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.  

World Stroke Day 2024

This World Stroke Day we wanted to share Alasdair’s story. In this video stroke survivor Alasdair and his wife Emma talk about their experience of what it was like to be invited to be a part of the Stroke Health and Wellbeing Service, and the difference this support has had on Alasdair’s recovery to date.

Delivering care to stroke survivors

The Stroke Health and Wellbeing Service was a pilot project set up as part of the National Stroke Service Model to test new, innovative ways of delivering care to stroke survivors. Working in partnership with NHS Sussex, Sussex Community NHS Foundation Trust, University Hospitals Sussex NHS Foundation Trust, NHS England, Stroke Association, Headway Sussex, Kent Surrey Sussex Academic Health Science Network.

You can learn more about the project on our service page – Stroke Care Pathway Design – Here

The project has now come to an end, but over the coming months we will be sharing more about this transformative pilot and its impact, showing what can be achieved through building strong, collaborative partnerships across the system, the role of Health Builders and the importance of including people with lived experience as a part of service design.

In the video above you’ll hear Alasdair talk about how much of an inspiration Shreddie, one of our Lead Health Builders was to him and his recovery. You can learn about Shreddie’s story in our case study – Health Builders, improving stroke services – Here