They suffer from late diagnosis, they are denied the chance to take part in clinical trials and they get shuttled between the vastly different specialities of child and adult oncology. Improvements in survival now lag behind those of children and older adults and young people face the ordeal of a life-threatening disease with little support or acknowledgement that they have any special needs.
Mrs Myrna Whiteson, chairman of Teenage Cancer Trust, told a news briefing at the Trust's Third International Conference on Cancer and the Adolescent that it was a sign of this age group's invisibility that because of the way data are broken down in official statistics no one knows with any certainty what the UK incidence and prevalence of cancer is in the 13 to 24 age group, though best estimates put incidence at upwards of 2,000 cases a year.
"It's a dreadful and unacceptable situation," she said. "Cancer is the most common cause of non-accidental death in teens and young adults in the UK. The Teenage Cancer Trust has been highlighting the problem for over 10 years. We have been spending millions of pounds building and equipping specialist teenage units, lobbying and generally trying to drag cancer services for teens and young adults into the 21st century. Yet successive governments have done nothing."
There was at last, she conceded, a hint of progress with the National Institute for Clinical Excellence (NICE) extending to adolescents their forthcoming guidelines for treating children. These are due to be issued next year.
"But progress is not fast enough, and it's not TCT that is causing the delay. It's a combination of factors, including government reluctance, lack of medical recognition of the age group and conservative and unimaginative hospital man
Contact: Margaret Willson
Teenage Cancer Trust