The remarkable legacy of Dame Deborah James

Today marks one year since the tragic death of our formidable patron, Dame Deborah James.

She has been a constant source of inspiration, especially to those affected by bowel cancer. The people that followed her on social media, read her best-selling books or listened to her award-winning podcast, and those that watched her on the TV will never forget how many lives she saved now and in the future thanks to the increase in awareness of the disease and its symptoms that she generated.

Dame Deborah left many legacies to be proud of, and we’ve highlighted just a few of these.

Her honesty, frankness and humour changed the landscape of bowel cancer

Since her own bowel cancer diagnosis in 2016, Deborah campaigned tirelessly to raise vital awareness of the disease and its symptoms, amplifying the voices of the bowel cancer community. She captured the heart of the nation with her zest for life, whether that was from running a 10k in her underwear to being dressed as a poo emoji on a train. She had the ability to turn the worst possible situation into an opportunity to inspire and educate, which eventually led to her Damehood.

We’re still seeing the impact of her tenacious campaigning as the number of people in the UK who can name one or more symptoms of the disease has risen from 55% in spring 2022 to more than 70% now. In the lead up to her death, the number of visitors to our website had never been higher, with tens of thousands more people seeking information about the disease, and NHS England saw a similar spike to their bowel cancer web pages too.

Her honesty, frankness and humour changed the landscape of bowel cancer, she was an extraordinary campaigner who had a laser-like focus for people to check their poo, and they did just that. She inspired thousands up and down the country to talk about their bowel habits, know the symptoms and to speak to their doctor if something wasn’t quite right.

She was the inspiration behind our #GetOnARoll campaign

Building on the public and media interest in bowel cancer generated by Dame Deborah in the months leading up to her death.

Cara Hoofe - Deborah’s friend, fellow patient, and M&S employee - used a staff suggestion scheme to persuade M&S CEO Stuart Machin to work with us to print bowel cancer symptoms on their toilet roll packaging and we turned this into our #GetOnARoll campaign, calling on other retailers to follow suit. This had a tremendous response from the supermarket and toilet roll industry, with Aldi, Asda, Co-Op, Morrisons, Sainsbury’s, Waitrose, Andrex, B&M and Ocado all joining our #GetOnARoll campaign in the past 12 months. They’ve also donated more than £350,000, which we will be investing in our early diagnosis work.

Cara Hoofe says, “Deborah James inspired me to suggest the idea, and it’s upsetting she’s not here to see the final product, but she continues to be a huge inspiration to me and other young people diagnosed with bowel cancer.”

Referrals for bowel cancer hit a record-high

Dame Deborah’s final message in the months leading up to her death was to ‘check your poo – it could save your life’ and it seems like people are doing just that.

The figures in the month that Dame Deborah died (June 2022) show 96,774 people living in England were on the waiting list for bowel investigations – this is 2,537 higher than the previous month (94,237) and 8,938 higher than in June 2021 (87,836).

Over the last year we are continuing to see an increase in the number people waiting for bowel investigations. The latest figures in April 2023 show 102,791 people living in England were waiting for tests that can diagnose bowel cancer.

This is a good indication that people are aware of the symptoms and are contacting their GP, and that their concerns are being taken seriously because it’s important to rule out bowel cancer first and fast.

Early diagnosis is vital - bowel cancer is treatable and curable, especially if diagnosed early. Nearly everyone diagnosed at the earliest stage will survive bowel cancer, but this drops significantly as the disease develops.

She raised £11.3 million pounds for causes she was passionate about

In her final weeks, fuelled by her spirit of 'rebellious hope' and passion to help others, Deborah worked to establish the Bowelbabe Fund to support charities she was passionate about, including Bowel Cancer UK, which to date has raised £11.3 million.

In April 2023 during Bowel Cancer Awareness Month, we were delighted to announce that we were awarded £883,000 to support a comprehensive bowel cancer awareness roadshow travelling the length and breadth of the UK, talking about bowel cancer risk, signs, symptoms, and the importance of screening.

It will also help support us in creating e-learning modules, webinars, and face to face learning sessions for GPs and pharmacy staff across the UK to build their knowledge on symptoms and risk factors, allowing them to confidently have conversations with people about the disease.

Her campaigning “saved my life”

There are so many people who have got checked or taken a screening test because of Dame Deborah’s message – and that’s going to save lives. Here are just a few examples.

“If it wasn’t for Dame Deborah’s campaigning, I wouldn’t have known the symptoms of bowel cancer, I wouldn’t have gone to my GP as quickly and it would’ve resulted in a later diagnosis. I’m just so thankful for everything she has done.” Ellie.

“Deborah inspired me to contact my GP when I noticed blood in my poo, and I’m just so grateful. I was diagnosed with stage 2 bowel cancer - it could’ve been a lot worse if I’d waited. I feel very lucky.” Debra.

“I didn’t have any symptoms of bowel cancer, but I had a niggling feeling something was wrong. I followed Dame Deborah quite closely and she kept saying that if something didn’t feel right then contact your GP, so I did just that. I’m so thankful as shortly after I was diagnosed with stage 1 bowel cancer. I know first-hand the importance of early diagnosis and I urge everyone to know the symptoms and those eligible to complete their screening test.” Nicky. 

“When I received my bowel cancer screening test in the post, I was going to ignore it as I didn’t have any symptoms. But I remembered seeing Dame Deborah on TV dressed in a poo costume to raise awareness of the disease. She inspired me to complete the test.” Jane. 

Like so many, we’ll miss her

Whether it was her infectious smile, her amazing attitude or her dancing in hospital, she showed us that even with a terminal diagnosis she wasn’t going to stop living life to the full. She was an inspiration, and we’re proud to call her our patron and friend. Dame Deborah was a beacon of light whose legacy will continue to save lives for many years to come.

• Read more about Dame Deborah James' story
• Learn about the symptoms of bowel cancer
• Find out more about the support we offer

Photo credit: Sophie Mayanne - @sophiemayanne