas, which were both lacking. In 2008 we came up with a third option in the centre of Stockport which thankfully everyone liked.

By the time we had a major extension there was a greater confidence with change and the process of co-producing was very straightforward. Members gave their views on the design and purpose, a few things were altered and a few new ideas added.

A further achievement of ours has been to provide an open door policy and encourage visitors into the centre to allow members to speak for themselves in local consultations. Members' reps are elected each year and meet with myself every month to decide on direction and activities as well as looking at any issues that may arise. While we have never specifically called it co-production, this has been our way of doing things for the last 15 years.

Disability Stockport started life as a pressure group in the 1970s. Now it has grown to a medium-sized charity offering services via its Independent Living Centre.

Northern Ireland: The Duneane Collective co-production pilot

By Jenny Hanna, Training Manager, Community Development and Health Network

“You can be part of the solution to some of the problems in your area as opposed to accepting the status quo...it has given me hope…” 
A collective member talking about the co-production pilot. 

The Duneane Collective 

I want to tell you about a socially innovative co-production project here in Northern Ireland. 

Over the last two years my organisation has engaged with 29 people, some of whom had no previous involvement within their community. The group have gone on to establish themselves as the ‘Duneane Collective’. Trust has been built and relationships have developed. This helped much of the community to view the Council differently but also they were able to explore their role within the community and also their relationships to each other. It has shown the Council and other statutory partners that there is great merit in engaging with communities in a different way. 

The Collective have: 
• developed an asset map of their area 
• created a health and wellbeing catalogue
• established a Timebanking working group
• organised a community spirit day
• managed their own budget 
• designed their own logo and vision statement. 

They are currently planning ways in which they can address health and wellbeing issues that they as a group have identified as important for their community. This is just one example of what can happen with the Community Health Champion programme from the Community Development and Health Network. 

Asset mapping. Shifting from: “We don’t have” to: “Look what we do have!” 

Background 

This project has been developed over a period of two years and it has a co-production focus and has relied on 6 principles of co-production throughout its development. Since October 2015 Antrim and Newtownabbey Borough Council through its Joint Working Arrangements Steering Group (JWA) with the Public Health Agency (PHA) and Northern Health and Social Care Trust (NHSCT) and the Northern Health and Social Care Board (NHSCB) have been investing in a co-production pilot in Toomebridge. It has been:

• recognising people as assets
• building on people’s existing capabilities
• promoting mutuality and reciprocity 
• developing peer networks 
• breaking down barriers between professionals and recipients
• facilitating rather than delivering.  

About us

The Duneane project has been a very exciting opportunity to work in partnership with Antrim and Newtownabbey Borough Council and people from the Toomebridge area in Co. Antrim. Community Development and Health Network (CDHN) is Northern Ireland’s leading organisation working to empower communities, improve health and wellbeing and reduce health inequalities.

For more information on this please contact jennyhanna@cdhn.org or Alison.Briggs@antrimandnewtownabbey.gov.uk

Co-production and the mental health survivor movement

By Patrick Wood, trainer and consultant 

The mental health survivor movement has a proud history of standing up for the rights of people who have been subject to mental health system oppression. Over the years, survivors have engaged in separatist action in defence of their collective interests but at the same time they have recognised the value of working alongside allies in the form of mental health workers who have a similar interest in doing what they can to ensure that support for people experiencing distress is grounded in their needs and reflects their wishes.

The modern survivor movement began in the mid-1980s

Survivors Speak Out was formed in 1986, as was Mindlink, and the National Advocacy Network Steering Group was established in 1990 and became UKAN three years later. All three organisations were resolutely survivor led but SSO and UKAN offered opportunities for allies who supported their aims and Mindlink was embedded within the national mental health charity Mind.  The late 1980s also saw the beginnings of Asylum, the magazine for democratic psychiatry, and the Hearing Voices Network, which involved voice hearers, academics and radical mental health professionals.  

The nature of the survivor movement has changed in recent years

There seems to have been a retreat from collective action and a growth in the influence of individual survivors working in association with mainstream organisations. However, the kind of joint working undertaken by SSO, Mindlink and UKAN continues in certain areas, as witnessed by NSUN's involvement in the Mental Health Taskforce's Five Year Forward View for Mental Health.

