Children and young people’s experiences of NHS cancer and tumour care show some improvement – despite gaps in care coordination and continuity

Most children and young people treated for cancer by the NHS in England have good experiences of care, and there has been a substantial increase in the proportion who say that they are very well looked after by staff. But more should be done to improve the coordination and continuity of care.

These are the findings of the Under 16 Cancer Patient Experience Survey 2023 results, published today. The survey, which gathers feedback from both young people and their parents or carers, shows some improvements in children’s cancer care, although experiences are varied.

Parents or carers tended to report positive experiences of information and communication provision. For example, 84% of parents or carers definitely had the chance to ask staff questions about their child’s care and treatment, and 83% were offered clear information about their child’s treatment. When asked about their overall care, 82% of children said they were very well looked after by staff for their cancer or tumour: a substantial improvement compared to 75% last year.

Similarly, children and young people reported various improvements in communication compared to the previous survey. Around four in five (78%) young patients felt that staff always talked to them, not just their parent or carer, compared to 71% last year. And 73% said they could always understand what staff were saying, up slightly from 69% last year.

Despite these encouraging findings, there remains room for improvement relating to care coordination and continuity. 62% of parents or carers felt that different hospital staff always worked well together and 59% of children reported always or mostly seeing the same members of staff for their treatment and care.

Commenting on the findings, Dr Amy Tallett, Head of Research at Picker, said: 

It is exciting to see the results of the latest survey published today, which continue to add to our insight on children and young people’s experiences of NHS cancer care. We really value the time that children and their families have taken to respond, and it is reassuring to see improvements in some of the questions asking children about communication with staff.

The survey was developed with children for children and asks about aspects of care that matter most to them. The results are used nationally and locally by charities and service providers to understand where there are gaps in care provision in addition to highlighting areas of good practice in the delivery of person centred care. Care providers should take pride in the improvements evident in this year’s survey – but we also call on them to review the findings and look for further opportunities to develop more person centred services for children and young people.”

Picker will soon be running a results webinar to provide an overview of the national results and hear the views of National Directors at NHS England. Further information can be found here.”

Ends 

Notes for Editors 

• Picker is an international charity working across health and social care.  Established in the US in 1987 and UK in 2000, our work is at the forefront of understanding and furthering the link between patient experience, person centred care, and clinical excellence.  We believe in high quality person centred care for all, always.   
• This was the fourth annual survey conducted by Picker on behalf of NHS England that asks children aged under 16 and their parents or carers about their experiences of cancer or tumour care at one of England’s 13 NHS Principal Treatment Centres (PTCs) during 2023. Different surveys are sent to different age groups, allowing for the design and wording to be age appropriate. People can respond either online, by paper or over the phone.
• In total, 949 responses were received from children, young people, and parents – representing a response rate of 25%. The results are used to help commissioners, health care providers, charities and national policymakers identify priority areas for improvement in children’s cancer care services.
• The survey is managed by NHS England, who commission Picker to oversee the survey’s development, technical design, implementation, and analysis.  The ongoing development and implementation of the survey is supported by an advisory group of expert stakeholders including healthcare professionals, charity representatives, young patients, parents, and carers.
• The Under 16 Cancer Patient Experience Survey (U16 CPES) 2023 was conducted between April and June 2024. Children and young people were invited to participate if they had received cancer-related inpatient or day case care from an NHS Principal Treatment Centre in 2023.
• Individual Principal Treatment Centres (PTCs) have access to reports to allow them to understand their results locally. This includes a freetext report that helps them to interpret the written comments from responses to the open-ended survey question. An interactive dashboard is currently being developed which will allow further exploration of the data both nationally and at PTC level, for example by breaking the results down by different patient groups. 
• No statistical significance testing has been done to compare results across years, therefore please interpret any differences with caution.
• Full details about the survey and results are available on the dedicated survey website at https://www.under16cancerexperiencesurvey.co.uk/
• For media enquiries, please contact the Marketing & Communications Manager at Picker, Lorraine Pullen pressoffice@pickereurope.ac.uk Mobile: 07825 952160