Co-production and mental health: the ‘ideal ward round’ in acute settings

By James Shutt, advocacy service manager and advocate

Times are changing

A question that's bothered me for a long time: could a co-produced project between patients, carers and willing professionals – a real group of ‘outsiders’ – make a tangible difference to the experience of being on an acute mental health ward? Well, I realised it was bothering quite a few other people too.

The “Ideal ward round” project set out to do just this

It brought people with current and recent experience of mental health services, including carers, together with professionals working in and managing those services. We took from the start the meaning of co-production as: "The voluntary efforts of individuals or groups to enhance the quality and/or quantity of services they receive. (Parks et al, 1981*). 

In this spirit, we got all these people together in a room with tea, decades of combined experience, a blank piece of paper and three unwritten rules: 

1. Everyone’s opinion holds the same weight
2. Wherever we go in terms of methodology or outcomes, we decide together 
3. Whatever this turns out to be, it has to make a real difference, especially for patients.

How did this all start? An idea and a conversation, then another conversation. Where did it go? Over two and half years, it included a literature review (ward rounds in mental health settings generally get a bad press!) - plus development of questionnaires for patients, ex-patients, carers and staff, data analysis, findings, focus groups, presentations, recommendations, buy-in from Trust senior managers and now pilots on real life wards and evaluations with a Russell Group University. 

It feels like we’ve come quite far… I feel like I’ve forgotten something… 

Oh yes, and lots and lots of meetings were held in between. And lots of conversations. Some tangential, some experiential, some abstract, but all relevant! And then lots of voting.

And this is the crunch I suppose from our experience 

Co-Production requires voluntary effort, quite a bit of voluntary effort from everyone, which in turn requires little more in essence than patience, trust and a sense of purpose. People have come and gone (and often come back) during the lifetime of the project but all of them claim the same credit. They have come from every pay grade and from a lifetime’s lived experience through to a first-time episode and admission. It has felt at different times frustrating, exhilarating, insurmountable and unstoppable. We continue now with the purpose we started with, and perhaps more importantly, the same rules.

‘The Ideal Ward Round’ started as a project in 2014, with the first meeting set up by James Shutt Jonathan Wright, Involvement Centre Manager for Nottinghamshire Healthcare NHS Foundation Trust. The Ideal Ward Round is due to be piloted by Nottinghamshire Healthcare NHS Foundation Trust in Summer 2017.

*Parks, R. B., Baker, P. C., Kiser, L., Oakerson, R., Ostrom, E., Ostrom, V., Percy, S. L., Vandivort, M. B., Whitaker, G. P. and Wilson, R. (1981), CONSUMERS AS COPRODUCERS OF PUBLIC SERVICES: SOME ECONOMIC AND INSTITUTIONAL CONSIDERATIONS. Policy Studies Journal, 9: 1001–1011. doi:10.1111/j.1541-0072.1981.tb01208.x

All things being equal: co-production and the careful use of language

By Michael Turner, SCIE co-production support manager 

This blog originally appeared on the Department of Health website

One of the great things about writing easy-read documents is that you really have to stop and think about each and every word and exactly what means. For any words that may be difficult to understand or not used very often, and for outright jargon, you have to stop and think and then put them into easy-to-read words.

Equality is one of those words. It’s also one of the four key principles for co-production in SCIE'
guide, Co-production in social care: what it is and how to do it.  And when it came to writing the easy read version of the guide summary, it was an interesting word to think about. (If you want to access one, please email us).

Equality’s not a particularly long word 

...and the meaning is fairly clear at face value. Everyone is equal and that everyone should be treated the same.

But it’s not that simple. Everyone isn't the same. Treating everyone as the same would mean not doing all the important things that you need to do in co-production (and in other things) to make sure you have diversity in your work.

The key thing is not that everyone is the same

...It is that nobody is more important than anyone else. Andrew Cozens - an independent social care and health policy and improvement specialist - makes the point in the Have we got co-production news for you?  film that  supports the guide saying equality means. He says: “Your perspective is equally valued whoever you are in the process; nobody is more important than anybody else.”

The principle of equality is a key foundation for co-production. It is what makes co-production different from previous approaches to working with people who use services and carers, such as participation and involvement.

The principle of equality also means everyone has assets

Knowledge, experience and skills are brought to the co-production effort. Making the most of these assets and working with everyone as equals, is the key to success in co-production.

Achieving this means doing things like developing structures to communicate with everyone who should be part of the co-production process, making sure that everything is accessible and making sure that everyone gets something positive from taking part in co-production. Crucially, equality can only be achieved with a shift in power to people who use services and carers; people are only equal if they have the same amount of power.

