IN July this year, doctors told Andrew Winterbottom, founder of the Oxfordshire-based charity Fight Bladder Cancer, he had perhaps two years to live.
He had been diagnosed with terminal bowel cancer.
After almost nine years of relatively good health following his first brush with the disease – a battle with bladder cancer – Mr Winterbottom admitted the devastating news came as a ‘complete shock’.
However the 64-year-old says he is now determined to use his remaining time to help secure the future of the charity in Chinnor with the launch of the new Step Forward campaign which aims to encourage people to commit to monthly donations.
He said: “It is crucial that everyone affected by bladder cancer – patients, carers, family and friends – have a place to come to for support, information and advice.
“They need to know that someone is speaking up for them when key decisions are made about policy, care and research.
“That is not going to stop because I have to step back from leading the fight myself.”
Mr Winterbottom, a former amusement park designer, founded the charity in 2009 to provide support which he himself found was distinctly lacking.
Fight Bladder Cancer became the first dedicated bladder cancer charity in the UK.
Under the stewardship of the astute businessman, the charity has grown year on year on a minimal budget and is now in regular dialogue with pharmaceutical companies, health bodies and national government.
A host of top clinicians have also been keen to work with Fight Bladder Cancer which has now started part-funding research, a milestone marked by its recognition as a non-commercial partner with the National Institute for Health and Care Excellence (NICE).
He said: “Since we have been around the medical community has opened its doors to us – it’s as if they were waiting for us.”
However in order to continue this work, Mr Winterbottom realises the need for a more sustainable funding model.
He said: “We were never very good at asking for money.
“We learned how to do really great things on a minimal budget.
“The workload is increasing exponentially which is fantastic because it means we are helping more and more patients but we need the continued funding so we can keep doing that.
He added: “Monthly giving is ideal because it’s a bed rock and you know what you can commit to.
“If we can get 4,000 people helping us each month, imagine how much of a difference that would make.
“There’s nothing stopping us from becoming a £1m to £2m charity over time.”
With its head office in Chinnor the charity has enjoyed the support of villagers from day one – the charity’s Wee Bookshop and Cafe have proved particularly popular.
And despite the increasing work with clinicians and central policy makers, Fight Bladder Cancer will remain in Chinnor, and will not change its fundamental principle of being patient-led.
Mr Winterbottom said: “We do not intend to turn into a faceless charity , we want to retain our patient focus and continue to be led by patients.
“We want to make sure it continues like that and I feel very very confident that it can flourish, we just need that support.”
Mr Winterbottom is now part-way through his first cycle of chemo which he hopes will be able to extend the time he has left, however exactly how effective the treatment is will not be known until later this month.
As he prepares to hand over the reins of the organisation that he built from scratch, Mr Winterbottom said he has great faith in the team he will leave to run the charity day-to-day, including the new chief executive Lydia Makaroff who will take up her role in January.
He said: “We have achieved a lot.
“It’s heartwarming what you can do in life and I feel very very proud of what we’ve achieved.
“I have spoken to a lot of other people who have started charities and there’s a thing called ‘founder syndrome’ where they don’t understand that, at some point, they aren’t going to be around.
“I always knew I would have to step back and hand my baby over to a team and the team is there, it’s a great team.
“And now I need to concentrate on myself and my family.”
For more information on Fight Bladder Cancer or on the charity’s Step Forward campaign visit the website at fightbladdercancer/stepforward