Children and young people report varied experiences on their cancer and tumour care in England

The recent national survey results, published on 8th November, reveal that although parents or carers and children report positive experiences of their overall cancer or tumour care, there is room for improvement in some areas such as care coordination and communication.

This is the third survey conducted by the NHS that collates feedback from children and young people about their experiences of cancer and tumour care. 

The results of the survey will be used to help commissioners, health care providers, charities and national policymakers identify priority areas for improvement in children’s cancer care services.

The Under 16 Cancer Patient Experience Survey (U16 CPES), developed by Picker on behalf of NHS England, was sent to parents and carers of children and young people aged under 16 who received care at one of England’s 13 NHS Principal Treatment Centres (PTCs) during 2022.  Parents or carers were asked to give feedback about their child’s care, and children over 8 were invited to give their own views as well.  885 responses were collected, representing a 25% response rate overall.

Parents/carers and children gave positive ratings of their overall cancer care.  Three out of four children (75%) said that they were looked after very well by healthcare staff, and 89% of parents or carers rated the over experience of their child’s care as 8 or more out of 10. 91% of parents or carers said that they and their child were always treated with respect and dignity, and 83% always had confidence and trust in staff caring for their child.

Clear communication with patients and their families is central to a positive patient experience and aligns to one of the eight Picker Principles of Person Centred Care. Communication is particularly important when dealing with children and families facing such a diagnosis. Almost three quarters of children (71%) felt that staff always talked to them, not just their parent or carer, and 69% of children reported that they could always understand what staff were saying. 87% of parents or carers reported that they definitely had the chance to ask staff questions about their child’s care and treatment.

In relation to care coordination, 62% of parents or carers felt that different hospital staff always worked well together, and 57% 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: 

We are pleased to have worked with NHS England on the survey and are thrilled to see the results published to broaden our understanding of children and young people’s experiences of cancer care. The feedback should be used to support the delivery of high-quality person-centred care, and we really value the time that children and their parents or carers have taken to respond to the survey.

Although overall care is generally rated well, there is room for improvement in some aspects of care including communication and care coordination. For the first time this year, Principal Treatment Centres can compare their findings to last year’s survey to understand how children’s cancer care experiences have changed over time.

This will help them monitor the impact of any improvement initiatives since last year. It is vital that providers use the results and work with children, parents, and carers to improve cancer care provision as well as to identify where they are performing well. Picker will soon be running workshops to facilitate understanding of the data and to provide an opportunity for health professionals to share learnings and inspiration for service improvements

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.   
• The survey is managed by NHS England, who commission Picker to oversee the survey’s development, technical design, implementation, and analysis.  Development of the survey was support 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) 2022 was conducted between April and June 2023. 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 2022.
• 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 or Greig Box Turnball at Fortitude Communications,gbt@fortitudecommunications.com.