Teenage Cancer Trust response to Nuffield Trust’s QualityWatch analysis

The report identifies young people aged 16 to 24 as the group who most often have to have multiple conversations with GPs or health professionals before being referred, with nearly half having three or more conversations with GP staff, and 1 in 5 having five conversations or more.

The difficulty young people face in getting a referral was also highlighted by Teenage Cancer Trust in our response to the Major Conditions Strategy, where we called on the Government to introduce mandatory training for GPs and healthcare professionals on the most common signs and symptoms of cancer in young people, building on existing NICE guidelines and the GP awareness training tool co-produced by Teenage Cancer Trust, Young Lives vs Cancer and the Royal College of GPs.

Kate Collins, Chief Executive of Teenage Cancer Trust, said: “Young people with cancer are often affected by rarer forms of the disease, and this can create challenges with getting a faster diagnosis as symptoms can be mistaken for growing pains or infections. 

“Teenagers and young adults with cancer have unique needs that differ from children and older adults and it is essential they are not overlooked. We encourage any young person concerned about a potential sign of cancer to be as persistent as their symptoms in seeking support from healthcare professionals and there is advice on our website to help with this.

“Teenage Cancer Trust welcomes any opportunity to work with the Government and the NHS to ensure the unique needs of young people are met.”

The Nuffield Trust analysis also highlights that 3 in 5 16- to 24-year-olds said that when they when they were referred for tests to diagnose their condition, staff didn’t explain why this was happening in a way they could completely understand.

Teenage Cancer Trust produces information specially aimed at this age group, which is written by cancer experts, and reviewed by young people with cancer.

Teenagers and young adults with cancer also face other challenges. Cancer treatments can be less effective for young people as physical changes and rapid growth during puberty and young adulthood can negatively affect how the body metabolises chemotherapy, for example. 

And while clinical trials help researchers find new and better treatments, accessing them can be harder for young people as trials are not always designed with their needs in mind and sometimes have age limits which prevent young people from participating in them. Next week Teenage Cancer Trust will publish recommendations on how to improve access to clinical trials for young people. 

Teenage Cancer Trust funds nurses and youth workers who are specially trained to get teenagers and young adults through cancer. They have 28 purpose-built units within NHS hospitals which are places where young people aged 13 to 24 can feel at home, meet others their age, and welcome family and friends, while being looked after by a dedicated team of specialists. Since being founded in 1990, the charity’s specialised support has helped contribute to increasing survival rates for young people with cancer. 

Data source: NHS, Cancer Patient Experience Survey, 2022