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Under 16

Under 16 Cancer Patient Experience Survey

By Personalised Care

A diagnosis of childhood cancer understandably has a devastating impact on the emotional health and wellbeing of the child and their family, both during and after treatment. Children and young people’s treatment and experience of cancer differs greatly from adults, and we recognise the need for a personalised approach to their cancer care.

It’s so important for the NHS to listen and learn from children and young people in order to provide them with the best possible care and experience throughout treatment and to reduce the impact it has on them later in life.

We want to hear from children and young people, and their families, about their experiences so that we can continue to improve the care and services the NHS delivers.

The Under 16 Cancer Patient Experience Survey builds on the work of the National Cancer Patient Experience Survey, understanding that cancer care pathways and care priorities for children and young people often differ to adults.

The survey has been running since 2020 and the results provide national-level insight into the experiences of children with cancer and informs how the NHS delivers cancer services going forward. Commissioners, providers and national policymakers use the results to assess performance both locally and nationally, to help identify priority areas for enhancing children’s cancer services. The aim is to radically improve the outcomes for children and young people affected by cancer.

The third wave of the survey is being implemented across England from April 2023. Children under 16 who received NHS cancer care during 2022 and their parents or carers will be invited to participate. They will be able to complete a paper questionnaire or an online version of the survey on any device.

Experience of care for people who use our services is extremely important, and the need for personalised care and treatment is well recognised. By contributing to the survey, young people and their parents or carers will help the NHS to continue to improve its services and better support children and young people receiving personalised care.

For more information on the survey visit

Under 16 Cancer Patient Experience Survey 2021 results published

By Personalised Care

The 2021 results of the Under 16 Cancer Patient Experience Survey (U16 CPES) have been published.

The U16 CPES measures experiences of tumour and cancer care for children across England. The survey is now in its second year.

The survey’s respondents are children who were aged between eight and 15 at the point of discharge, and parents or carers of children aged up to 15.

Children from the Humber and North Yorkshire area tend to receive cancer care at Leeds Teaching Hospitals NHS Foundation Trust or Sheffield Children’s NHS Foundation Trust.

From a national perspective, some of the findings were:

  • 9.01 out of 10 was the average parent/carer rating of the overall experience of their child’s care
  • 89% of parents/carers rated the overall experience of their child’s care as 8 or more out of 10.
  • 95% of children report being looked after very well or quite well, with less than 1% saying they were not looked after well.

You can view the results by visiting Under 16 Cancer Patient Experience Survey website.

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