Leaders with lived experience: Ali Stunt, founder and chief executive, Pancreatic Cancer Action

In the fourth of five pieces on leaders who used their experiences to set up voluntary organisations, Jude Habib speaks to someone who herself was diagnosed with cancer

Ali Stunt
Ali Stunt

Stunt was 41 years old when she was diagnosed with pancreatic cancer in 2007.
The married mother of two didn’t have any recognisable symptoms until a month before her diagnosis. Nor was she aware of the disease. "I didn’t know anything about it," she says. "I didn’t know that my chance of surviving for five years was only 3 per cent." Her year of treatment was "hell", but she survived.

To raise awareness of the condition and place a spotlight on early-stage diagnosis, she began campaigning in 2009 alongside a consortium of organisations, which led to the creation of the first Pancreatic Cancer Awareness Week. After receiving positive feedback, she realised there was a need for a charity dedicated to early diagnosis of the disease and founded Pancreatic Cancer Action in 2010. Her own surgeon came on board as a trustee and remains involved today. In the early days, she did everything herself, from running events to designing and printing flyers. "It was like being a sole trader,"
she says.

Early successes included using her marketing experience to secure an article in The Daily Telegraph headlined "I should be dead by now", which helped to raise awareness. Stunt says: "I knew that we had to get the profile of the disease up there."

At first, other pancreatic cancer charities viewed the new charity with cynicism, but Stunt persisted and it now works collaboratively with them. As in business, she argues, you need disruptors to help drive progress. Her hope now is to grow the charity and improve survival rates. "I want us to be at the forefront of major campaigns alerting the public to the signs and symptoms," she says.

She sees lots of duplication in the sector and would advise people to explore the alternatives before setting up their own charities. But if someone is convinced that they want to set up something new, "only they will know if they’ve got the passion and drive to take it forward".

Stunt says her lived experience of pancreatic cancer gives her a "true insight from the patient’s perspective" and a passion for change. "This can be a key motivator for those who are working for you and with you, allowing the organisation to power forward," she says.

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