Built to Last
by Liz Darlison MBE
What does it take to build a charity from scratch — and then build it to outlast you? Liz Darlison MBE, CEO of Mesothelioma UK, joins Jose Gaign for a conversation about founding a specialist health charity, leading through grief, the nurse-as-CEO model, and why succession planning is the most important thing a charity leader will ever do.
Liz Darlison MBE
CEO, Mesothelioma UK
Liz Darlison MBE is the founding CEO of Mesothelioma UK, the UK's only specialist mesothelioma charity. A nurse by background, she has led the organisation since its inception, building a national network of specialist nurses embedded within NHS trusts, driving research investment, and transforming the standard of care for patients with this asbestos-related cancer. She was awarded an MBE for services to mesothelioma patients and their families.
Visit Mesothelioma UKAbout This Episode
Mesothelioma UK did not exist until Liz Darlison decided it should. Starting with a Macmillan grant and a conviction that patients with this devastating asbestos-related cancer deserved specialist support, she built one of the most respected specialist health charities in the UK — funding nurse posts inside the NHS, driving research, and changing the standard of care for a disease that kills around 2,700 people in the UK every year. In this guest conversation, Jose Gaign talks to Liz about what it actually takes to build something from nothing: the founding story, the fundraising realities of a cause that most people have never heard of, the model of a charity funding NHS clinical posts, and the question she has been asked less often than she deserves — what happens when she is no longer there? A conversation about leadership, legacy, and what it means to build something that lasts.
What This Episode Covers
How Mesothelioma UK went from a Macmillan grant to a nationally recognised specialist charity
Why clinical credibility is a fundraising superpower — and when it becomes a constraint
How to build donor support for a cause most people have never heard of
The strategic and ethical questions behind a charity funding statutory nursing posts
Inside the 2025–2028 strategy and what 'transforming care' actually means in practice
The question every charity founder avoids — and why it is the most important one to answer
Strategic Homework
Ask yourself honestly: if you left your charity tomorrow, what would survive and what would not? The answer tells you everything about whether you have built an organisation or a personality cult.
Identify one clinical or professional partnership your charity could develop that would embed your impact into a statutory system — making your work harder to cut and your evidence base stronger.
Read Mesothelioma UK's 2025–2028 strategy at mesothelioma.uk.com and note one thing they are doing that your charity could adapt for your own context.
Share this episode
Know a charity leader who needs to hear this conversation? Send them the link.
LinkedIn suggested caption
What does it take to build a charity that outlasts its founder? Liz Darlison MBE, founding CEO of Mesothelioma UK, joined Jose Gaign on The Strategic Health Check to talk about: → Starting from a single Macmillan grant → Funding NHS nurse posts inside the NHS → Fundraising for a cause most people have never heard of → The succession question nobody asks One of the most honest conversations about charity leadership you'll hear this year. https://strategichealthcheck.com/ep13 #HealthCharities #Fundraising #CharityLeadership #MesotheliomaUK
Key Moments
About Mesothelioma UK
Mesothelioma UK is the UK's only specialist mesothelioma charity, providing clinical nurse specialists, research funding, and support for patients and families affected by this asbestos-related cancer.
Visit mesothelioma.uk.comWant to build something that lasts?
Book a free discovery call with Jose Gaign to talk about your charity's fundraising strategy.
Book a Free Discovery CallSeason 2 — Autumn 2026
More guests. More depth. More of the conversations the sector keeps avoiding.
Join the waitlist