PUTTING PARTICIPATION INTO ACTION

How to support greater use of co-production approaches across Integrated Care Systems

Anna Maria Hosford

Irenie Ekkeshis

Andy Galloway

Contents

New Citizen Project        2

Forewords        3

Ian Holmes, Director for Strategy & Partnerships / Deputy Chief Executive, NHS West Yorkshire Integrated Care Board        3

Paul Gavin, Joint Deputy Director, Equalities & Involvement, People & Communities, NHS England        4

Acknowledgements        5

Introducing the programme        6

Terminology        7

How the process worked        9

Convening question        9

Purpose of this report        10

Introducing our participants and their projects        11

Summary of learnings and recommendations        12

Building understanding        14

Building confidence        17

Building capacity        20

Building commitment        23

People and projects        25

Centre for Positive Ageing: Age UK Wakefield District        25

Reducing Antimicrobial Resistance: West Yorkshire Health & Care Partnership        27

Improving Paediatric Audiology: Leeds Teaching Hospitals NHS Trust        30

Life After Stroke: West Yorkshire & Harrogate Integrated Stroke Delivery Network        32

Building Global Partnerships: West Yorkshire Health & Care Partnership        35

Tools and techniques        37

Summary of tools and techniques        38

Reflections from participants        39

Closing reflections        41

An invitation from New Citizen Project        43

Useful co-production resources        43

Appendices        44

Appendix 1A: Wakefield District Centre for Positive Ageing - Example Long Workshop Plan        44

Appendix 1B: Wakefield District Centre for Positive Ageing - Example short workshop plan        46

Appendix 2: Improving Paediatric Audiology - Conversation menu, recruitment process & sensemaking guidance        47

Appendix 3A: Life After Stroke - Initial workshop agenda summary & outputs        49

Appendix 3B: Life After Stroke - Storytelling worked example        50

New Citizen Project

New Citizen Project is a strategy and innovation company with expertise in participation and involvement.

We inspire and equip organisations to involve people in their work as Citizens, rather than Consumers; building belief, skills and confidence in engagement, co-design and co-production.

We have worked across the health and care sector, with both statutory care providers and voluntary, community and social enterprise (VCSE) organisations, on how to involve people with lived experience in the design and delivery of health and care.

Aligned with the 2022 Health and Care Act, we believe wholeheartedly in the importance of working with people and communities to create better outcomes for everyone, and in the importance of joining up approaches between statutory providers and VCSE organisations.

Our work is rooted in a shift we see across society, and a choice of three futures: Subject, Consumer or Citizen. We call this the Citizen Shift.

'This is the #CitizenShift', New Citizen Project, 2015

Forewords

Ian Holmes, Director for Strategy & Partnerships / Deputy Chief Executive, NHS West Yorkshire Integrated Care Board

The West Yorkshire Health and Care Partnership has a long history of working together rooted in our principles of subsidiarity, working as equal partners and making decisions as close to our communities as possible. We believe working together is essential to improving health outcomes, which is why we have developed our West Yorkshire Co-Production Principles, recognising that co-production is an equal partnership, genuine and sincere, is open to all, and is important.

With Integrated Care Systems becoming statutory in 2022, we want to challenge ourselves on what a systems approach to co-production looks and feels like when working:

• with people, neighbourhoods and communities
• holistically across health and care organisations
• in and across our places (Bradford District & Craven, Calderdale, Kirklees, Leeds and Wakefield)
• regionally as a West Yorkshire Health and Care Partnership

We know that it is about building together on what we already know:

• that people experience health and care as a system so it is fundamental that organisations co-produce as a true partnership
• that we embrace the unique skills and expertise from across our communities, organisations, particularly our diverse and vibrant VCSE sector, and places - sharing power, authority, accountability, and resources
• that inequity exists between people and organisations and that we recognise and strive to mitigate against this together.

As our work with New Citizen Project shows, co-production is not easy, and the key is people. Building on our West Yorkshire Co-Production Principles, we will explore the practical steps outlined in this report so our people, staff and volunteers can feel empowered to take a step further on their journey of co-production.

Paul Gavin, Joint Deputy Director, Equalities & Involvement, People & Communities, NHS England

A question I routinely find myself asking is “should the ICB be facilitating and coordinating public involvement activity?”

This is framed against a sense that it is for Neighbourhood and Place to lead, facilitate and coordinate how they connect with their communities, giving the ICB the role of supporting them in drawing learning and insight out to ICB level. For this to happen successfully (and routinely), the paradigm needs to shift to an asset-based approach that starts with people and communities self-identifying formal and informal associations, networks, and extended families that are already looking for solutions to community issues. Progressive systems like West Yorkshire Health & Care Partnership are actively working on building strategies that fit this blueprint.

This report, detailing their work with New Citizen Project, the NHS Leadership Academy and NHS England gives a blueprint for others who are at the start of their journey. I commend this report and see it as essential reading for systems looking to shift their own paradigms and use every asset they have to deliver equitable, improved outcomes for its people and communities.

Acknowledgements

We would like to thank our colleagues at the West Yorkshire Health & Care Partnership, NHS Leadership Academy North East & Yorkshire, and NHS England, for their support throughout this programme, as well as our participants for all their contributions and commitment throughout.

We would also particularly like to thank the Power of Communities Programme, the VCSE Strategic Alliance at West Yorkshire Health & Care Partnership, for working with us to enable an innovative exploration of co-production. This report contributes to evidence that an embedded and empowered VCSE Alliance can be a key enabler for working more effectively together as an Integrated Care System, and more meaningfully with people and communities.

We’re pleased to share this report as a culmination of the work so far, and look forward to continuing to support the health and care system in future.

Introducing the programme

Over the past year, New Citizen Project has been working with five health and care teams across West Yorkshire, in partnership with the West Yorkshire Health and Care Partnership, NHS Leadership Academy North East & Yorkshire and NHS England, exploring what it takes for an Integrated Care Board (ICB) and the wider Integrated Care System (ICS) to support and enable greater use of co-production approaches.

Through a series of workshops, individual and peer coaching, the teams were equipped with a range of tools and methodologies. The programme resulted in teams taking participatory approaches to a variety of health and care projects - from service redesign, to capital projects, to reducing health inequities - pooling learning and supporting each other along the way.

In this report, we share more about:

• the projects that have been undertaken as part of this work;
• our collective learnings on what people working across health and care need in order to adopt more participatory approaches, and;
• recommendations for how different organisations in the system might support their staff to work in partnership with people and communities, and across health and care partners.

