Talking about co-production in Kirklees

 

By Beve Smith, Dulcie Leach, Tamsin Macdonald and Alex Chaplin. 

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Beve Smith is an ex-midwife, has lived experience as a carer and is a member of the Kirklees Co-production Board. Dulcie Leach is retired from educational services, has lived experience as a carer and is also a member of the Kirklees Co-production Board. Alex Chaplin is a Policy Officer at Kirklees Council. Tamsin Macdonald is manager of Kirklees’ Local Area Coordination Programme. 

Tamsin: 2020 was an exciting time because it was when the Council published our Five year Vision for Adult Social Care. Within the vision it says:

"Our vision is about people as active and equal partners in how we work together to co-produce, co-design, co-deliver and co-evaluate care services in Kirklees"

With some support from The Social Care Institute for Excellence (SCIE) we coproduced a plan and decided to try and test and learn through taking a co-productive approach to two projects - Developing an integrated contact centre service for health and care and reviewing our Direct Payments policy. It was through this work Alex and I met Beve and Dulcie and together with many others, we also created a new Coproduction Board.

Dulcie: There was a wide breadth of people when we met at the beginning. We didn’t know each other and some of us were quite hesitant. Through some long conversations, we started to realise that we all had shared stories and experiences. We were wondering if we would be listened to and truly heard. Some people said “we’ve been here before and it didn’t work out”. We had lots of conversations to unpick this at the beginning, questioning if we would ever see the fruits of our labour.

Tamsin: As council officers, some of us also felt hesitant. We didn’t know what the outcome was going to be and we couldn’t predict the timelines. That can be quite a scary space for people to step in to, I think.

Alex: One thing I’m really proud of is that we have come past that now and are starting to see our coproduction journey move into the next phase with the review of the Direct Payments policy. We now have all the documents signed off and we are beginning the work of embedding this new improved version with training and things like that.

Tamsin: We’re all really hopeful that ultimately this will lead to more people across Kirklees receiving a Direct Payment that helps them achieve their vision of a good life, feel more independent and in control.   

Dulcie: Some people think that when people get together, they are going to ask for heaven and earth or make unreasonable demands. In the coproduced work that we’ve been involved in, we’ve found that all people really want in terms of their care and support are the things that anyone would want to live a good and normal life. To be a part of community, have friendships and good relationships.

Beve: We know we’re getting it right when it feels like a meeting of equals. We’ve all been kept in the loop all the way through and feel that we have truly participated in the process. We talk about power sharing a lot and this is what it feels like. Moving from a sense that things are being done to us, to a place where we are all moving together in the same direction. We’re starting a movement. It feels like being a part of the change we want to see.

Dulcie: We have lots of things we can be proud of. We might not always agree with each other, but we appreciate what each other’s strengths are and have respect for each other.

Tamsin: It’s about getting there in a steady way where we all feel like we are a part of something. Everyone has something to offer, it is just a matter of working out ways that people can contribute. That’s why it’s so important to get to know each other, learn about each other, and share our gifts with each other.

Beve: It’s not actually as radical as it seems. It is radical in terms of what can be achieved but it’s not as hard as we thought it would be.

Alex: It’s definitely worthwhile doing. It just takes a leap of faith, quite a bit of confidence and most importantly… a lot of time! But what you come out with at the end is really invaluable.

 

ActEarly Co-production Strategy: Nothing About Us Without Us

By Shahid Islam, Senior Research Fellow, ActEarly – Bradford Institute for Health Research - @shahid_islam - and Dr Alexandra Albert, Senior Research Fellow, ActEarly – University College London -  @bun81

There are very few things on which everyone vehemently agrees, but co-production as a force for good, is certainly one that attracts mass support.  

Co-production is not new, it has been around since the 1970s, but only in recent decades we have seen it propel in prominence towards something that can be achieved and delivered.   In practice, co-production is an answer to the question of how to mobilise civil society by using the public services infrastructure to deliver efficient services that are reflective of people’s needs. But to move co-production from a case of marginal experimentation towards the standard way of getting things done requires effort and direction. 

Our ActEarly programme has placed co-production as a central feature of how we plan on getting things done.  This is not only because we believe in the democratic and egalitarian values that stem from co-production (as desirable as they are) but because any attempt to deliver our programme will struggle if communities are not involved in a co-productive way.

