Under 16 Cancer Patient Experience Survey
Introduction
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 Under 16 Cancer Patient Experience Survey informs how the NHS delivers cancer services with the aim to radically improve the outcomes for children and young people affected by cancer.
The NHS really wants 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. If you receive an invitation in the post, please complete the survey.
What is the Under 16 Cancer Patient Experience Survey?
In 2020, NHS England launched a national survey to measure the experience of children and young people under the age of 16 in care and treatment for cancer. The 2024 survey is the fifth iteration of an annual national survey to measure children's cancer and tumour care provided by the NHS in England.
The survey has been designed to monitor national progress on experience of caner care: to provide information to drive local quality improvements; to assist commissioners and providers or cancer care; and to inform the work of the various charities and stakeholder groups supporting children with caner.
The 2024 survey was carried out by Picker Institute Europe on behalf of NHS England. The survey captures the experiences of children who were ages 8 and above at the start of the fieldwork period, but under 16 at the time of their care or discharge, and the parents and carers of children who were aged under 16 at the time of their care or discharge.
Key Highlights from the 2024 survey found that:
Overall, parents/carers. rated the experience of care highly. 91% of parents or carers rated the overall experience of their child's care as 8 or more out of 10 (compared to 88% in 2023)
Gratitude for care received was expressed with a particular focus on the role staff played in care experiences and positive attributes such as kindness and friendliness were highly praised.
How will the survey be used?
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.
More information
For more information visit www.under16cancerexperiencesurvey.co.uk and watch our video below.
If you have a question about the survey, please visit https://www.under16cancerexperiencesurvey.co.uk/faq