We believe that in order to address the challenges facing our health and care system, we need to continue on the journey to move beyond the traditional, top-down, approaches that have come before, and create the conditions for more participatory, citizen-led and community powered approaches that are emerging all over the world.

The Health and Care Act 2022 aims to establish a more joined up and collaborative health and care system; not only bringing together the NHS with local government and voluntary, community and social enterprise sector partners but mandating a new approach of working with people and communities. That will only be possible if teams across our Integrated Care Systems are equipped and enabled to think and work together differently through system-wide approaches.

This programme sought to explore the opportunity created with the formation of Integrated Care Systems and Boards, deliberately including voluntary, community and social enterprise (VCSE) organisations as participants and promoting working in partnership as part and parcel of how to achieve impactful co-production. The report highlights the shared challenges experienced in moving towards greater co-production and the need for joined up approaches across the ICS, building upon existing guidance and advice on what it will take for colleagues to be able to do this work meaningfully and effectively, and to create a health and care system that works for everyone.

Terminology

In this programme, we explored what it would take the health and care system to support greater use of participatory approaches. The programme didn’t focus on any one specific methodology or approach. Therefore, throughout this report, different words are used to describe the work our teams did. Where a term is used, it doesn’t necessarily describe a perfect example of that methodology in practice - rather an ambition to move towards greater use of meaningful involvement, engagement, co-design and co-production.

As the NHS England Statutory Guidance describes, these terms often overlap, mean different things to different people, and sometimes have a technical or legal definition too. It’s our belief at New Citizen Project that a more participatory health and care system would utilise all these different forms and flavours of participation in many different ways. We therefore avoid holding one specific methodology or practice in higher regard than another.

Below are some definitions of terms that are used in this report, taken from the Statutory Guidance.

• Inform: Sharing information about proposed changes so people understand what they mean.
• Consult: Asking for people’s opinions on one or more ideas or options.
• Engage: Listening to people to understand issues and discuss ideas for change.
• Co-design: Designing with people and incorporating their ideas into the final approach.
• Co-production: An equal partnership where people with lived and learnt experience work together from start to finish.

Guidance refers to health and care systems as all organisations working to improve people’s physical and mental health, nationally and locally, including the NHS, local authorities, social care providers, and voluntary, community and social enterprise (VCSE) organisations.

Integrated care systems (ICSs) are partnerships of health and care organisations that come together to plan and deliver joined up services, and to improve the health of people who live and work in their area. Each ICS consists of an:

• Integrated care board (ICB): a statutory organisation that brings the NHS together locally to improve population health and care.
• Integrated care partnership (ICP): a statutory committee (established by the ICB and relevant local authorities) that is a broad alliance of organisations and representatives concerned with improving the care, health and wellbeing of the population.
• ICSs also include place-based partnerships and provider collaboratives.

If you’d like to find out more about any of the terms above, check out NHS England’s Working in partnership with people and communities Statutory Guidance and FutureLearn course.

From the NHS England statutory guidance: working in partnership with people and communities (2022)

How the process worked

The programme was based around Action Learning - with each team identifying an area of work and taking steps within that to engage with patients, communities or partners in ways that went beyond informing or consulting, towards meaningful engagement, co-design or co-production.

Through a series of five workshops, participants were introduced to a set of tools such as the Design Council’s Double Diamond and New Citizen Project’s Participatory Strategy Map, to help structure their participatory projects. Teams were also immersed in facilitation and collective learning techniques, such as Action Learning Sets and peer coaching. Earlier sessions focussed on helping teams to define a ‘question’ and then design a process to explore it alongside people, communities and with colleagues from across different sectors, whilst latter workshops aimed to help participants make sense of what was coming up through their project, share their learning, and plan their next steps.

The programme was designed so that participants could join from different starting points, and move at the pace their circumstances allowed. This meant we had to adapt throughout. Extra workshops, online sessions and coaching calls were arranged as needed to respond to what came up for participants. The whole programme even extended by four months to enable teams to make vital progress in the latter part of the process.

Convening question

Purpose of this report

The purpose of bringing together five different teams, working in different contexts was to pool learnings and gain understanding on what’s needed to support greater co-design and co-production.

Introducing our participants and their projects

Throughout the programme, and supported by the ICB’s VCSE Strategic Alliance - Power of Communities - we worked with a fantastic group of individuals and teams from across the ICS, collaborating on a range of health and care challenges and projects.

Participants brought their own unique experiences, perspectives and ambitions to the programme. You’ll find their learnings dotted throughout the report, and in more detail as part of the People and Projects section. We’d like to thank everyone for their contributions to the programme, and for agreeing to share their experiences with you via this report.

Summary of learnings and recommendations

With the Health and Care Act 2022 and the creation of Integrated Care Systems (ICSs) there is now an increased focus on working with people and communities on the design and delivery of health and care. New statutory guidance makes ‘public involvement’ a legal duty for Integrated Care Boards (ICBs), NHS Trusts and Foundation Trusts, with an emphasis on senior leaders to:

• Understand and act on what matters to people;
• Demonstrate how their organisations meet the legal duties to involve people;
• Work with partners to put people at the centre of everything they do;
• Ensure there are resources available for their organisations to do this work effectively, and;
• Spend time personally listening to and understanding their local communities.

Yet, for those working in health and care who already are, or are seeking to work with people and communities, and across sectors in deeper and more equitable ways, it can still feel like you are working against the status quo, with a number of practical and cultural hurdles to overcome.

Throughout this programme we reflected on the shared challenges our participants faced and what support was needed, or would have been even more helpful. Purposefully, the individual projects our teams worked on had different remits, communities and sectors to work with so we could fully explore what it takes to support co-production in the context of an Integrated Care System. While they were diverse, there were clear themes for what people needed in order to start taking and sustaining more participatory approaches.

In this report we set out our learnings in these four key areas, including potential barriers, what those working in the health and care sector need to work more deeply with people and communities and what practical steps ICBs and the wider ICS can take in order to support their teams to work in this way.

These findings and recommendations have come directly from the experiences of participants in the programme and members of the team at the West Yorkshire Integrated Care Board.

See the table for a summary of each theme. Read on to explore each in more detail, and find out more about the experiences of the teams that contributed to these lessons.

In order to work more meaningfully with people and communities…

Building understanding

For many of the teams, participating in this programme brought them a deeper understanding of how co-design and co-production differs from consultation and what it can mean in the context of working in an Integrated Care System. Teams shared experiences of how, once they started working with people, communities and with colleagues from across sectors, the outputs and outcomes they reached went far beyond their preconceptions.

A fundamental learning from this programme is the importance of understanding co-production as a process of building solutions with people, rather than bringing pre-formed ideas for feedback.

