Under 16 National Cancer Patient Experience Survey

Improving cancer care for children and young people is a key commitment in the NHS Long Term Plan. The National Cancer Patient Experience Survey (NCPES) for children under 16 years of age is a new national initiative to gather feedback from children and young people on the care and treatment they received. This will help understand what is good about children’s cancer care and identify how improvements can be made.

Currently in development, this new survey will be made up of two separate questionnaires to capture the experiences of children at different ages; one for 8-11 year olds and one for 12-15 year olds. A questionnaire to capture the experiences of parents/carers (of children aged 0-15) is also being developed. Having both children’s and parents’ perspectives will provide vital information about their cancer experience – what worked well during their care and what could be better or different – to help make cancer care better for the future.

An advisory group which includes children and parents, stakeholders and the survey supplier has been set up to develop the questions with a view to launching the survey next summer. During January 2020, Picker recruited people to take part in a number of focus groups throughout February in London, Manchester and Bristol. These discussions, each involving six to eight people, will help researchers to understand what aspects of their experience of cancer care matters most to people and this will underpin development of the survey questionnaire over the coming months.

If you would like to receive updates on the progress of the survey for children under 16, please do get in touch via england.insight-queries@nhs.net.

Support to complete the National Cancer Patient Experience Survey

Patients can get help, access a translator or complete their survey by telephone by calling the Picker FREEPHONE helpline on 0800 103 2804. Patients can also ask for the questionnaire in large print. To find out more about giving feedback visit the National Cancer Patient Experience Survey website.