Young cancer patients feel well looked after in NHS hospitals – but nationwide survey highlights issues around continuity of care

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 today. 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.

Commenting on the findings, Chris Graham, Chief Executive at Picker, said:

This survey is important because it provides systematic, representative feedback about the experiences of children and young people with cancer. Although childhood cancer can be a sensitive and upsetting subject, hearing the voices of children and young people is essential if services are to be designed and delivered in a way that is person centred and responsive to their needs.

Today’s findings show that NHS staff provide excellent one-on-one care for patients – but there is a need to focus on improving care continuity. This is one of Picker’s ‘Principles of Person Centred Care’ and can be particularly important for people with serious and long-term conditions. We encourage treatment centres and hospitals to review their own results from the survey and consider how and where they can improve transitions between sites and professionals.

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.

Almost 1,000 responses were received from children, young people, and parents – representing a response rate of 26%. This was the second time the survey has been conducted, building upon a successful launch in 2021. As changes were made to the questionnaire based on feedback from children and young people, the results are not directly comparable to the previous year.

You can find the results of the 2021 Under 16 Cancer Patient Experience Survey here and an infographic summarising the results here.

Notes to editors:

• Further information about the survey is available from https://www.under16cancerexperiencesurvey.co.uk/.
• Picker is an independent health and social care research charity based in Oxford. Picker conducted the survey on behalf of NHS England.