This presents a challenge to the health and care system as while this is understood in theory, it can be difficult to overcome a framing of health and care as a service and the feeling that practitioners - as service providers - should assume responsibility for having the solutions. To allow for solutions to emerge from the work we do with people and communities, it will be important to build understanding about how co-design and co-production differs from consultation, as well as the corresponding principles and practices to enable more emergent ways of working.

“In the NHS we traditionally run things, we have the idea and we’re looking for buy-in… But co-production isn’t buy-in; it’s developing an idea and understanding an issue with people from the beginning. That’s a very different way of working.”

Alongside what we perceive as co-production, there was increased understanding from participating teams on the nature of co-production as a longer and not always linear approach.

To enable more co-design and co-production of health and care it is essential for both practitioners and senior leaders to know from the outset that deeper forms of participation take more time in building relationships and holding conversations.

An essential counterbalance to the point above is understanding and communicating the multifaceted value that working with people and communities brings. This is important for securing the initial engagement and sustained commitment of colleagues to work in this way.

“I need to become more confident with bringing the [co-production] approach to colleagues and saying ‘let’s go back to the start’. To be able to share why and how to do that.”

“It was really helpful for people to feel like they were doing something bigger than where they came from… ‘I’m doing something that goes beyond where I work in Calderdale’, or ‘this will help people who will go through what I’ve been through’.”

Consistently communicating a shared objective and the impact they could have together created sustained participation in the group. What’s more, having worked together on the idea of producing a directory of stroke services, participants from across the health and care system and people with lived experience were then happy to help shoulder responsibility for making it happen. In other words, co-production can generate people power, not only for the design of health and social care but its delivery too.

In building understanding…

Building confidence

Working with people on deeper forms of participation is not yet standard practice, and practitioners understandably need to build their confidence in how to hold these processes and facilitate deeper conversations.

One of our hypotheses for this process was that whilst there are lots of principles to support the adoption of co-production in the health and care system (see: Co-production in ActEarly: Nothing About Us Without Us and NHS England’s Working in partnership with people and communities), there are fewer guiding processes to turn to. So, part of supporting the teams in this programme was to provide a structure for how you might approach deeper forms of engagement, using the Design Council’s Double Diamond model and a number of accompanying techniques to support the different stages of that process, from insight gathering and sensemaking to idea generation and delivery.

We found that participants valued having a guiding structure, as it helped build confidence in what they were setting out to achieve and where they were in the process, but that there also needs to be a variety of underlying tools and techniques that can flex to different contexts. The nature of engagement will differ from team to team and project to project, and therefore teams need a starting structure and flexible techniques - rather than a one size fits all - that reflect the often emergent nature of working in co-productive ways.

“It’s getting confidence in just knowing that you now know the process well enough to not have to stick to the absolute rigid rules.”

A further barrier that teams encountered was feeling reluctant to start working with people until they had perfectly framed what they were asking of people and created the entire process. For those working in health and care - often experts in their field - it can feel deeply uncomfortable to work in more iterative, unpolished ways. As many teams learned, working with VCSE organisations who have trusted relationships with people and communities, can be a helpful way to navigate this challenge.

Case studies of co-production are often presented as linear, shiny processes, but the experience is often much messier. To avoid making perfect the enemy of good, it’s important that people see realistic, ‘true to life’ examples of how others have worked in emergent ways with people and communities that show challenges as well as successes; case studies of how partnerships have been formed by asking questions like: “how might we best work together?” rather than approaching communities with a fully-formed offer or process.

“Taking the first step, getting rid of habits that I have to have something framed and lovely and present it to people - and that is just 30 years of being institutionalised in the NHS. I need to get more confident with that.”

In building confidence…

Building capacity

Working with people and communities on the design and delivery of health and social care requires capacity. This includes resources like the time and budget required to support these processes (i.e. for things like room hire, participant costs, recruitment and outreach), and in the skills required to hold deeper, sustained conversations (i.e. facilitation and active listening).

Several of the teams, particularly those working within the NHS, struggled to secure dedicated time and small amounts of budget to support their co-production work. Teams found creative solutions like recruiting those working on fellowships to support the work and using existing funding around established events to support outreach and build partnerships, but these represented workarounds in a system that is not currently supporting the practical considerations of working more deeply with people and communities.

To support more work of this kind we need commissioners and managers to understand the practical capacity needed to enable this way of working. To make a clear connection between this longer term investment of time and money and generating the relationships needed to create and sustain the most effective care. This would mean making allowance and provision for practitioners’ time, budget and consolidated support on common challenges, like finding and recruiting people with lived experience into co-production processes.  

Alongside practical capacity, there is a need to develop the skills and open mindset to enable deeper engagement with people and communities. For example, it will be important to support practitioners in experiencing and adopting facilitation techniques that support inclusive conversations.

“Relationships - for me that’s what it’s about, that human connection, listening to what matters to people and trying to deliver something important.”

Participants in the programme spoke about their growing understanding of how to facilitate conversations that enabled people to feel comfortable in discussing their lived experience and then using those experiences to generate insights and ideas. They reflected that it had been a learning process to adapt to the ‘constructive uncertainty’ of holding conversations where you didn’t know the answers, and to develop the capacity to bring people into conversations and work through differences of opinion.

“One of my biggest reflections was the importance of how it was facilitated… starting off in a way that people can go ‘Yes, I can do that’, this isn’t too formal, my contributions are welcome.”

“That lack of hierarchy was liberating, it really helped with momentum and everyone having a voice.”

Collectively reflecting on their experiences, participants in the programme spoke about what had helped them to develop their capacity to work with people and communities. This included themes about the importance of having the support of a co-facilitator and having spaces like the one provided through the programme to discuss challenges, make realisations and work through approaches with other practitioners.

To enable working with people and communities at a much greater scale, there’s a clear need to create opportunities for practitioners to experience and practise different facilitation techniques, as well as spaces for support and encouragement, in order to build colleagues’ confidence and capacity across the health and care sector.

“Facilitating groups by yourself is tiring - you can’t look and respond to everyone at once”

In building capacity…

Building commitment

One of our key findings has been how much, despite the stated intention of the Health and Care Act 2022, practitioners who are attempting to work with people and communities still feel like they are fighting against the system, rather than being supported by it.

“I find challenges often come from people outside the [co-production] group - lots of ‘have you tried this?’ or ‘that won’t work’.”

Participants in this programme all mentioned the personal effort it took to implement new ways of working and challenge the status quo; something that was difficult to sustain and tempting to walk away from. Through the programme, participants found that having the encouragement and advice of their peers, together with support and coaching from New Citizen Project (to work through challenges such as participant recruitment, community outreach and facilitation), motivated them to keep going.

