Young cancer patients and parents report improvements in NHS communication and information

New findings from the 2024 Under 16 Cancer Patient Experience Survey, published today, show encouraging progress in how communication and information are provided to children receiving NHS cancer care. But there are also areas in need of improvement – including in the diagnostic process and privacy in hospitals.

The survey, which was commissioned by NHS England and conducted by the healthcare research charity Picker, gathered feedback from more than 750 children and parents of children who received cancer or tumour care in England between January and December 2024. The findings cover young people’s care journeys through diagnosis, treatment, and to care at home and in school, and they offer valuable insights into what is working well and where improvements can be made across NHS children’s cancer services. 

Diagnosis

Receiving a cancer diagnosis for a child or young person is a stressful experience for families, and the survey showed room for improvement in how this process is managed. Whilst most respondents described effective treatment, between a third and a quarter indicated that some parts of their diagnostic process could have been improved. For example:

• Only 70% of parents or carers reported that they were definitely told about their child’s cancer or tumour diagnosis in a sensitive way.
• Similarly, 71% of parents or carers felt that they were seen at the hospital as soon as they thought was necessary after being referred by their GP
• Three quarters (75%) of parents, carers, and children reported that information at diagnosis was definitely given in a way they could understand.

More encouragingly, 82% of parents or carers reported that they could “definitely” find information about their child’s diagnosis in 2024 – a sizeable improvement from 72% in 2023.

Communication in hospitals

There were some improvements in how hospital staff communicated information when children were present. In 2024, 77% of parents or carers said that hospital staff were “always” sensitive when discussing information in front of their child (up from 71% in 2023), and 80% felt staff always shared information with children in an appropriate way (up from 76% in 2023).

There were also improvements around privacy in hospitals – although a large proportion of parents, carers, and children still reported concerns. In 2024, 57% said that they “always” had somewhere private to talk to staff when in hospital, an increase from 50% in both 2023 and 2022.

In contrast, the proportion of children who felt that hospital staff “always” talked to them, not just their parent or carer, decreased from 78% in 2023 to 71% in 2024.

Commenting on the results, Amy Tallett, Picker’s Head of Research, said:

“The 2024 Under 16 Cancer Patient Experience Survey results indicate progress in some key areas of person centred children’s cancer care, particularly around communication and information provision.

“While areas of progress are encouraging, challenges remain. It is particularly concerning that fewer children felt that staff always talked to them, instead of just to their parents or carers.

“As the government continues to develop its National Cancer Plan, these results should be used by providers to understand care quality from the perspective of young patients and their parents – and this insight should be used to guide improvements in the things that matter most to people affected by childhood cancers. At a national level, these results provide robust evidence about priorities for the upcoming cancer plan and as the Ten Year Plan is implemented. Listening to and acting on feedback from young patients and their families is vital to ensuring high quality person centred care for all.”

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Notes to editors

• For media enquiries, please contact Picker’s Marketing and Communications team at pressoffice@pickereurope.ac.uk, or phone: 01865 632 235.

• The survey is conducted by Picker on behalf of NHS England. 

• Eligible participants included all patients aged under 16 at the time of receiving cancer care, with a confirmed diagnosis of cancer or some non-malignant tumours, who had been admitted to hospital for cancer related treatment or who were seen as a day case patient for cancer related treatment, and had been discharged between 1st January 2024 and 31^st December 2024. 

• The survey was conducted between April and June 2025. The survey involved 13 Principal Treatment Centres across England. A total of 3,434 people were invited to take part, and 759 responded, yielding a response rate of 22%.

• Details about how the survey was administered, and full results are available at  https://www.under16cancerexperiencesurvey.co.uk/.

• Picker’s submission to the National Cancer Plan call for evidence is available in full at: https://picker.org/research_insights/pickers-response-to-shaping-the-national-cancer-plan/.  

Picker’s team of researchers and data scientists are available to support organisations in understanding, measuring, and using workforce and user experience. For queries about our services or to request a call, please contact info@pickereurope.ac.uk.