September 15, 2026
Steve dedicated more than a decade to bringing people together and making sure everyone affected by pulmonary fibrosis had a stronger voice and access to better diagnosis, care and treatments.
Steve was diagnosed with idiopathic pulmonary fibrosis in 2008 and received a single-lung transplant in 2016. He used his own experience to make things better for others, sharing his story with honesty and giving his time generously to people living with PF, families, healthcare professionals and researchers.
Steve served as APF’s Chair from 2017 to 2023 and became our first Patient President in 2025. He played a central role in shaping APF into the charity it is today.
Steve was never content simply to describe the problems facing people with PF. He brought people together to tackle them. His drive and determination helped unite people affected by PF, families, healthcare professionals, researchers, charities and industry behind a shared goal: better diagnosis, better care and better treatments.
He campaigned for fairer access to antifibrotic medicines and continually pushed for more treatment options. During the COVID-19 pandemic, he helped APF support people through the challenges of shielding and accessing treatment.
Steve also chaired APF’s transplant support group. He gave his time and shared his experience generously, helping people affected by PF connect with and support one another.
He understood that people living with PF should help shape research, not simply be the subject of it. Steve contributed to research exploring people’s experiences of diagnosis and care, helping turn lived experience into evidence that could influence researchers, clinicians and decision-makers.
His influence extended far beyond the UK. As the second President of the European Pulmonary Fibrosis Federation, Steve helped strengthen collaboration between PF organisations across Europe. He was also a founder and Chair of the European Lung Foundation’s Pulmonary Fibrosis Patient Advisory Group, served a term on the ELF Council and was a member of its transplantation working group.
Through this work, Steve brought the experiences and priorities of people affected by PF to European Respiratory Society task forces, conferences and events. He was also among those who developed the idea of a global coalition bringing PF organisations together across borders.
Daniel Saxton, Chief Executive of Action for Pulmonary Fibrosis, said:
“Steve’s influence on APF is difficult to overstate. He helped shape the charity we are today and always made sure we remained focused on the people and families behind every decision.
“He was determined that people affected by pulmonary fibrosis should be heard, not only in conversations about support and care, but in research, policy and decisions about new treatments.
“I feel very fortunate to have known and worked alongside Steve. We will miss him enormously, but his influence will continue through APF and across the PF community.”
Steve believed deeply in people working together. People affected by PF, families, charities, healthcare professionals, researchers and industry all had a part to play in creating change.
We will honour Steve by continuing to bring people together and pushing for the better care, treatments and future that he worked so hard to achieve.
Our deepest sympathies are with Steve’s wife and children, his wider family, his friends and everyone who knew him.