Picker: Under 16 cancer patient experience survey (2 November 2022)

Summary

Developed in 2020, this Picker survey aims to understand the experiences of cancer and tumour care among children and their parents/carers. The results will help improve children’s cancer services across England.

The survey, conducted by the charity Picker on behalf of NHS England, included children, young people, and their parents – with separate questions designed to be appropriate to different age groups. Children and young people were included in the survey if they had a confirmed cancer or tumour diagnosis, received inpatient or day case care from an NHS Principal Treatment Centre (PTC) in 2021, and were under 16 years of age at the time of their discharge.

Content

Children and young people treated for cancer in NHS hospitals in England have positive experiences with staff and the majority feel ‘very well looked after’, according to a new survey published from Picker. But children and their families also describe problems around continuity of care, which raises concerns about whether services are sufficiently person centred.

Overall, 89% of parents/carers rate NHS cancer or tumour care for people aged under 16 as 8 or above on a scale of 0-10, and 77% of children said that they felt “very well” looked after. This compares favourably to other care settings: for example, in recent surveys ratings of 8 or above out of 10 were given by 85% of parents/carers of children and young people treated in hospital for all conditions and by only 70% of adult inpatients. Coupled with positive results about interactions with individual staff members, this suggests that NHS hospitals are providing good one-on-one care for young people with cancer.

Despite these positive results, the survey shows problems around continuity of care. More than a third of respondents (34%) said that staff did not or only sometimes worked well together, and around two in five (38%) said that they were “always” or “sometimes” told different things by different members of staff, which left them feeling confused. This was particularly an issue for parents/carers of the youngest patients, those aged 0-7: 43% in this group reported being confused by inconsistent information. Problems with continuity were worse for those who received care from more than one hospital (77%); of this group, 46% said that different hospitals did not or only “sometimes” worked well together.