Melanie Wotton, Arts in Health Project Manager, Arts for Health and Wellbeing Team, Cardiff and Vale University Health Board (CVUHB), and Paul Whittaker and Tamsin Griffiths of Four in Four, reflect on the learning from the Cystic Fibrosis Voices project
The landscape of cystic fibrosis in Wales has changed in recent years.
The COVID-19 pandemic and the introduction of a new, highly effective therapy for the condition presented an opportunity to redefine services for people living with cystic fibrosis.
Cardiff and Vale Health Charity wanted to explore how the creative arts could be embedded in those services for the benefit of people living with the condition and their multidisciplinary healthcare team.
Having partnered with art organisation Four in Four to successfully deliver virtual arts sessions to people with cystic fibrosis in 2020, the health board's Arts for Health and Wellbeing team partnered with Four in Four again, along with staff at the All Wales Adult Cystic Fibrosis Centre to develop our HARP-supported ‘Cystic Fibrosis Voices’ project.
We had several motivations for this phase of work.
We wanted to find ways the creative arts could reframe future cystic fibrosis services, assisting people living with the condition and staff responding to changing care dynamics.
New facilities at the All Wales Adult Cystic Fibrosis Centre, University Hospital Llandough, which provides specialist care to more than 300 adults from across Wales, were completed in 2021. Nursing staff were keen to use the arts to create a welcoming environment and provide a focus for in-patient stays, as well as to foster connections between people living with the condition who cannot meet in-person because of cross-infection dangers.
We also wanted to move to a shared decision-making service.
Opportunities for collaboration
Four in Four’s non-prescriptive multi-media arts approach encourages ‘creative conversations’ and self-expression.
We were engaged in the project to…help bridge the gap between patients and staff by changing the conversation. Instead of asking ‘What does Cystic Fibrosis mean to you?’, we asked both staff and patients, ‘Who are you?’
Participants could use their creative voices through different media, including film, photography, storytelling, print, sculpture and dance.
It also nurtured collaboration, including within the health board.
Four in Four began with creative conversation sessions for staff members, building new relationships and a solid foundation for the project.
As patients and new staff reported finding the multi-disciplinary cystic fibrosis all-Wales service overwhelming, Paul and Tamsin mapped it out creatively.
The resulting map, inspired by the London Underground map, provides information about services for people living with cystic fibrosis, empowering and informing their decisions. It will also aid new medical staff and we hope to produce a digital version.
Making internal connections
The creative process enabled our arts team to make new connections within the health board.
Through the mapping process, we connected with physiotherapists, dietitians, youth ambassadors and the wider healthcare team.
We connected with the board’s improvement and implementation team on evaluation and are keen to continue building this relationship. We also collaborated with our cystic fibrosis youth worker.
Nurse Managers on the ward helped deliver a ‘My Wales’ photography project, with the images produced being showcased in patients’ rooms.
In those rooms, there will also be art packs containing painting and embroidery projects, which were co-designed and co-created with an artist who uses the cystic fibrosis service.
Our patient experience team provided induction training for Four in Four, who worked closely with staff members and participants. We collaborated with external independent evaluator Susanne Burns and Cardiff Metropolitan University to understand the impact of this project on staff and those accessing our cystic fibrosis services.
We also worked closely with patient ambassadors and other key staff through our project working group.
Beyond the health board, an arts team member worked alongside a game design artist to create interactive texting games for inpatients on the cystic fibrosis ward, and we helped commission a mural artist for the centre.
We hope this collaborative artwork… is the start of this novel way of service design and development
A matter of time
Some of our greatest learnings have been time-related.
Cystic Fibrosis Voices was created with a long-term vision in mind, so foundation-building was key to this project’s success.
Making and building relationships in a large health service takes time and the pandemic and relentless winter pressures made delivering art sessions to time-poor staff members challenging.
However, their voices and exceptional creative ideas were heard and will be delivered in the months ahead.
HARP also allowed us space for discovery, which meant our project evolved as we progressed and discovered new opportunities.
Virtual art sessions delivered by Paul and Tamsin for people living with cystic fibrosis enabled creative, open conversations that provided learning.
Some participants said the creative sessions had helped change the way they think about their experiences with cystic fibrosis.
Another said that after a tough year, the weekly sessions helped rebuild their passion for creating art and pushed their creative boundaries.
Others enjoyed the opportunity to meet other people living with cystic fibrosis at different ages and stages of their condition.
It gives us a unity that we sorely miss and need
We now look forward to learning from creative sessions involving both staff and patients.
Just the beginning
As one of our first larger-scale projects, it allowed us to explore how arts can be embedded into a health service to help redefine it.
By combining participatory art and environment improvement and engagement, we are closer to our goal of developing a shared decision-making cystic fibrosis service.
This collaborative approach to service design and development is just the start.
We are pursuing further funding opportunities to continue the project and are confident our approach would benefit other services within our health board and beyond.
Cystic Fibrosis Voices is a partnership between Cardiff and Vale University Health Board and art organisation Four in Four.