It is common in the UK, and in many other countries, for childhood cancer treatment to be generic while that for adults is site specific. The two systems do not mesh well and those on the cusp suffer as a result a situation often exacerbated by lack of co-operation between adult and paediatric practitioners. "It's a glass wall that has to be smashed if our young people are to get the service they need and deserve," said Mrs Whiteson.
It is more urgent than ever to act, she said, because there are now more young people with cancer in the 15 to 24 age group than there are children with cancer. Some treated in childhood relapse in adolescence and many of the 60% of children cured need long-term follow up. It is likely that numbers in the 15 to 24 group will increase over the next decade due to growth in the teenage and young adult cohort compared to the expected increase in the child population.
Mrs Whiteson said that none of this seemed to have been sufficiently considered by the medical profession, hindering reorganisation of service delivery. Nor had the NHS made any infrastructure changes to care appropriately for young cancer patients.
"It is taking a charity Teenage Cancer Trust to show the way and inspire change. We have established eight specialist adolescent units in the UK and we have 12 more in the pipeline, each costing around 1 million. The UK, through TCT, is the only country in the world to have set up these units, although other countries where provision for young cancer patients is just as dire are now starting to follow suit."
The range of cancers affecting young people include childhood and adult cancers, and the biology of their tumours is often different. In a further pioneering move, TCT is to fund the world's first Chair in Adolescent Cancer, ploughing 250,000 annually over the next decade into research and treatment.