ActEarly is ambitious; our long-term vision is to promote a healthier and fairer future for children living in deprived areas through a focus on improving environments that influence health and life chances. This moves away from traditional forms of research which focusses on biological models of treatment towards upstream prevention with a logic that is best described by Desmond Tutu where he once famously said  – 'There comes a point where we need to stop just pulling people out of the river. We need to go upstream and find out why they're falling in’. 

The values of ActEarly and Co-production appear to have natural fit but the question of how to make this work in practice may not be as straightforward as fitting hand-in-glove.  To this end we have drawn up a strategy using the Appreciative Inquiry methodology to explore how we can make this work in an effective and inclusive way.  Our strategy embodies the values of Co-production and ActEarly as it was delivered using an Asset Based Community Development approach.

We found that co-production is underpinned by three values and these need to be operationalised through nine guiding principles.  The diagram below depicts the values as pillars and the principles as building blocks. You can access the co-production strategy here and read all about ActEarly here. 

Co-production at the RIX Centre

 By Ajay Choksi, Gosia Kwiatkowska and Andy Minnion. RIX Research & Media 

We are a Research and Development Centre with a mission to improve the lives of people with learning disabilities through effective use of digital and multi-media technologies.

Co-production and inclusion are at the heart of the RIX Centre and our RIX software is co-developed in partnership with people with learning disabilities, their families and professionals. We use easy multimedia authoring tools to enable people of all abilities and communication preferences to participate in the digital world.

RIX Wikis ensure that people’s voices are heard and that their views and aspirations are understood - a RIX Wiki is an easy-to-use accessible website that uses multimedia to capture what is important to a person. Together with Multi Me we have created the RIX Multi Me toolkit to help people with learning disabilities plan, set goals and stay connected. 

RIX Wikis in Camden

Wikis are used in two distinct ways in Camden, both of which use a co-production approach.

Personal Wikis are produced by keyworkers alongside people with learning disabilities and their families. Together they design and capture content for a digital About Me which can then be used to make sure new staff get to know the person well before working with them.

Wikis are also used in Camden to host accessible information about services and activities.

Much of the content for these Wikis is co-produced by Camden’s Easier Info team and people with learning disabilities. The Easier Info team also works closely with local advocacy groups to ensure that all content is easy to understand. Many of the images used in Camden’s Wiki portal are co-produced with local people with learning disabilities as part of their Photosymbols modelling work.

The purpleSTARS

At RIX we ensure that co-production informs a range of other inclusive activities. Our purpleSTARS group offers an evaluation and research service to museums and galleries to help them make their spaces more accessible and relevant for people with a range of abilities. The methodology we use in our approach to this work is described in this Inclusive Digital Interactives article.

Here is a virtual walkaround of the purpleSTARS’ recent multisensory display at the Museum of London. Check out the purpleSTARS Wiki to find out more. 

Learning Disabilities Innovation Fund – a new way of thinking about grants

By Vanessa  John, Third Sector Support Manager at Pembrokeshire Association of Voluntary Services. 

Pembrokeshire Associationof Voluntary Services (PAVS) has always had a strong reputation for administering grant schemes to benefit local voluntary groups. Usually run by the traditional process of written applications being assessed by a panel.

Then in 2021 something different happened. With funding from Welsh Government, it was proposed that there must be a different way of delivering services for people with learning disabilities in Carmarthenshire, Ceredigion and Pembrokeshire.   

An innovative grant scheme was developed, completely co-produced with people with learning disabilities, with the West Wales Learning Disabilities Charter at its heart.

The grant priorities are:

• All projects have to be co-devised, produced and delivered by people with learning disabilities
• All projects need to be innovative
• All projects need to specifically take forward the aims of the LD Charter.

PAVS as the administrative lead, worked with Pembrokeshire People First ( an independent charity run by and for people with learning disabilities www.pembrokeshirepeople1st.org.uk) and the Dream Team ( a group of people with LD who represent people with LD) to develop the grant scheme.  

So, what has been different?  

• Everything was written in easy-to-read format…and in Welsh
• All applications had to be submitted in easy read – a challenge for some organisations
• A short film was required to highlight the need for the project, and that people with LD were involved 
• All the funding decisions were made by the Dream Team panel (who had received training about sitting on a grant panel)
• Covid restrictions have meant the entire process has been held virtually – a steep learning curve for everyone!

All the funding decisions were made by the Dream Team panel (who had received training about sitting on a grant panel)

Covid restrictions meant the entire process was held virtually – a steep learning curve for everyone!