“It’s not easy, a Patient and Public Involvement group is quite easy and predictable but this [way of working] is challenging. You might get the questions wrong and all of that is part of the process because it is specific to the people and community you’re working with.”

Beginning early in the programme, we used action learning sets as a way for participants to share challenges, be supported to find solutions through active listening, and to hear relevant experiences from others. This, along with working together in small groups, was one of the ways participants gained support and encouragement from each other.

Alongside peer support, we held coaching calls with participants to hear about their projects and any challenges that were coming up, offering advice, useful examples and relevant tools in response. Participants reflected that both of these outlets were essential to staying motivated and to working through challenges as they occurred.

Beyond encouragement and support, the programme provided accountability. Participants spoke about how sharing their project openly with others provided a helpful sense of ‘I need to keep going with this’, when it would have been easy to push it to one side and focus on the ‘day job’. As participants worked further with people and communities, that sense of accountability was also created through the groups they’d formed and community partners they’d built relationships with.

This combination of peer encouragement, expert support and accountability to peers and partners will be important to helping practitioners start and sustain the hard work of working in deeper, more equitable ways with people and communities.

“If I’d not been on the programme, I’d have probably walked away at the first hurdle.”

In building commitment…

People and projects

Five teams came together in March 2023 to begin this journey. Here we share more about their experiences of taking co-production approaches to a range of challenges within the health and care system, and the projects they undertook. Their stories document the ups and downs of working in new and different ways, often against the grain of business as usual.

Centre for Positive Ageing: Age UK Wakefield District

Team profile

• Helen Morris - Lead Partner Liaison (Bids, Dementia, Frailty)
• Natalie Tarbatt - Director of Assurance and Mental Health
• Mike Holt - Trustee

Where it started

At the beginning of the programme, Age UK Wakefield were kicking off a large capital project; to build a Centre for Positive Ageing. Encouraged by West Yorkshire Health & Care Partnership, they wanted to take a co-production approach to make sure the Centre is genuinely person-centred and can respond to the needs of older people in the area.

The project was in its very early stages, with the team pursuing funding to get it off the ground. Helen, Natalie and Mike came to our first workshop keen to learn approaches and methods to enable older people to meaningfully shape the Centre.

What they did

Drawing on tools like our Participatory Strategy Map and the Design Council’s Double Diamond framework, the team hosted storytelling workshops in different venues around Wakefield. The team developed a plan and trained staff and volunteers to help facilitate the sessions, which drew on people’s experiences of ageing, accessing services and simply ‘what makes things worth doing’. Facilitators helped participants to explore these stories further, and agree on key principles for the Centre to embody.

How it went

The team held four workshops, and whilst uptake was slow, with between one and four people joining each session, the team learned a lot about how the Centre could respond to challenges like transport, wellbeing, health and digital exclusion. For example, it is often assumed that equipping people with digital skills will become less important as more tech-savvy generations retire. However, people shared how in retirement, they often have fewer opportunities to practise these skills, meaning that they can quickly become out of date as technology advances. This encouraged the team to pursue funding to support digital inclusion projects through the Centre itself.

“We got great ideas that we would have never had on our own!”

In addition to the four advertised open sessions, one of the methods that proved successful was reaching out directly to local groups with the offer of holding specific conversations. This gained a lot of interest, and following an enthusiastic meeting with a local dementia group, the team felt it was a valuable way of ensuring that the centre’s design could be informed by a range of experiences.

What they learned

Conversations led to specific ideas for what the Centre could do, but also themes and principles for how it should work. For example, people wanted the Centre to be a space where they could really be listened to, and where their skills and experiences were valued.

“People don’t just want the centre to deliver good services - people want to be actively involved.”

For the organisation, this form of co-production through storytelling was a new approach. There was energy for it, but it required a lot of effort behind the scenes to make sure it could fit in with other pieces of work. The support of the Charity’s board and senior management team was crucial to ensuring the team could take the time they needed.

It was one thing to create a plan, but another to do all the communication, administration, venue visits and training that went along with it. Having staff and volunteers available to support the team with this work was extremely beneficial.

There were barriers to people joining the sessions. The team addressed these where possible, and the experience shone a light on a lack of affordable and accessible transport options, which will be important for the team to consider in ensuring people can access the Centre.

What next?

The team remains committed to co-producing the Centre, and many of the people who’ve joined conversations so far want to stay involved. Along the way, the team plans to take their learnings from the programme into other areas of the charity’s work, embedding more participatory approaches throughout and making co-production part of ‘business as usual’.

Thoughts from New Citizen Project

The work of the Age UK Wakefield team has highlighted that taking a co-production approach is about quality, not just quantity of conversations. The project gained so much from having small-scale conversations and building relationships with a few people and local groups, who will now be in a position to support the next phase of work, and perhaps bring others along with them too.

Reducing Antimicrobial Resistance: West Yorkshire Health & Care Partnership

Team profile

• Sarah Chadwick - Antimicrobial Resistance Programme Manager
• Anna Crowther - NHS England Population Health Fellow & Community Matron
• Marcela Speianu - Senior Clinician, Children and Young Adults’ Diabetes Centre
• Hannah Sowerbutts - Head of Health Protection, Leeds City Council

Where it started

The Antimicrobial Resistance (AMR) team joined the programme with an ambition to work with the Roma community to prevent infections, and ultimately, reduce AMR. This is a particularly pertinent issue for Roma communities who, due to a number of health inequalities, are at an increased risk of infection, and experience extensive barriers to healthcare.

Despite initially feeling like a barrier, the team found that having an overarching ambition rather than a fully-formed plan of how this would work, actually proved to be the right starting point.

“We came in with an ambition, not a project.”

What they did

Restricted by capacity with only Sarah’s role offering (limited) time and resources, the team spent the initial part of the programme trying to understand exactly what the scope of their project was; who they needed to work with and how.

Through an introduction and subsequent conversations with local organisation Connecting Roma, they built a trusted relationship to a point where the team were invited to one of the charity’s ‘Health Days’. Here, they had meaningful conversations with people about how to reduce infection risk, whilst learning from different communities’ experiences of healthcare.

How it went

For a long time in the process, the team felt like they were going round in circles, figuring out what they were going to work on. Yet, reflecting on these early conversations, the team realised that it was what was needed to build trust with Connecting Roma. This ultimately led to them having the opportunity to work with the group on a series of health events which brought together members of the community with health practitioners, music, food and the chance to have open conversations on health needs and barriers.