SCIE's guide takes readers through the changes that organisations and projects need to make, through a jigsaw model of change management covering culture, structure, practice and review. So that they don't just know what the words mean on the page, but what they mean in action.

What is a Patient Champion?

A conversation between Leanne Winfield, Patient Champion and Pamela Fisher, Principal Lecturer, Health Promotion & Public Health, Leeds Beckett University.

Pamela: Tell me about being a Patient Champion.

Leanne: I am a ‘Patient Champion’ with my local NHS Clinical Commissioning Group (CCG) in Leeds West. A Patient Champion is a member of the public who works with the NHS to ensure that the needs of patients, and the wider public, are considered by staff throughout the commissioning cycle. My particular roles are as a member the Patient Participation Group at my GP surgery, and as a member of the Equality and Inclusion Group at Leeds and York Partnership NHS Foundation Trust. In these roles I aim to promote the needs of all patients, not just my personal viewpoint.

Pamela: Pamela: We are holding seven one-day seminars are being held over two years in collaboration with the Universities of Huddersfield, Oxford (St. Catherine's College) and York. The seminars are helping to develop new ways of working and researching within mental health. The starting point is that co-production should involve authentic power-sharing, and that this requires a fundamental re-imagining of the relationships between service users, carers and professionals. They are run with the Economic and Social Research Council. Is your work in a Leeds also a good example of co-production?

Leanne: The purpose of a Patient Champion is to bring another perspective to discussions, and ensure that relevant engagement work has taken place. With the CCG I have also been involved in producing and delivering some training for other Patient Champions and staff members on the topic of co-production. This was developed with the ethos of co-production, working with staff members on an equal basis, and the process demonstrated a really good example of co-production. People were valued regardless of whether they were experts-by-learning or experts-by-experience. The training was well received, and we will be running it again later in the year.

Pamela: Our seminars have seen a group of diverse stakeholders, who have contributed different forms of expertise, taking part. The starting point for the seminar series has been that all forms of expertise – service user/survivor, professional and academic - should be viewed as equally valuable. I’d imagine it’s unlikely that you would be able to be so effective as a Patient Champion if you were unable to draw on her own experiences as a ‘user’ of mental health services. 

Also from Dr Pamela Fisher: Blog - reimagining Professionalism in mental health: towards co-production

Making the invisible, visible. Co-production in three areas

By Jane Green, Equality, Diversity and Human Rights + Co-production groups member.

After being forced to give up work – I was a professional autism educationalist - due to Ehlers-Danlos Syndrome (EDS), I was amazed at the length of time it took to get diagnosed and receive help.  This was because EDS can be  mis/underdiagnosed and considered a rare condition.  Two other diagnoses followed, one of which is also rare and one I am very familiar with,  as late-diagnosed female ‘autism’. 

Trustee work 

I have been a carer for my eldest son all his life as he presented with various conditions including autism and dyspraxia.  So I wanted to use some of my experience and skills as a carer and autism specialist and was elected to Trustee for Carers Support West Sussex.  Although not well enough to attend all meetings I was delighted to find out that the support meetings were run with the carers, co-producing where they wanted the support groups to go; with the charity providing the structure to facilitate that.

Relating to my EDS I didn’t know anyone with it and during the time I visited hospitals, meetings doctors and physios and similar, this had not been mentioned to me.  So I joined the Ehlers-Danlos UK Support charity.  Unfortunately they are one of the most underfunded and unknown charities with only a handful of employees.  Social media has helped as we can’t always be well enough to move around.  Due to funding issues and knowing that we as EDS sufferers know what we need - and what support is or isn’t around - the charity asked for some of us in each county in the UK to be a volunteer co-ordinator. 

Where are we now? 

This involves disseminating information, especially the new classifications that came out this year, plus raising awareness and supporting others, as well as fundraising.  So we all work together in any way we can, bearing in mind we are all diverse. We make it accessible to everyone, so immobile people can join us online - and everyone benefits from service users to professionals.  Where are we now?  We are working hard with medical practitioners to make this ‘rare’ condition less rare and more supported. 

Whilst ill, I had no pathway, no information, in fact, disbelief at times, and no overall overseer of my EDS condition. This led to me physically breaking down.  I have brought and am bringing this to the notice of the CCG and NHS.  I am delighted that I have now been invited to work on a rheumatology pathway. This is looking at capacity needs, to be a part of a rheumatology group, so that it can be recognised better. We want to see how things can be more effective, more economical in the long run, and more efficient for all. And hopefully a good example of ‘co-production’ in the health sector.

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.