Published on: 8 June 2021

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 us 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. 

The NHS 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. 

In a UK first the NHS are launching a new survey to specifically learn from the experiences and views of children under the age of 16 in care and treatment for cancer. 

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 results from the survey, available in summer 2021, will provide the first national-level insight into the experiences of children with cancer and will inform how the NHS delivers cancer services going forward. Commissioners, providers and national policymakers will 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 survey is being implemented across England from April 2021. Children under 16 who received NHS cancer care during 2020 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.  

Patient experience is extremely important to the NHS 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 living with and beyond cancer.  

For more information on the survey visit www.under16cancerexperiencesurvey.co.uk. 

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