“It felt like a spaghetti junction, but looking back, we needed to trust the process… Having all those conversations was the work. That’s what built the trust.”

Capacity was a major challenge. From a practical perspective, whilst great work happened in early stages, once Anna came on board as part of the Population Health Fellowship everything could happen much quicker. Alongside this, being part of the programme provided a level of accountability to deliver, but also vital support from other participants.

What they learned

One of the team’s biggest learnings was that they didn’t necessarily need to ‘frame’ their work so much. The act of reaching out to Daniel at Connecting Roma with a genuine offer of working together - instead of asking the charity to deliver something on their behalf - was what made it exciting and worthwhile. Once this happened, others wanted to join in too.

Rather than putting on an event about AMR specifically, the groups worked together to hold conversations about topics that were already on the agenda for Connecting Roma, and also contribute to infection risk - such as smoking, alcohol, hydration and diet. Through these conversations, the AMR team has learned a lot. The new partnership now presents an opportunity to work alongside some of the Roma community to respond to what they're hearing.

“We couldn’t just expect them to fit in with what we wanted to do, we needed to make a real offer to work with them on things that mattered to everyone.”

Through the programme the teams have found a practical format for regularly connecting with the community. Running community events on NHS designated ‘Health Days’ means that there is an available budget for community outreach, and also that it’s more possible to bring multiple providers together and create an offer for the community of a holistic focus on health (rather than attending events on a singular issue). Working with Connecting Roma has led to a format that feels comfortable and inclusive, with music and food creating a setting that enables easier conversations about health challenges and opportunities.

“We was very delighted and grateful for Sarah and Anna supporting us, and attending our health events for the Roma community. The community was very happy to have experts they were able to interact with and ask questions and talk together.” - Daniel Balaz, Connecting Roma Director

“We was meeting lovely people today about the health conditions and about new things now like the pharmacy [Pharmacy First] which is lovely as we can go there not the GP” - Jan Balaz, Roma Community Member

In working with Connecting Roma, the team has gained a deeper understanding of the barriers to Roma communities accessing healthcare, from stigma and marginalisation, to language barriers and cultural awareness. The team has also explored opportunities to address those barriers, for example by using preferred methods of communication and by building understanding of Roma culture across the health system.

“The more we celebrate Roma, Gypsy and Traveller cultures - educating ourselves as professionals - the more this will improve”

What next?

The AMR team is now considering how to share the benefits from this approach with other teams across the sector through a community of practice. They plan to continue working with Connecting Roma, and others in the Roma community, responding together to what emerges through future conversations and events.

The team is confident that the relationships they have built will enable them to invite in other health professionals, and to keep developing upon the format of ‘Health Days’ with the community so they become spaces for ongoing conversation on health challenges and solutions.

“Many of the Roma attendees mentioned how they valued your organisation coming out and working with us as they felt it was significant information they needed as they wasn't aware of many of the factors you shared. We hope we carry on working with you in collaboration and welcome you in more sessions” - Daniel Balaz, Connecting Roma Director

Thoughts from New Citizen Project

Our biggest learning from the work of the AMR team has been around the importance of having a desire to work together and act on a shared ambition, rather than having a fully formed plan. This isn’t easy, especially in a health and care system that trains people to become more and more specialised experts in a field. However, when working with people and communities, it’s often much better to turn up with questions not answers.

Improving Paediatric Audiology: Leeds Teaching Hospitals NHS Trust

Team profile

• Chris Monaghan-Doyle - Audiology Diagnostic Lead & Clinical Scientist, Leeds Teaching Hospitals
• Michelle Foster - Healthcare Scientist and Head of Audiology, Leeds Teaching Hospitals

Where it started

Chris and Michelle joined the programme in clinically demanding roles, where patient participation has traditionally been limited to basic feedback mechanisms. Through the programme, they wanted to work with patients and their families to redesign key parts of the paediatric audiology service, paying particular attention to key life stage transitions, such as from child to young adult. They hoped that a more participatory approach could help the team to identify ways to tailor appointments to meet patients' changing needs, ensuring that patients understand the importance of ongoing appointments for their hearing, and ultimately improving outcomes.

What they did

Through the programme’s early workshops, Chris learned about a range of participatory approaches and methods to engage with his patients on a qualitative level; going beyond just gathering data on attendance into engaging patients on what they valued and needed from appointments as they reach young adulthood.

Working with the New Citizen Project team to create a ‘discussion guide’, Chris and Michelle brought further clinicians into this approach and began speaking with patients at the end of their existing appointments, gathering input on the service’s redesign. Discussions took an appreciative inquiry approach, focussing on what people valued about their appointments, and how this could be developed to help more people get more out of their time in the clinic.

How it went

Throughout the project, the audiology team felt a gravitational pull back towards more established methods of gathering patient feedback such as surveys rather than a conversational approach that allows for establishing rapport and going deeper into needs and barriers.

However, as the team gained more knowledge and experience of some of the tools that were shared as part of the programme, they gradually began to realise the value in more participatory approaches.

“An interesting finding (from conversations) was that people value seeing the same clinician... We found out things that we’d never have known if we’d just done a tick-box survey.”

The main challenge for the team was time. As clinicians, there is only a small amount of time available outside of appointments, and it was very difficult to make progress outside of these restrictions. This meant that whilst the team’s ambition was clearly there, other factors made it very difficult to make meaningful progress towards a co-designed service.

“Having the structure of the programme and the tools has been really helpful. I’ve got more belief in this way of doing things now.”

What they learned

At the start of this programme, there was very little qualitative understanding of how paediatric audiology patients and carers experienced care and how their needs and barriers changed as they grew up. Through the programme, Chris and Michelle established a simple, practical way of talking with patients about what they needed and valued - gaining insights and ideas that could instantly be used to shape care for the better.

A learning for the team was that even in the stretched front line of health and care provision, it is possible to have conversations that start to go beyond data gathering or consultation, into co-designing services.

“Front line services need to be supported to co-design services with their patients, maybe with some non-clinical roles doing the heavy lifting. Stepped incremental approaches could help busy NHS services to start on this journey.”

What next?

After the initial conversations with patients, the aim is to host a group workshop, bringing patients, families and staff together to discuss the service redesign in more depth.

Thoughts from New Citizen Project

Over the course of the programme, we really enjoyed seeing the growth in Chris’s belief in more participatory approaches. The practical way that Chris built a more participatory approach into everyday appointments, shows that tools and methodologies for working with people and communities can be adapted and used by people across the health and care system, regardless of role.

