The charity started as the Macmillan Cancer Support Mesothelioma Resource Centre in 2004, before registering as an independent charity in 2008. By 2012, we had sufficient funding for a second and third Clinical Nurse Specialist (to follow our now CEO, Liz Darlison).
We offered our first £150,000 research grant in 2015 and launched our first five-year strategy in 2016, along with a £25,000 research grant to National Lung Cancer Forum for Nurses (now Lung Cancer Nursing UK) and our first National Mesothelioma Audit Report.
By 2017, income had reached £1m per annum. We also successfully secured a significant covenant fund grant for a dedicated Armed Forces service and moved out of the NHS to new private offices in Leicestershire. We employed our first direct employee in 2018, won the East Midlands Charity of the Year in 2019 and opened the Mesothelioma UK Research Centre at the University of Sheffield in 2020, before our ‘Supporting our Armed Forces’ campaign won the Military and Civilian Health Partnership Award at the 40th HSJ Awards.
By last year, we had grown our staff numbers to 32 nurses and 15 in the operations team. To date, we have invested £2 million in research and audits, our benefits advisors helped patients to identify almost £975,000 in lump sum payments for the period from April 2022 to April 2023, and our nurses made over 30,000 follow up contacts.
Liz Darlison, CEO of Mesothelioma UK said: “It’s incredible how far we’ve come from the early days before we’d even registered as a charity. The charity would never have started without the initial support from the University Hospitals of Leicester and MacMillan Cancer Support and we will always be grateful to them. I want to personally thank all of our staff, trustees, supporters, funders, legal panel members and various stakeholders who have helped us through our journey to become the nationally-recognised charity that we are today.
“And we do all of this to help ensure that mesothelioma patients, their families and carers receive the highest standards of care, treatment, research, compensation and support. We will continue to work towards this vision for the whole mesothelioma community in the UK.”
