- The Mesothelioma UK Research Centre – Sheffield will be the first of its kind in the country dedicated to patient experience-based and supportive care mesothelioma research
- The centre will specifically focus on generating evidence and knowledge to improve prevention, awareness, patient experience, treatment, care and outcomes for people living with mesothelioma
- Mesothelioma is an avoidable and particularly challenging cancer caused in most cases by exposure to asbestos
- The UK has the highest incidence of mesothelioma in the world with 2,700 new cases diagnosed each year
The University of Sheffield is set to lead the way in pioneering patient-led mesothelioma research after being specially selected to launch the Mesothelioma UK Research Centre – Sheffield (MURC-S).
The MURC-S is funded by Mesothelioma UK, a national charity dedicated to providing specialist support and improving care and treatment for patients with the disease which most commonly affects the linings of the lung and is caused in the large majority of cases by exposure to asbestos.
The new centre will be the first of its kind in the country to focus on mesothelioma experience-based research which will be used to inform health professionals and support organisations on how to improve the vital support and care needed for mesothelioma patients, their family and carers.
Mesothelioma is a terminal and aggressive cancer, with 50 per cent of patients dying within 12 months of diagnosis. The UK has the highest incidence of mesothelioma in the world, with 2,700 new cases diagnosed each year. Nine out of 10 cases are caused by exposure to asbestos, which was used widely in the UK from the 1930s to the 1970s in buildings and building products such as insulation around pipework and boilers, insulation boards used as partitions or fire breaks, ceiling tiles and corrugated roofing sheets.
Co-Director of the MURC, Professor Angela Mary Tod from University of Sheffield Health Sciences School, said: “Our work conducted through the Mesothelioma UK Research Centre will provide crucial information about what patients with mesothelioma and their families experience.
“Mesothelioma is a devastating disease which is caused by asbestos exposure in an overwhelming number of cases. This means families are often not only having to face the devastating diagnosis, but also the start of a legal battle for compensation, which is an extremely daunting and emotional experience.
“Finding an effective treatment or a cure for the terrible disease is obviously the main priority for researchers and clinicians worldwide, but here in Sheffield we are uniquely focused on patients’ experiences in order to drastically improve the support and care they receive.
“Our groundbreaking work will help to establish the gaps in existing knowledge and also help to identify future research priorities.”
Mesothelioma is a devastating disease which is caused by asbestos exposure in an overwhelming number of cases. This means families are often not only having to face the devastating diagnosis, but also the start of a legal battle for compensation, which is an extremely daunting and emotional experience.
Fellow Co-Director, Dr Clare Gardiner from the University of Sheffield’s Health Sciences School, added: “We are immensely privileged and proud to be hosting the Mesothelioma UK Research Centre in Sheffield. The work of the centre will build on a programme of mesothelioma research that has been conducted at Sheffield over many years. Our experienced and dedicated team are well placed to develop a portfolio of world leading research into patient experience in mesothelioma, and translate this into improved outcomes for patients and their families.”
The vision of the MURC-S is to conduct a portfolio of robust and rigorous research that will contribute to the way services are delivered. This research will have a reputation for excellence nationally and internationally and will be of benefit to; the care of people diagnosed with mesothelioma and their families, relevant to the scientific cancer research progress, service development and patient and carer need and inform policy.
Liz Darlison, Head of Services at Mesothelioma UK and Consultant Nurse, said: “MURC-S is a huge milestone for both Mesothelioma UK and the University of Sheffield.
“It represents years of discussion, planning and wishful thinking and I would like to thank the University of Sheffield for passionately embracing the opportunity to host the centre and sincerely wish Clare, Angela and the research team well in their research activities.
“None of this could have happened without Mesothelioma UK supporters; we are beyond grateful for every penny donated, raised or left to the charity and we hope you all feel part of this next stage in the UK Mesothelioma Community’s journey.”
Hannah Ball, Advanced Nurse Practitioner in Lung Cancer and Mesothelioma and Mesothelioma Researcher, said: “Mesothelioma is an unusual cancer and a particularly difficult diagnosis for patients to deal with in that it’s cause is almost entirely due to previous exposure to asbestos, often many years before diagnosis.
“Learning that there is no known cure and the complex legal and financial issues many patients and their families have to deal with, coupled with the fact that they may have never heard of the disease until their diagnosis, all compound the inherent difficulties that come with a terminal diagnosis. Being a rarer cancer means finding expert support for research is challenging.
“The launch of the Mesothelioma Research Centre – Sheffield is incredibly exciting and will bring together a dedicated team of researchers to spearhead patient experience research into mesothelioma.
“Professor Angela Tod and her team at the University of Sheffield have been at the forefront of qualitative research in mesothelioma for many years now and I cannot think of a better and more informed team to be leading this initiative. This in turn will raise awareness and better understanding of the disease and inform policy makers to enable a real impact on patient care, not just nationally but at an international level.”
The MURC-S builds on existing studies conducted in collaboration with the University of Sheffield including:
- Mesothelioma Outcomes, Research and Experience Study (MORE) the Mesothelioma UK’s second patient experience survey. More than 500 patients from across the UK took part in the study, which examined the experience and outcomes, and highlights confidence and satisfaction across many across mesothelioma care.
- The Military Experiences of Mesothelioma Study (MiMES) which aims to understand the experience and health and support needs of British armed forces personnel and veterans with mesothelioma and identify how health and legal professionals and support agencies can best meet their needs.
- The Mesothelioma Asbestos Guidance Study (MAGS) aimed to explore the experiences of presentation, diagnosis, treatment and care for health workers with mesothelioma.
- Mesothelioma Education Workers Study (MEWS) developed as a critical account of the experiences of current and former school-based education workers with mesothelioma.
- RadioMeso which identifies ways to improve the patient and family carer experience of receiving a diagnosis of mesothelioma.
- Palliative care needs of patients with mesothelioma and their families, which explores palliative care in mesothelioma, and the role of clinical nurse specialists in meeting those needs
The MURC is keen to explore potential research collaborations and aims to link the growing number of academic and clinical researchers focusing on mesothelioma in the UK to enhance the impact that studies can have on practice and policy.
The centre is already working with a number of international collaborators in South Africa and the United States in order to expand the research and its impact globally.