Reflections from our first Rethinking Our Health codesign workshops.

Codesign events with communities and partners 

July saw an important milestone in Rethinking Our Health, with our test site partners we held community codesign events to share back the findings of the engagement phase, and to discuss practical ideas to take forward in the autumn. These will be focused on our goal of community-designed, clinically backed support for people with or at risk of osteo-arthritis, cardiovascular disease and diabetes.

A mix of lived and professional experience

At both events we had a half and half mixture of community members and people who work in health, local government, and the voluntary community and social enterprise (VCSE) sector.   

Designing the events with the community 

Both events were planned with our test site partners and community members, and this is key to how they went. This meant focusing on the biggest things people told us about in the engagement phase – there were pain, access to services, understanding and confidence around your condition, practical social and financial barriers.   

Two areas, two approaches 

In one test site there has been a history of (and a funded infrastructure for) conversations and partnership working. Over the last ten years, many issues have been discussed, the progress both desired and created by all, the codesign event felt natural. It felt like we could ask things of each other.   

In our other area leadership is more dispersed, local government takes a bigger role in leading and encouraging community health and engagement partnership working. Test site partners took a participatory appraisal approach to developing community engagement in our big question, and the pre-event work was important to building interest and confidence to take part.   

Shared energy and commitment 

One thing in common was that both events were buzzing with enthusiasm and commitment to neighbourhoods was clear. There is a real appetite for building on existing or previous work, ambition for better solutions and understanding that so much of this is built on relationships.   

What we heard: Key themes from the codesigns 

Key themes that came out of both events were  

• desire for local, early, holistic support  
• positive and ambitious views on the role of community and VCSE in this  
• community engagement and mobilisation, patient leadership and voice is critical  
• importance of being heard, and *feeling* heard – both in individual situations as well as a community  

We heard a range of views about what kind of support could be given by clinicians versus non-clinicians, and creating different configurations of how community and clinician support could be offered together. 

Clinical risk and collaboration 

There’s an important discussion to be had about understanding and managing any clinical risk, which Here as a clinical and community-rooted organisation is well-placed to host.   

Looking ahead 

For now, sign up to receive an update when we publish the next blog. Want to get in touch about Rethinking Our Health? Email us: Collab@HereWeAre.org

Introducing Rethinking Our Health – a new way of working with communities to support people living with long-term conditions. 

Rethinking Our Health is a new collaboration between Here and The King’s Fund, bringing together communities and organisations across Sussex to explore new ways of supporting people living with multiple long-term conditions. 

Together with partners in the voluntary, community and social enterprise sector, primary care, and local government, we’ll be focusing on two neighbourhood test sites: 

• Wick in Littlehampton, supported by the Arun Integrated Community Team (ICT), and 

• Hangleton & Knoll in Brighton & Hove, supported by the West Brighton & Hove ICT. 

Why is this needed? 

Long-term conditions (LTCs) are among the most pressing issues in health and social care in the UK. These chronic illnesses require sustained, ongoing management, and an increasing number of people are living with more than one condition. 

This rise in multiple long-term conditions is having a serious and growing impact on individuals, families, communities, the economy, and our health and care services. 

However, formal healthcare only accounts for around 20 per cent of a person’s health outcomes. The remaining 80 per cent are influenced by social factors, health behaviours and the physical environment. This means we need to look beyond traditional ways of working and rethink how people, communities, and professionals across health and other sectors come together to design solutions.

Who we’re working with 

Wick test site partners 
Voluntary Action Arun & Chichester, Arun District Council, West Sussex County Council, Arun ICT 

West Brighton & Hove test site partners 
The Hangleton & Knoll Project, Portslade Health Centre 

What we’re aiming to do 

People with more than one long-term condition often face a tangled web of barriers to managing their health, not only clinical symptoms, but also housing pressures, transport issues, isolation, work stress, or caring responsibilities. 

Rethinking Our Health is about working with communities to design and test new ways of offering support that will: 

• be rooted in the community and built around people’s real lives 

• be clinically backed and co-designed with local professionals 

• recognise and respond to the social and environmental barriers people face 

• help prevent the development of additional conditions 

Initially, we will focus on supporting people living with osteoarthritis, diabetes and cardiovascular disease, which are often experienced together. We expect pain and mental health to be important factors in this work, although persistent pain will not be included in the project. 

