NHS is “completely in the dark” about the experience of children with cancer

Young people with cancer remain less satisfied with their care and treatment than adults for the fourth year running – and the NHS remains “completely in the dark” about the experience of children, according to CLIC Sargent.

The latest National Cancer Patient Experience Survey found that patients aged 26 or over were increasingly positive about their care and treatment from the NHS. However, teenagers and young people aged from 16 to 25 remained less satisfied, reporting worse scores than older adults for the fourth year in a row. The study – published on Thursday 25 September – does not cover children aged 15 and under. It acknowledges that younger patients surveyed are usually “the least positive”. They reported most dissatisfaction when asked about:

  • Whether they were given a choice of treatments
  • If they had their trust in their doctors
  • And if they felt involved as much as they’d wanted in the decisions about their care and treatment.

Lorraine Clifton, Chief Executive of CLIC Sargent, said: “It is deeply concerning that young people with cancer have reported lower satisfaction with treatment and care than older adults – for the fourth year running. This provides a compelling case for Department of Health and NHS England to make significant improvements to the experience of young people being treated for cancer.

“Young people are often at a critical time in their lives when they’re diagnosed with cancer. They then have to cope with the emotional impact of the diagnosis, often feeling socially isolated because of absence from school, college or work, and then can fall behind in their education, employment and training.”

"Also, this research fails to consider the experience of teenagers and children under the age of 16. It is vital to extend the survey to the under 16s, so that we can find out what their experience of the NHS is like, for better or for worse. So we urge the Government to do this to help ensure children get the best possible care from the NHS. We would also encourage devolved administrations to follow suit, so we have a clearer picture of patient experience for children and young people across the UK.”