Shedding Light on Long COVID

This blog post was kindly provided by Dr Rhiannon Jones and provides a case study of how art practice and lived experience is central to health research in community settings.

Associate Professor of Civic Practice, and Head of Civic at University of Derby. 

CEO and Founder of S.H.E.D  

Sheds are often described as safe, familiar, common spaces that can also spark curiosity. They can also be a source of inspiration for writers including Roald Dahl and John Steinbeck who both wrote in their sheds. Well, I want to tell you about another kind of shed… a shed where there is always a great conversation taking place. You just need to locate it.  

Introducing… S.H.E.D, the Social Higher Education Depot, AKA a safe and inclusive space, that can be reconfigured, currently, into 32 layouts, creating bespoke environments for people to talk.  The playful design of S.H.E.D 1 enables communities to have a dedicated space built to talk about an urgent matter through creative place-making. S.H.E.D has presented itself as a performance space, a writer residency, dance studio, a cinema, a workshop space, a panel debate space, an exhibition site. It morphs itself into a place to serve a specific purpose, to highlight a specific need for change for the benefit of people and place. 


If we were to time travel back to the Early Dynastic Period (c. 3100–2686 BC) we would be familiar with the ancient Egyptian deity, Shed, a protective god called upon by those in need who wished to be sheltered from danger, sickness or misfortune. S.H.E.D associates not only in name, but in a shared tenacity by offering itself up as a space for shelter from preconceptions. Acting as a space for community discourse, for the “shedding” of prejudices on health inequalities in Derby. 

In 2021, Long COVID researcher, Professor Mark Faghy, at the University of Derby, asked me to develop a project engaging S.H.E.D to create a public realm research project that would put Long COVID into the public realm. The challenge – to raise awareness to living equitably with Long COVID and provide a platform for signposting the public towards support services and key information about local providers.

Masks, shielding, social distancing, lockdowns, track, trace and test are all words that linguistically trigger vivid associations to the COVID-19 Pandemic. But, for over two million people2 in the UK, who have reported symptoms of Long COVID, the pandemic is not a distant memory; it is a living reality.  

So, I curated  a large-scale public installation focused on Long COVID using scientific data & lived experience research that was housed at the Museum of Making, Derby. I commissioned artist researchers3, and cultural and community organisations to develop content  for a S.H.E.D installation, co-designed with patient & public representatives to highlight the challenges Long COVID & to increase public awareness by providing a significant, positive change by forming a national community to ‘create together’ through an ambitious creative project that addresses a pressing social challenge. It connected the creative & cultural industries with the scientific community to produce a public art sculpture, unveiling new findings & impacts on society (including the future of design) due to Long COVID, for the first time.  

This project platformed Long COVID lived experiences; bringing clinical and academic research together through a high- quality community project.  It highlighted the need for health and wellbeing services by increasing public awareness of living with Long COVID. The participation in the project provided positive change for isolated patient & public representatives through participation.  

It demonstrated how design education and design thinking about the Long COVIDCOVID community has created a unique position to highlight and tackle problems, whilst highlighting the Civic value of creative place-makers in responding to societal issues.  

It also brought together stakeholders and members of the public, who wouldn’t have otherwise connected to talk about ways to responding to this problem.  

 S.H.E.D’s reputation to create new ways of creative placemaking will be mobilised to attend to the needs of local communities to influence policy thinking on Long COVID. Commissioning artists researchers of National and International standing, to create new knowledge and communities of influence, based on clinical and lived experience data about Long COVID.  

This project raised questions for key clinicians, stakeholders and service providers about how to improve health and wellbeing services, conversations that needed a platform that we were able to generate through a design-led community, and hyperlocal project. 

Long COVID affects 7,500 people in Derby; 2.3 million people nationally & is arguably a global health crisis. Most patients make a recovery from COVD-19 but 1 in 10 patients develop persistent & disabling symptoms. Services developed to help patients report isolation from society. Public health messaging on Long COVIDCOVID & long-term issues are missing, but the risk to public health remains. There is a call to action here for art and design community to help support messaging and awareness of the risk – decision makers please step forward! 

Through partnership with Derby Museums and Derby Cathedral, supported by funding from  the Royal Society of Arts and the University of Derby, the project successfully shed light on Long COVID. We brought people together through a bespoke S.H.E.D installation, enabling shared clinical data to be disseminated and translated into artworks by artist researchers, creating  a public realm project and city-wide intervention in Derby. Post-installation, S.H.E.D continues to support the Long COVID community, the question the group now asks is: how do we learn to live equitably with Long COVID? 

Sarah Barley-McMullen, who lives with Long COVID, says that more public health messaging and support is needed in Derbyshire and beyond. “We need policy makers to make adjustments to enable people living with Long COVID to stay in employment, such as funding for patient centred research, more clean air filters in work and education to keep people well, and boosters for more people to reduce the risk of developing Long COVID,” she says.  

“We also need more advocacy from creative outlets like S.H.E.D. to take the pressure off the Long COVID patient groups who are having to protest. We need the Government to stop trying to move on, while COVID is still active and presenting a potential risk to everyone.” 

Over half of Long COVID patients reduced their paid work hours, including almost 17% on longer engaged in paid work and receiving no income4. The study by Kwon, Milne and Rayner et al, also found that the average aggregate productivity loss since infection, extrapolated nationally equates to £5.7 billion and for informal caregiving, £4.8 billion. So where is the public messaging? What role can you have — as an educator, as a member of the art and design community — to play to help support urgent societal health care challenges? By raising awareness of the risks, the impact upon health and wellbeing and access to services, creating a space for public discourse that otherwise wouldn’t exist, we can help to support a wider ecology of practice that is human-centred learning for the benefit of all. 


Dr Rhiannon Jones (FRSA) is Associate Professor (Civic Practice), University of Derby. She leads the University Institutional Success Measure for Civic and runs CivicLAB an Institution-wide centre on participatory culture, creative dialogue, and civic practice. She chairs the International Contemporary Working Art Group for Cumulus, the only Global Association in Art and Design. She is a member of the National Coordinating Centre for Public Engagement and Trustee of New Art Exchange, a ground-breaking, Global Majority, NPO for Arts Council England and an award-winning and internationally recognised Gallery. She regularly works with Council for Higher Education in Art and Design, British Academy and Design Council UK. Her research into placemaking is a case study for the National Centre for Academic and Cultural Exchange and presented at the All-Party Parliamentary Design and Innovation Group. She is a published academic, most recently a chapter with Intellect Books (2024) and one with Council for Higher Education in Art and Design on Women in Leadership (2024). and frequently provides keynotes Nationally and Internationally within the Creative and Cultural Industry Sector. She judged the UKNA artists in 2024 and judged the Derbyshire Community Business Awards for East Midlands Chamber of Commerce in 2022-23. She co-founded InDialogue, curating international conferences and residencies, supporting over 600 artists from over 15 countries since its inception. She founded the company S.H.E.D, a pop-up public arts space. Accolades include: finalist for Universities Alliance Award (2022), Shed of the year finalist (2020), UK Green Gown Awards: Benefiting Community (2021). She has been selected as a social regenerative entrepreneur and is a Catalyst Grant holder from, the Royal Society of Arts (2023-4). She founded the CIC, Designing Dialogue(S.H.E.D) in 2019 a public arts, touring and innovation space which has received several national honours and funding from partners such as Design Council, UK, CHEAD, Arts Council England, RSA and local trusts and councils. 



Dr Rhiannon Jones is Associate Professor of Civic Practice, and Head of Civic at University of Derby.


Join in the conversation on Instagram

Find us at

Skip to content