Chris and Michelle had understandable fears that they might not have the resource to act upon what their patients most needed. Yet, their findings from taking a conversational approach, establishing a shared ambition to help young people with their hearing as they grow up, resulted in pragmatic, actionable ideas - not an unfulfillable wishlist.  

Life After Stroke: West Yorkshire & Harrogate Integrated Stroke Delivery Network

Team profile

• Katie Johnson - SQuIRe (Stroke Quality Improvement for Rehabilitation) Project Lead
• Hannah Harris - Project Manager, Long Term Conditions and Personalisation
• Arfan Hussain - Programme Manager (with a focus on the VCSE / Power of Communities), Strategy & Transformation Team

Where it started

When Katie began her role, one of her objectives was to do a co-production project. She didn’t really know what the term meant, but through conversations with various partners she was able to commission a project to redesign the stroke recovery pathway, to encompass life after stroke support based on the lived experiences of stroke survivors and their carers.

With resources secured by the Power of Communities Programme through NHS Leadership Academy North East & Yorkshire, initial workshops were designed and facilitated by New Citizen Project, with support from Katie and other members of the Life After Stroke team, with the aim of building their confidence to hold further conversations in future.

What they did

One recommendation that stemmed from the workshop was to avoid the language of a ‘pathway’ altogether, in the knowledge that stroke recovery is not a linear path from point A to point B. With this insight, and much more, Katie joined the programme to continue working with survivors and carers to co-develop the recovery journey.

Power of Communities and the Integrated Stroke Delivery Network (ISDN) together secured funding from NHS England to continue the work. Following this, Katie and Arfan formed a group, made up of participants from the initial workshops as well as new-joiners (including stroke survivors, clinicians, carers and VCSE representatives) which began meeting once a month. Meetings alternated between online and in-person sessions, which were hosted in different community venues, which has financially supported the VCSE sector.

Resisting the temptation to do things the traditional way - setting the direction and writing the group’s terms of reference before it has even had a chance to meet - Katie and Arfan took a different approach, co-creating a set of agreed ways of working together from the start.

The group shared ambitions for what they wanted to work on together, which was different from what Katie and Arfan had initially planned. This encouraged Katie to reflect on exactly who the group was for. From there, the balance of power shifted, which saw Katie and Arfan facilitate the group to work on what was important to everyone. The resulting project was a directory of local groups and support services, that would help future stroke survivors and their carers navigate their recovery in a more holistic way.

“It highlighted the importance of identifying what to work on together from the start, rather than bringing the group an idea and asking for help.”

How it went

Since the group has formed, they’ve met over 15 times. There are around 30 members but due to its flexible nature, not everyone comes to every meeting. The group has grown over time, with the team seeking to fill gaps in experiences and demographics.

Staff, carers and survivors have all shared how much they’ve valued working across boundaries, with people they never would have otherwise - gaining different perspectives and reaching better decisions. As well as the stroke directory, the group has discussed how to sustain itself in future, to bring in new members as others leave, and ensure that responsibilities don’t fall on too few people.

The group has a relaxed atmosphere, and they strive to make it a welcoming environment for everyone. The success of the group has even led to it absorbing the existing patient forum, which has been around for a long time but doesn’t reflect or meet the needs of the range of people who are affected by stroke.

“In a workplace where people are often identified by their banding, it’s been a refreshing shift away from hierarchy.”

After helping to establish the group, Arfan stepped away to focus on other VCSE sector priorities. During this time, the group slightly lost momentum for a period of time. Katie reflected that it was hard to do everything on her own. Luckily at this stage, Hannah came on board and took on some of the responsibility for the group.

“It was much more enjoyable and fulfilling to work alongside someone else rather than take on all the work myself.”

What they learned

Through the initial workshops with New Citizen Project, Katie noticed the importance of facilitation in enabling everyone to contribute and feel listened to. This was what she wanted to emulate in the group’s meetings.

Members of the group have shared that they’ve enjoyed contributing to something that reaches beyond their immediate locality, and that they want others to have access to more support than perhaps they did. This commitment surpassed expectations, as Katie - who was initially apprehensive about asking people to give up more of their time - was asked by many members of the group for additional tasks to complete between the monthly meetings.

Katie and Hannah found that as well as having each other’s support, their networks have been really helpful; from being able to draw on the expertise of people from across the ICB, to having opportunities to talk about the work on the NHS England podcast and at various events.

“This programme has made me realise there are so many decades-old, wicked problems that exist in the healthcare system, that could be ripe for co-production.”

For Arfan, a key learning was the need to embed co-production in governance and have a clear 'home' for the work - in this case within the ISDN and Power of Communities. This helped the team to secure additional funding and plan for the longer term, whilst holding the funding within a VCSE organisation made it easier to reimburse participant costs.

What next?

The group have now developed over half of the content for their website, ‘All Things Stroke’. Despite Katie moving to another role, the ISDN Manager has sustained the group, and they continue to meet regularly, working collaboratively with a new Project Manager. The website is scheduled for launch on 29th October, to coincide with World Stroke Day, and the team are exploring the possibility of funding a VCSE organisation to maintain it after launch.

The co-production group has proven to be so successful in terms of engagement, contributions, and production that the ISDN took the decision to merge it with its existing Patient and Carer Group, increasing membership in the process.

Although the group is currently focussing on completing the website, they are also exploring potential future projects. The ISDN is committed to ensuring the group continues to grow, supporting and nurturing its development.

Thoughts from New Citizen Project

The Life After Stroke group has shown that co-production doesn’t need to replicate existing ways of working in the NHS, or in other types of large organisations. Whilst formal roles and rigid structures work for some people, the learning from the co-production group is that much more can be achieved when processes are shaped by people, rather than the other way around.

Building Global Partnerships: West Yorkshire Health & Care Partnership

Team profile

• Tim Gill - Programme Manager, Global Partnerships
• Jeanette Barton - Project Support Officer, Global Partnerships
• Richard Nicholson - Project Manager, Global Partnerships

Where it started

The Global Partnerships team brought a different kind of challenge to the programme. Whilst other teams were aiming to work with patients and service users, this team wanted to work more meaningfully with staff, teams and organisations across the ICS.

Specifically, the Global Partnerships team aimed to create an ethical pathway for international recruitment into social care, by working with social care providers and existing members of staff who have been through international recruitment processes.

This project brought together two entirely new approaches: to create an ethical international pathway and all the logistics and planning that would go alongside, and; to meaningfully involve social care providers and staff along the way so that the pathway could be designed based on people’s experiences of international recruitment, ultimately making it more effective.

