Under 16 Cancer Patient Experience data published for the first time

Data from Under 16 Cancer Patient Experience Survey (U16 CPES) in England was published this week. This is the first time children and young people with cancer and their parents or carers have been asked about their cancer care experience in this way. 

Young Lives vs Cancer along with others in the sector have long advocated for the development of this survey and worked in partnership with NHS England and survey providers Picker at all stages of its development to support children and parents’ involvement. The survey offers a unique opportunity to hear from children and their families so that needed improvements in cancer services can be identified and changes implemented.  

The results suggest that many children had positive experiences of cancer care but also revealed some concerning issues for families such long journeys for treatment, a lack financial information and access to wi-fi which can be vital to helping children and parents feel less isolated in hospital. 

A quarter of families facing long journeys for treatment 

The survey found that travel to hospital was over one hour from home for a quarter of families, which we know leaves families facing stressful travel costs of up to £180 per month to get their child to life saving specialised treatment, and this is why we continue to campaign for a Young Cancer Patient Travel Fund. 

Our previous research showed that families can face an extra £600 a month due to the extra costs of cancer, so it is concerning that almost a quarter of parents or carers didn’t feel they had enough information about financial support or benefits.   

More to be done 

This survey is an important step forward but there are still voices that are not being heard. We are keen to continue to work with NHS England to help them capture the full range of voices and experience, including listening to those who are seldom heard through survey responses. 

We believe that the voices of children and young people with cancer and their families should be heard in each nation of the UK, and would welcome the opportunity to support the development of a Cancer Patient Experience Survey in Scotland, Northern Ireland and Wales. 

More information about the survey and results can be found here.