We are deeply saddened to share the news of the death of Alison Fielding BEM, a remarkable leader, advocate, and friend to so many within the Cardiomyopathy UK community.
Alison joined our Board of Trustees in 2012 and then served as Chair from 2015, during a period of significant development for the charity. Her strategic insight, professional experience, and deep understanding of patient needs helped shape our direction and strengthen our voice. More recently, as Vice President (Patient Focus), she continued to champion the lived experience of people affected by cardiomyopathy, ensuring that our work remained grounded in what matters most to patients and families.
Alison was also one of our Change Makers – a group of individuals who use their lived experience to influence and improve cardiomyopathy care across the UK. In this role, she brought clarity, courage, and a deep sense of responsibility, helping to ensure that patient perspectives were embedded in national conversations about service design, diagnosis, and long‑term support.
Her connection to our community was personal as well as professional. After her diagnosis of dilated cardiomyopathy in 2011, Alison became an active volunteer – supporting others through our Facebook groups, attending local meetings, and offering one‑to‑one support to people facing new diagnoses or major procedures. She understood the emotional impact of cardiomyopathy and was a passionate advocate for improving psychological support across both NHS and voluntary services.
Alison was also a driving force behind the charity’s increasing focus on cardiomyopathy research. She played a central role in our James Lind Alliance Priority Setting Partnership, which brought together patients, families, and clinicians to identify the top ten research priorities for cardiomyopathy. This work laid the foundation for Cardiomyopathy UK to become a research funder for the first time in our history. Alison served on our inaugural Research Advisory Committee as an expert by experience, helping to shape the first grants round and ensuring that funded projects reflected the real needs of the community.
Her influence extended beyond cardiomyopathy. Living with metastatic kidney cancer as well, Alison represented patients at national level – contributing to NHS England, the Cancer Drugs Fund, and research collaborations. Alison was a dedicated Chair of the South East Genomic Medicine Service Patient & Public Voice Committee, sharing her lived experience to advocate for policy and practice changes. Alison spoke candidly about the disparities between cancer and heart failure services and worked tirelessly to ensure that cardiomyopathy received the attention, innovation, and investment it deserves.
In 2021, Alison was awarded the British Empire Medal for her outstanding service to cardiomyopathy and kidney cancer patients – a recognition that reflected the admiration and gratitude felt across our community.
Alison’s legacy is one of compassion, clarity, and unwavering commitment. She helped countless people feel heard, supported, and understood. Her influence will continue to shape our work for years to come.
We extend our heartfelt condolences to her family, friends, and all who knew her.
Alison's funeral and post-service reception will be held on Wednesday 8th April. Should you wish to attend, please email the team at contact@cardiomyopathy.org for further details.
We have started a tribute page for Alison, as a dedicated online memorial space created to honour, celebrate, and remember Alison. Please use the space to share thoughts, memories or condolences, or to light a digital candle in Alison’s memory.
Tribute page: https://alison-fielding.muchloved.com/