What they did

The team began by bringing together a group of social care providers, sharing information about the project and gathering interest in being part of a pilot. The team also shared their intention to work with members of staff who have previously been through international recruitment, to help shape the new pathway. This was all captured in a memorandum of understanding that was signed by everyone who joined the project.

Following this kick-off meeting, a steering group formed to help drive forward the creation of the pathway.

How it went

The steering group worked together to set priorities, determine the scale of recruitment and begin considering what support would be needed for a cohort of nurses and senior care workers joining from Kerala, India. Due to UK Home Office immigration policy changes, recruitment was halted as it became difficult for providers to obtain Certificates of Sponsorship.

However, in April 2024 the recruitment process resumed. At the time of writing, the team has held numerous interviews and has offered one nursing post - the new pathway’s first appointment.

What they learned

Initially the project steering group was made up of Care Associations of providers, rather than the providers themselves, meaning the group was less able to identify and reach out to existing international staff who could be part of shaping the pilot. Forming a steering group made up of providers themselves made this much more possible, because as the employers, they were much closer to existing international care staff.

In the first round of interviews, more than 10 nurses and senior care workers were interviewed, but only one job offer was given, as it was felt that many candidates were not well enough prepared. This led the team to work alongside providers to create an interview preparation pack, to be given to candidates ahead of their interviews. As well as information on key role competencies and experience required, this pack includes details on the social care sector, and living and working in West Yorkshire. The pack will be tested with some of the existing international workforce within provider organisations, whose input will help the team to iterate the content before it is shared with candidates for the next round of interviews.

“The Global Partnerships team have taken the time to investigate and understand the social care sector and the challenges for care employers, and have been creative in co-designing ways to overcome these barriers to enable the establishment of ethical care pathways and successful partnerships.” - Rachael Ross, Workforce Lead, Bradford Care Association

What next?

The team is working with local objective structured clinical examination (OSCE) trainers for nurses, as well as language schools, as part of the support for recruits on arrival. In addition, the team will soon be considering accommodation options and other pastoral support, and have met with a local and active VCSE organisation about the possibility of collaborating together on the project.

Thoughts from New Citizen Project

The landscape of the health and social care sector is complex and part of the challenge that the Global Partnerships team faced was finding the right starting point and the right social care providers to engage with. By turning the work of creating a standardised international recruitment pathway into a pilot, they created a way for providers who shared their belief to choose to engage and participate.

It can be difficult to bring together everyone we would like to work with, especially when there are challenges we need to solve in a timely way. Sometimes ‘going where the energy is’ and then leaving the door open for others to join in along the way is a practical way to get started.

Tools and techniques

Through the programme we used the Design Council’s Double Diamond to support participants to think about how they could work with people and communities. It was used both at the start of the process as a way to help participants define the challenge they were working on, and, as we moved through the programme, as a way to reflect on where they were and wanted to go next.

As well as this overarching structure, we worked with a number of tools and techniques to support participants to articulate the question they wanted to work on with people and communities and how they might go through the steps of discovering, defining, developing and delivering in collaborative, participatory ways.

The following represents a summary of the tools and techniques we introduced through the programme, aligned with the Double Diamond. Not all of these tools were used by all participants, and other tools such as surveys and one on one conversations were also used and encouraged.

You can find further examples of how these tools and techniques were used by teams throughout the programme in the appendices.

Summary of tools and techniques

Reflections from participants

It was helpful for participants to have an overarching structure like the Double Diamond to work to and reflect on. It provided a simple way of capturing how they were trying to work with people and communities, separating out the phases of building understanding and developing solutions.

“I like the Double Diamond because it makes it clear that you are creating solutions with people. You don’t have to go in with something from the start, it’s about doing it together.”

Tools like storytelling were challenging to adopt and took practitioners building their facilitation skills, recruiting volunteers and upskilling colleagues. Questions had to be refined over time, and the format of discussions had to be adapted to ensure they worked in different settings. However, the principle of starting a process of co-design or co-production, not by asking “what should we change?” but instead by hearing from people’s experiences, and then from there moving towards informed ideas, is an approach that participants are already starting to take forward into other aspects of their work.

“I liked that [storytelling] stops us going straight into ‘what should the health system do differently?’ and instead starts with experiences, understanding why something has happened and what is important going forward.”

Participants reflected on the power of this way of working to build rapport and establish equity. Conversations became less about them as the ‘professionals’ having all the answers or patients making ‘demands’ to the health system, and more about finding solutions together. They spoke about how taking this kind of dialogic approach enabled them to build confidence in being a facilitator of a conversation, bringing experiences, themes and ideas to the surface, rather than feeling the need to present answers.

“I feel confident taking a few questions into a group, and just allowing people to talk and bring things out - to not have to fill all the gaps of silence.”

Action learning was an important part of the programme. It provided a format for the participants working on different projects with different communities to reflect, make sense of what was coming up for them, and find ways forward. Participants reflected that this was a valuable source of encouragement, support and advice.

“Building in space for reflection, that’s what these have been really good for… Reflection is where the learning comes from.”

While not all of the participants in the programme got to the stage of generating and delivering ideas with people and communities, those that did, recognised the ongoing importance of creative and inclusive facilitation, alongside ways to sustain participation through power sharing and delegation.

The Life After Stroke team spoke about coming to realise that part of co-producing solutions with people is sharing the work of doing, not just thinking. They found that if people were invested in a shared ambition, they were willing to offer their time to make it happen. In sustaining a co-production group, the team found it helpful to keep the purpose of the work front of mind, to agree priorities and delegate work, and to bring in new voices to refresh and reform the group over time.

“I was afraid to ask people to do work between meetings… One of the bits of feedback that people gave us was that they wanted to do work between meetings, they asked us to give them stuff to do!”

Closing reflections

The purpose of this programme has been to support five different teams working across the West Yorkshire Health and Care Partnership to take steps towards working with people and communities that go beyond informing or consulting. It has been fantastic to see participants go from the start of an ambition or challenge, to forming trusted relationships with people and communities, gaining understanding to shape service design and co-producing solutions that could help thousands of people. All while themselves developing the skills, knowledge and appetite to take this approach into the wider work they do.

“I just love this way of working. I think it’s so much better than just working away on your own and presenting your outputs.”

Yet, the fundamental insight from the programme is that people in the health and care sector will need significant support and encouragement to work in deeper and more equitable ways with people and communities; support that is not as readily available as is needed to meet the ambitions of the 2022 Health and Care Act. The experience of participants has highlighted how challenging it can be to work in new ways, especially when met with the practical barriers of securing time and budget, and the cultural hurdles of establishing different processes and ways of facilitating conversations, especially when faced with internal doubt and scepticism.

