In July 2020, the Mesothelioma UK Research Centre was established at the University of Sheffield, thanks to funding from the national charity, Mesothelioma UK. The center brings together researchers, clinicians, and PhD students, all experts in mesothelioma, to improve the care and quality of life for people living with this rare and aggressive cancer.
One of the unique things about this research center is its strong focus on real-world impact. It works closely with a Patient and Public Involvement (PPI) Panel, made up of patients and family members, to ensure that all research reflects the actual needs and concerns of those affected.
The center’s goal for the research is to benefit the care of people diagnosed with mesothelioma and their families. One of the studies, “SOS: Supporting Our Supporters” is an example of such research. While the physical and emotional toll of mesothelioma on patients is well documented, far less is known about the impact on the family members and friends who become caregivers. These caregivers are the backbone of support for patients diagnosed with mesothelioma. They provide hands-on care, manage practical tasks, and offer emotional and psychological support. Yet they often do this without much support themselves. This study aims to fill that gap by identifying better ways to support caregivers throughout the journey from diagnosis to bereavement.
By exploring the experiences of caregivers, “Supporting Our Supporters” aims to identify gaps in services and design better support systems that recognize the challenges faced by those who care. It’s about making sure that the helpers get the help they need, too.
Ultimately, the goal of the Mesothelioma UK Research Centre is to improve the lives of people affected by mesothelioma—not just those diagnosed, but also the loved ones who walk alongside them every step of the way. Through research like SOS, they are giving voice to caregivers and working to ensure that no one faces mesothelioma alone.
Learning from this caregiver experience led to The Mesothelioma UK Research Center creating a play in collaboration with the Dead Earnest Theater Company. This play, Invisible Threads, tells stories of families affected by mesothelioma. It highlights injustice, but also the strength of the human spirit, the positivity, and the hope of the mesothelioma community.
For more information on the Mesothelioma UK Research Centre and the work they are doing: https://www.sheffield.ac.uk/murc
