Government urged to listen to children and young people’s experience of cancer

A new report into the experiences of children and young people who have received cancer treatment has identified crucial areas where their treatment and care could have been improved.

‘Listen Up! What matters to young cancer patients’ is the report of an inquiry into ‘patient experience’ by the All Party Parliamentary Group on Children, Teenagers and Young Adults with Cancer. This cross-party group of MPs heard from children, young people and their parents from across the UK during evidence sessions this spring, as well as professionals. A survey carried out as part of the inquiry found that 82% of young people and parents who responded did not think that the government listens to the experiences of young people with cancer and their families enough.

Anne Harris, Director of Care at Rainbow Trust Children’s Charity, said:

‘We warmly welcome this report which shines a spotlight on the challenges faced by more than 4,000 children, teenagers and young people who are diagnosed with cancer each year. Too often, diagnosis for this age group comes late because it is rare, and the subsequent treatment can be difficult.

For the families that Rainbow Trust supports where a child has a cancer diagnosis, this report makes important recommendations which we hope will be taken up as a priority by the incoming Secretary of State for Health, Matthew Hancock.’

Among the report’s recommendations for change are compulsory lessons in secondary school on spotting the signs of cancer, and making sure that there is designated hospital parking for children and young people with cancer. The report also calls on the government to commit to meet with young cancer patients each year to discuss their experiences, and for survivors of childhood cancer to be offered free fertility treatment if they were not offered fertility preservation before their cancer treatment. The full report is available here.