“How challenging it is - we need to acknowledge that. This isn’t an easy option, it might sound fluffy but it’s not. It’s challenging and lots of the challenge comes from outside of the group - outside of the people and communities you’re working with.”

Given the highly pressurised state of the health and care system, there is a significant risk that working with people and communities gets pushed to the side of the desk or avoided out of the fear that, with a shortage of resource and capacity, health and care providers will be unable to act upon what people most need and value. Or, perhaps, to make working with people and communities feel more manageable, the ways of doing this may become reduced to a few one size fits all approaches (e.g. patient participation groups) that go some of the way but keep all the responsibility, design and delivery of care with existing ‘service providers’.

And yet, the opportunity of co-design and co-production is to flip the perspective of health and care as a service to be delivered to people - with providers holding all the answers and responsibility - into a shared challenge with people and communities bringing ideas and developing solutions; thereby increasing resource and capacity and ultimately, driving better outcomes. It is through building relationships and rapport that we make it more possible to be transparent about the resources available - moving away from placing demands on the system into finding creative ways forward.

As ways of working as an Integrated Care System and Integrated Care Board establish and bed down, there is a real opportunity to create a consistent understanding as to why working with people and communities matters, and to take a coordinated approach to developing staff confidence, capacity and commitment to work in this way. As this report sets out, there are practical steps those working in ICBs and across the ICS can take now to create a system that removes barriers and actively supports working with people and communities to create better health and care.

Our programme has highlighted the importance of building understanding, confidence, commitment and capacity in the people tasked with delivering the work, as well as budget holders and decision makers. Within this, there is a clear role for NHS England, NHS Leadership Academy and other actors in the system, to build on existing guidance, and support ICBs to develop the human, relational structures that will be important to enriching learnings and spreading expertise across the system. What’s more, there’s the opportunity to draw upon the knowledge and expertise of the VCSE sector in building understanding of and relationships with people and communities.

For individuals working in an Integrated Care System looking to work with people and communities, we hope this report serves as encouragement and support. As participants in this programme found, it is not always an easy or quick path, but it is one that opens up understanding they would never have otherwise gained, ideas they would never have had and ways of achieving solutions that would never have been possible.

“What advice would you give to a colleague interested in co-production?”

“Just do it.”

An invitation from New Citizen Project

As this programme comes to an end, we are excited to share the learnings with others within the West Yorkshire Health and Care Partnership, and beyond with other Integrated Care Systems around the country who are interested in supporting greater use of co-production approaches.

Soon, we will be recruiting participants for a new Collaborative Innovation project, bringing together different actors within the system to build understanding, confidence, capacity and commitment for working meaningfully with people and communities. If you’re interested in being part of or funding this kind of opportunity, please get in touch, and sign up to our mailing list to stay updated on future developments.

We’d like to support organisations to put these learnings into action. If you’re a leader in the health and care system, we’d love to discuss how we might work with you and your organisation. Please share the report with any organisations you think would benefit.

You can find out more about New Citizen Project at www.newcitizenproject.com and get in touch with the team at hello@newcitizenproject.com

Appendices

Appendix 1A: Wakefield District Centre for Positive Ageing - Example Long Workshop Plan

Workshop Agenda

“The focus of this workshop is to dig deep into what is important for older people to feel a part of a plan of action. What makes them enthusiastic about contributing to an activity that is important to them. Ultimately, what will make the centre relevant, attractive to and well used by older people?”

Appendix 1B: Wakefield District Centre for Positive Ageing - Example short workshop plan

Discussion guide

Appendix 2: Improving Paediatric Audiology - Conversation menu, recruitment process & sensemaking guidance

Conversation menu

Recruitment process

• Start small - have a couple of conversations post-clinic and see how people respond.
• Explain that you are trying out new ways to invite input from patients and families.
• Think about how you can get people to ‘switch gears’ from their appointment to this conversation - i.e. from listening to contributing - and how you can make people feel comfortable in that conversation.
• Allow approx 20 mins per conversation.

Sensemaking guidance

1. Capture qualitative responses in a similar format for each conversation (e.g. in the survey template you shared with us, or simply in this document).
2. Analyse the responses for similar themes across all participants.
3. Meet as a team to discuss:

• Possible immediate improvements (quick wins / low hanging fruit) to the service and how you might share those back with patients (e.g via noticeboard in waiting areas, letters, emails or other comms).
• Review any themes that we might need to understand better, perhaps through a wider data gathering exercise - e.g. a more in-depth patient experience survey or further conversations.
• A future plan to bring together an in–person co-creation group to help design the service based on the insights gathered.

Appendix 3A: Life After Stroke - Initial workshop agenda summary & outputs

Convening question

How can we work together to give stroke survivors a better recovery?

Workshop flow

Outputs: Ingredients for a good recovery

At the centre of everything was the idea of empathetic, compassionate care - where survivors are treated as individuals, listened to and there is a human approach to every part of the journey.

This is made possible when…

• Survivors play a role - survivors feel they are part of the process, have a sense of control and are able to get what they need.
• Care is flexible and ongoing - longer and more flexible support acknowledges that survivors are “in it for the long haul” and that “every stroke is different”.
• Everything is joined up - there is a feeling of seamlessness for everyone involved, from communication between multidisciplinary teams and survivors/families, to the transition from hospital to at-home care and support.
• Support networks kick in - a feeling for survivors that a range of support mechanisms (charities, family, friends, community groups, and more) ‘step into gear’.

Appendix 3B: Life After Stroke - Storytelling worked example

Storytelling worked example

1. In mixed groups of 3-4. Approx 10 mins per round.
2. Facilitator assign roles to the group (storyteller and listener).
3. Prompt storyteller to share their story.

• Storytellers share a bit about their experience around stroke e.g. professional role, or experience as a survivor or supporter.

4. Facilitator asks main storytelling question:

• For survivors: Is there a specific time you can think of when you really felt like you were making progress towards recovery?
• For clinicians/carers/supporters: Is there a specific time when you really felt like someone you were supporting was making progress towards recovery?

5. Facilitator asks follow-up questions:

• What made that possible? What was important to you feeling like progress was being made? This could be a person, an object, a resource, a tool - anything that supported that experience.
• What could have been different? It might be that almost everything went well, but some things could have been improved. Or it might be that lots of things could have been different. We’re interested in how the experience might be different for people in future.

6. Listener shares back what they heard:

• What was important in that story?
• What supported them?

7. If time, the facilitator asks the rest of the group if anything stood out to them or felt important.
8. Swap roles and repeat until everyone has played each role.