Publish date: 20 November 2023

CPES U16.jpgA diagnosis of childhood cancer understandably has a devastating impact on the emotional health and wellbeing of the child and its family, both during and after treatment.

Children and young people’s treatment and experience of cancer differs greatly from adults and the NHS recognises the need for a personalised approach to their cancer care.

It is important for the NHS to listen and learn from children and young people 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 helps the NHS learn from the experiences and views of children under the age of 16 in care and treatment for cancer. It is an annual survey that builds on the work of the National Cancer Patient Experience Survey (which is designed for adults aged 16 and over), understanding that cancer care pathways and care priorities for children and young people often differ to adults.

The latest results (from the 2022 survey) have now been published and show that 89% of children with cancer in Cheshire and Merseyside felt they were looked after well by NHS healthcare staff and 95% of parents/carers rated the overall experience of their child's care at Alder Hey as 8 or more out of 10 – both of which are higher than the national average.

Other findings include:

• 85% of parents/carers said they were definitely told about their child’s cancer or tumour in a sensitive way (a significant increase from last year’s result).

• 91% of parents/carers said that they always had confidence and trust in the staff treating their child.

• 68% of parents/carers said they had access to reliable help and support seven days a week from the hospital.

• 82% of parents/carers agreed that staff definitely offered them enough time to make decisions about their child's treatment.

• 85% of parents/carers and children reported that information at diagnosis was definitely given in a way they could understand.

In response to this year’s results, Rachel Kirby-Rider, Chief Executive of Young Lives vs Cancer, said: “The Under 16 CPES is important because it gives children and younger people with cancer and their families the vital opportunity to share their views and experiences which will go on to improve care. We’re pleased to work closely with NHS England on the survey and as a charity will continue to champion this.

“Overall, most rated the care they received positively, and are being signposted to the support that charities like Young Lives vs Cancer offer when a child or young person is diagnosed with cancer, which is a welcome trend. We want our support to reach every child and young person with cancer, and their families.”

For more information and to view the full set of results, go to: https://www.under16cancerexperiencesurvey.co.uk/