What we know 

We know that people face a wide range of barriers when it comes to managing their health. These include: 

• social factors such as housing, work, transport and caring responsibilities 

• the combined impact of multiple conditions 

• fragmented services which treat conditions in isolation 

• isolation or a lack of local support 

• limited knowledge, confidence or skills to manage their health 

How we’ll work 

The project will unfold over four phases: 

• Community engagement (May–June 2025): Listening to local voices and experiences 

• Co-design sessions (July 2025): Shaping the new approach together 

• Delivery of the new Rethinking Our Health offer (autumn 2025 onwards) 

• Evaluation of the impact and process (autumn 2025 onwards) 

Our principles 

Everything we do will be underpinned by a shared set of values and principles: 

• Asset-based and community-led: starting with strengths, not just needs 

• Clinically backed, co-delivered: health professionals and communities working together 

• Personalised care: support tailored to each person’s life and goals 

• Equal weight to social and clinical factors 

• Addressing health inequalities head-on 

• Trauma-informed ways of working 

• Generous leadership and open sharing of what we learn 

Stay connected 

 If you would like to know more or get involved, please contact jo.crease@nhs.net.

We will be sharing our learning and progress as the project develops on our blog.

At Here, we believe that designing exceptional care means working in true partnership with the people who use our services. In this blog, Health Builder Norman Webster shares how our unique approach puts lived experience at the heart of service design and delivery. 

Designing and delivering exceptional care surely has to include those for whom the care is being designed and delivered? “Do with” rather than “Do to” has to be the way forward to improve outcomes and shift responsibility from clinicians to a shared responsibility with patients. 

Patients and carers are involved as Health Builders in this design and delivery journey at Here.

What is a Health Builder? 

What is a Health Builder, I hear you ask.  

We are a small team of people with various long-term health conditions who work across services at Here, including Sussex MSK Health: Brighton & Hove and West Sussex. We are involved in patient empowerment initiatives like Shared Decision Making and Personalised Care. Our work spans advising on policy documents and public-facing communications, observing clinics to provide feedback for clinicians’ Continuing Professional Development, and helping improve pathways in areas such as stroke aftercare. One of our team members has even provided the voice-over for our informative patient videos.

Holding space in service design 

We are confident in holding our space at the table when important, exceptional care service design conversations happen. We know one another and can speak up for each other in these spaces. We hold regular “Big Conversations” in community settings to gather the views and feelings of our communities. We explore current themes in health care delivery in local communities.  We explore how people currently access our services and what could make the experience smoother and more accessible for everyone. We do this so that we can represent them in the policy and governance decisions as they are made. 

Building accountability into new governance structures 

There is a formal route of reporting our work through the Clinical Quality Oversight Group. This is a new group set up following the creation of the Sussex MSK Health: Brighton & Hove and West Sussex in December 2024. It is vital that, during this period of change within our service, we put patient experience at the heart of building this new MSK service with colleagues from across Brighton & Hove and West Sussex. 

More than a tick-box: meaningful involvement 

The Health Builder team is unique in that we are paid according to NHS guidelines for honoraria and we are involved in areas of work as true partners in creating exceptional care.  We are also unafraid to point out inadequacies in service creation and delivery. We are not simply a group of people with lived experience, wheeled out when “consultation” is required, as part of a tick box exercise. 

Valuing local and cultural connections 

We value community connections and are active members of groups such as Crawley Community Action, Community People, West Area Health Forum and Voluntary Action Adur and Chichester.  

The delivery of services to marginalised groups is important to us. We have facilitated health events with the Gurjar Hindu Indian community, Crawley Islamic Centre and Masjid, West Hove Health Forum and others. Apart from providing on-site health care, we are keen to hear the views of local communities. We provide feedback information via the Clinical Quality Oversight Group. 

Listening, acting and learning through feedback 

Our priority is providing community health and networking events to build long-term and meaningful relationships where those communities feel safe in expressing their health interactions with NHS services. Sometimes these conversations can be difficult, but we value and act upon all feedback through our community engagement efforts. 

One example of this in action is our work to improve stroke pathways. Health Builders collaborated with clinicians and service leads to gather and reflect the real experiences of people who had accessed stroke aftercare services. Through community conversations and targeted engagement, we identified areas where patients and carers felt unsupported, particularly in transitions between acute care and community rehabilitation. Our insights helped to shape clearer signposting, better continuity of care, and more personalised support for stroke survivors and their families.  

Our ultimate aim is to seek out marginalised groups and ensure members of those groups begin to feel that care is accessible and safe for them. 

Why Health Builders matter more than ever 

The NHS has been under immense financial pressure for years. Rising staffing, medicines, energy and fuel costs, a growing maintenance and estates backlog and the post-pandemic situation have tightened the NHS’s purse strings. The people in charge are forced to make tough decisions to balance the books. It is ever more important that patients derive maximum benefit from each interaction with the NHS and that they are treated in the most cost-effective ways possible. 

Making every contact count 

Health Builders provide wrap-around care to people who access our service by welcoming them at CAD and Hub events, supporting them at Peer Support Groups and ensuring that all services and communications are delivered in the most appropriate ways. 

By knowing our communities and understanding their needs through our “Big Conversations” and other activities, we can identify marginalised groups. We make every effort to engage with them to understand their specific needs. We try to make care feel accessible and safe for them. 

The bottom line is that we need to make every contact count in the current health economy. 

By Norman Webster – Health Builder.