Co-production is about people who use services and carers working in equal partnership with professionals. Someone needs to take the lead in opening up the possibility of these partnerships and something that is particularly valuable about the survivor movement is that people with lived experience have taken on this leadership role.

Co-production isn't just about developing services and support

It also involves challenging stigma and discrimination through fully recognising the positive attributes of traditionally marginalised groups and individuals, and the history of the mental health survivor movement provides numerous examples of this principle being put into action.

Patrick's blog >>>

Co-production Week 2017 >>> 

Why I’m glad my idea was rejected. It was co-production in action

By Michael Turner, SCIE Co-production Support Manager

Co-production can be testing. You come up with a bright idea and think you’ve nailed that for something that you’ve been trying to work out for over a year and then wham – you take it to the meeting and it gets hammered and pulled apart.

The Co-production Commitment is a key part of this year’s Co-production Week, 3 – 7 July. It’s a really simple idea – we are just asking organisations and people to commit to doing one or more things to develop co-production in their work.

Pledge / oath / commitment?

But like most things that look simple, they take a lot of work. The idea for the commitment started for last year’s Co-production Week. We all looked the idea of getting people to sign up to say they would do something. But would it be a pledge, a promise or even oath. We went backwards and forwards, at one meeting it be a pledge, then it was a promise, then back to being a pledge.

See other people’s commitments >>>

In the end we decided to make it the subject for the discussion groups at last year’s Co-production Festival. Then we started again: pledge, promise or what?

I thought I had cracked it when I came up with the Co-production Challenge and a great line about not even having to throw a bucket of water over your head to do it.

Shot down in flames

The next steering group meeting came round and no this wasn’t right. But the members kicked things around, wanting to come up with something a bit firmer and stronger, and here we are with the Co-production Commitment.

I’ve had time to now to get over my great idea being rejected. And I know it’s all part of the co-production process, with different ideas being considered, put together and leading to bigger and better things. And the Co-production Commitment is really taking of now and you still don't need a bucket of water to make one, so let us have your commitment >>>.

Team Co-Production

By Kevin Minier, carer. 

Co-production teams are different from many teams as they often consist of people from very diverse backgrounds and experiences.  In this blog I give some tips about how to be an effective member of a co-production team.

Can anybody be a member of a co-production team?

Yes – otherwise it is not co-production!  Membership must represent all stakeholder groups: e.g. experts by experience, professionals, public/local community; additional expertise and skills can be included in a co-opted/advisory capacity.

We all have (unconscious) bias, prejudice, self-interest and to some extent that is why we require a broad spectrum of skills and experience on the co-production team: these views are all important.

Does it come naturally to be a co-production team member?

No – whether you’re a professional or lay member, all need training in co-production team membership skills.

Who is responsible?

Everybody – facilitators need to support a suitable environment and provide suitable training in co-production team skills; professionals and lay members must have the right attitude to co-production; commissioners need to appreciate the benefits of co-production for stakeholders.

What is a suitable environment?

An environment where everybody has the opportunity to contribute with accessibility and methods of communication that ensure inclusion happens.  Every view must be listened to and considered as all viewpoints have the potential to inform the discussion and affect the outcome.

Projects have constraints, such as time, people, funds and buildings, however, the constraints must not drive the co-production process – a blank sheet of paper.  Solutions that are co-produced can be cheaper and require fewer professional resources and often by-pass previously foreseen constraints.

All members need to know that they have been listened to and their involvement has contributed positively to the final solution; that they have enjoyed the experience and would be willing to be involved in future co-production projects.

What is included in suitable training?

A co-production team member must not presume they know everything and must expect to learn something new from the process.  Training is required in new communication methods and ways of working that support inclusion.

Everyone must be focused on achieving the common goal – the optimum solution.  This requires keeping on-topic and assisting the facilitators in covering the material and coming to an acceptable conclusion.

Points of contention need to be progressed outside the meeting and tabled at future meetings if required.