The result

Twelve projects were funded across the region to run innovative projects to support people with LD, such as easy to read bus timetables; bespoke fitness classes; setting up a shop; IT kit and creative productions such as these.

Take 10 minutes to view these short films – guaranteed to make you smile:

Arts Care -  ‘Cabaret’ - https://youtu.be/V-nyxsWgX5A 

WOW Film Festival  - ‘Tweet Us Equally’ - https://youtu.be/99hSGLSPrA4

What’s happening next

• We are producing a Toolkit, so we can share what we have done
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• Other funders and local authorities are interested in delivering their funding in such a co-produced way
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• The second round of the fund has just happened, so watch this space for more fabulous co-produced projects.

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Co-production, heritage and community

By Dr Liz Jones, Commercial Engagement & Research Development Officer, Awen Institute, Swansea University; and Professor Alan Dix, Director, Computational Foundry, Swansea University.  The heritage, culture and history of communities can nurture a sense of belonging, and yet it is also precarious.  Troedrhiwfuwch, in the South Wales valleys, was once a thriving mining village. It was steadily abandoned during the late 20th century, as landslides threatened the village. Two houses and the war memorial are all that are left of Troedrhiwfuwch. Despite having little physicality left to the village, the spirit of the community remains and has been bolstered by the care and attention that its history has been given by those who want to give its past a voice. Since March 2021, we have been working with the community, helping through coproduction to organise their historical archive, collate and research information and develop digital technologies for preserving the historic legacy of the village for future generations. Coproduction between the village and Swansea University have helped the village in their endeavours to: Begin restoration of the village war memorial and garden Be guided by the community in how to organise their vast archive Design digital methods to showcase and share the archive information so that it can be accessed widely by the community and beyond. As with any co-production exercise, it was important to embed the principles of equality, diversity, accessibility and reciprocity in putting coproduction into action [SCIE15], and there was a period of mutual enculturation.  On the way we built an understanding of what it means to be part of the community.  This was accomplished principally through story-telling, often focused around digital artefacts, or walking the ground itself.   On the other side, the community members built an understanding of the potential of digital technology to help them preserve, organise and disseminate their heritage materials.  This was facilitated by the production of early envisionments using PowerPoint scenarios and paper and card low-fidelity prototypes.  The project embodies ways in which scholarly skill and expertise might be embodied in tools and sustainable practices that enable communities to create and manage their own digital archives.    Currently resources are in development at the early prototype stage but we envisage these will be available for use at some future point. For more information contact: elizabeth.joy.jones@swansea.ac.uk https://aweninstitute.com/blogs/preserving-the-historic-legacy-of-troedrhiwfuwch/ https://aweninstitute.com/blogs/troedrhiwfuwch-remembrance-service-and-open-day/ References: [SCIE15] Co-production in social care: What it is and how to do it.  SCIE Guide 51. Social Care Institute for Excellence. October 2015. https://www.scie.org.uk/publications/guides/guide51/what-is-coproduction/principles-of-coproduction.asp

Co-production within Hampshire NHS Continuing Healthcare (CHC)

By Lara Blake, Senior Project Manager - and Tracey Knatt, Quality Improvement Manager, Hampshire and Isle of Wight Integrated Care Board.

The CHC Co-Production group was established in 2018 with an initial focus on Personal Health Budgets.  The group has evolved over the last four years and has been involved in a number of activities with a positive impact on both staff and individuals involved in the CHC pathway.  

The group consists of those working within the CHC service and those with expert lived experience. 

The groups aims are:

·     To support collaborative working and embed co-production within Hampshire CHC.

·     To work together to achieve more than could be achieved separately ─ sharing knowledge and information ─ improving existing and developing new services.

·     To ensure those with lived experience are involved in service design and decision making.

·     Achieve continuous improvements in the quality of the CHC service through closer working relationships between partners and those with lived experience.  

 

One of the more recent initiatives implemented by the Co-production group is monthly ‘coffee morning’ sessions.

These sessions are an opportunity for staff employed in the CHC service to meet informally with those who have direct lived experience of CHC.  The sessions are mandatory for all new starters and open to the whole workforce.

The sessions have been extremely well received by everyone involved.  Some comments below from staff demonstrate how valuable these sessions are:

“It was so good to speak to the group and really interesting and beneficial to help our practice. The hour went very quickly and it felt like we had only really touched the surface of what we could gain from them”

“Firstly, thank you for arranging these sessions.  There can be no better way to hear the person with lived experience’s voice.  I found the session very insightful and inspiring.”

