Never Too Young: the campaign

Giving younger people with bowel cancer a voice

We launched our Never Too Young campaign in 2013 to improve the diagnosis, treatment and care of younger people with bowel cancer.

In 2020, we published findings from our survey of people diagnosed with bowel cancer under the age of 50. Their experiences revealed serious gaps in awareness, diagnosis and care.

This is what younger people told us at the time and the changes we called for. While these findings were published in 2020, many of the challenges they highlighted remain today.

What younger people told us

Our findings showed that younger people with bowel cancer weren’t getting the awareness, timely diagnosis or support they needed.

Half didn’t know they could develop the disease, while four in 10 visited their GP three or more times before being referred. Too many also missed out on Lynch syndrome testing, support from a Clinical Nurse Specialist and information about fertility and family planning.

Delays in diagnosis 

• Prior to being diagnosed, half of people didn't know they could develop bowel cancer under the age of 50
• One in three delayed making an appointment with their GP for at least three months, and this was more common in people unaware of the symptoms of bowel cancer
• Four in ten saw their GP three or more times about their symptoms before being referred for tests

High risk groups

• Only 22% of people had been asked about their family history of bowel cancer during initial contact with their GP
• Around half of people had not been offered testing for Lynch syndrome, a genetic condition that increases the risk of bowel cancer at a younger age, after being diagnosed with bowel cancer. 
• Find out more about our work on Lynch syndrome

Treatment and support

• One in five did not have access to a Clinical Nurse Specialist (CNS)
• One in four felt that the support they needed wasn't there after their treatment ended
• Over half didn't have enough support and information about mental health and the consequences of treatment on sex, intimacy and romantic relationships
• The impact of treatment on fertility and family planning was a key concern but 40% said they didn't receive enough information and support on this topic

What have we called for?

• Improved awareness in the general public and for medical professionals on the symptoms of bowel cancer, and that it can affect people under the age of 50
• Younger people going to their GP with symptoms of bowel cancer should be referred for further tests without unnecessary delays
• Younger patients with bowel cancer should have treatment, care and support tailored to their needs
• All younger bowel cancer patients should be tested for Lynch syndrome as soon as they are diagnosed and receive the appropriate surveillance colonoscopies
• Diagnostic capacity must be addressed urgently to prevent further barriers to diagnosis for younger people

Help shape what comes next

We’re now building a more up-to-date picture of the experiences of younger people with bowel cancer.

We’re working with Digestive Cancers Europe on the first Europe-wide survey looking at the experiences of younger people affected by the disease.

If you were diagnosed with bowel cancer under the age of 50, we want to hear from you. By sharing your experience, you’ll help us understand what’s changing, where gaps remain and what needs to happen next.

We’ll use the findings to shape the next phase of our Never Too Young campaign and call for better diagnosis, treatment and support for younger people with bowel cancer.

Get involved

• Read the stories of younger patients diagnosed with bowel cancer
• Get information and support for younger people
• Donate now and help us stop people dying from bowel cancer
• Join us as a campaigner and help us make real change happen for younger patients