It was good to hear that there has been a dramatic change in recent years with the PHB process, information sharing etc and I particularly liked the comment that having a PHB enables (them) to be ‘pro-active rather than re-active’ with (their) care and support.

“Thank you very much for sharing!!! I think you are truly amazing”

“Thank you for arranging, I REALLY enjoyed that and would love a continuation”

“Fantastic - so interesting - to hear a personal perspective has been so interesting” “What an inspiration XX is!”

 

Another workstream we are collaborating on is the NHS Continuing Healthcare review process and documentation.

We have a small working group including staff responsible for completing the reviews and two members of our co-production group.  This has given us all a real insight into how the process makes people feel and the preparation they feel they need to do.

It has been invaluable to gain their views on what the documentation means to them and explore whether in the current format; it is fit for purpose?  The answer was no it is not!

We are in the process of developing a form and process that should enable people to feel more comfortable about the process and ensure the framework requirements are met.

From a staff perspective it has been a really valuable experience working with people who use our service and really understanding the impact some processes that we ‘just do’ have on people, and it has inspired them to think differently about their own practice.

 

" As one of the lived experience members of this group, I would like to say how valuable it has been for me to work on an equal basis with a range of staff within CHC.  It is great how we have identified that there are no barriers to change, development and improvement. The only barrier is in our own minds. We have challenged strategies and changed information documents for what we believe is better, making them more effective and easier to understand. There is clearly still work to be done but everyone seems willing to continue this process. I think it would be extremely valuable if this could be duplicated right across the country."

 

Co-Production. The Care Act and the Wellbeing Principle

By John Evans, OBE, Independent Living and Disability Rights activist, and former SCIE Co-production Steering Group Chair

This is the 7th year of the SCIE Co-Production Annual Festival. I would like to draw your attention to some significant connections with Co-Production and the Care Act 2014 and its Well-Being Principle and how these have directly changed the lives of many people with lived experience for the better. 

 

It is not surprising that one of the most comprehensive pieces of disability legislation in the history of social and health care, the Care Act 2014, should be the first piece of legislation to include co-production. Co-production began to have an impact towards the end of the first decade of the new millennium. People with lived experience realised that co-production could have a beneficial effect when working together with different health and social care authorities. I personally did some work on this when I was working for the Department of Health (DH), as it was called then between 2008-2010. I was the DH Specialist on ULO’s (User Led Organisation) and we tried encouraging ULO’s in different regions to work together in partnership on an equal basis with their authorities to co-produce. 

 

This is what the Act says about the effect the individual can have on the co-production process: “when an individual influences the support and services received, or when groups of people get together to influence the way services are designed, commissioned and delivered”. This statement encapsulates everything that the disability movement have been attempting to do for decades. In the beginning when Independent Living was established in the early 1980s, one of its main principles was that “any decision made about a disabled person’s life should directly include them in the process”. This is exactly where the term “nothing about us without us” came into being. It is also where the whole concept of “person centred approach and thinking” came about. 

 

Co-production features in several parts of the guidance in the Care Act and in particular the section on Prevention. It says “in developing and delivering preventative approaches to care and support, local authorities should ensure that individuals are not seen as passive recipients of support services but are able to design care and support, based around the achievements of their goals. Local authorities should actively promote participation in providing interventions that are co-produced with individuals, families, friends and the community.” 

 

I think another important aspect which also appears in the Care Act is the connection with the well-being principle. I firmly believe that co-production has had such a positive and powerful outcome in terms of what can happen when its dynamic is used in designing services and the impact this can have for the individual. I have witnessed so many times how this positive outcome can have beneficial effects on the individuals involved. It can transform the quality of life, health and well-being of the people who are engaged in this process. Co-production can have a definite effect on the principle of well-being. We can experience and measure this by seeing the impact it has on individuals working together in partnership on an equal basis with different authorities. What can be better than this? I have also seen how this can improve the mental well-being of people who might experience mental health issues. This can be further developed and supported with peer support with people who have been through similar states of being. 

 

In conclusion, one can see how these two essential principles of the Care Act, co-production and the well-being principle, can directly enhance an individual’s experience when engaged in designing services based on their own expertise and insight into their conditions along with other like-minded people.