Children and young people report good experiences of NHS cancer care in ground-breaking new national survey

Most children and young people with cancer in England feel ‘very well looked after’ by healthcare staff, according to a ground-breaking new survey published on 27th October.

Although the NHS has routinely surveyed adults about their cancer care for some years, these results mark the first time this type of feedback has been systematically collected from children and young people.

The survey, developed by Picker on behalf of NHS England and NHS Improvement, was sent to parents of children and young people aged 16 or under who had received a confirmed cancer or tumour diagnosis and been treated at one of England’s 13 NHS Principal Treatment Centres in 2020. Parents or carers were asked to give feedback about their child’s care, and children and young people aged 8-15 were invited to give their own views as well. More than 1,100 responses were collected, representing a 35% response rate overall.

Parents and children alike gave positive ratings of their care overall. Four in five (80%) children said that they were “very well” looked after by healthcare staff, and 92% of parents or carers rated their overall experiences of their child’s care as 8 or higher out of 10. Similarly, 89% of parents and carers said that their children were “always” treated with respect and dignity, and a 96% said that they felt involved in their child’s care and treatment.

Clear communication is always an important feature of healthcare, but especially when dealing with children and families facing serious diagnoses. A sizable majority of parents/carers (87%) said that staff “definitely” gave them information in a way that they could understand, but children and young people were less likely to report this. Seven in ten (69%) children said that they “always” understood what staff said, with this falling to 63% for children aged 8-11.

Results around care coordination showed 59% of parents/carers said that different members of staff caring for their child were “definitely” aware of their child’s medical history. And of those families who had received care from more than one hospital, around half (54%) said that the different hospitals “always” worked well together. Continuity of care and smooth transitions have been identified as one of the eight Picker Principles of Person Centred Care, placing them amongst the core features of care that matter most to most people – so it is important that providers use the results and work with children, parents, and carers to understand how this can be improved.

Commenting on the findings, Chris Graham, CEO of Picker, said

We welcome this publication, which is an important landmark in understanding children and young people’s experiences of cancer care. Whilst childhood cancers are a challenging and sensitive subject, it is vital that providers seek and listen to feedback from those using services if they are to deliver high quality person centred care.

Now, for the first time, we are able to provide robust reliable evidence of how children’s and families cancer care experiences compare across England. We are proud to have worked with NHS England and NHS Improvement in developing this survey and we encourage all of England’s Principal Treatment Centres to review their own results closely so that the feedback gathered can be used to improve the care that children and families experience.

Notes for editors

• The Under 16 Cancer Patient Experience Survey was conducted between April and June 2021. Children and young people were invited to participate if they had received inpatient or day case care from an NHS Principal Treatment Centre in 2020 following a confirmed cancer or tumour diagnosis.
• The survey was managed by NHS England and NHS Improvement, who commissioned Picker to oversee the survey’s development, technical design, implementation, and analysis. Development of the survey was supported by an advisory group of expert stakeholders including healthcare professionals, charity representatives, patients, and parents or carers.
• Full details about the survey and results are available on the dedicated survey website at https://www.under16cancerexperiencesurvey.co.uk/
• Chris Graham is available for media interview. To arrange your interview, or if you have any other media enquiries, please contact Greig Box Turnbull at Fortitude Communications, gbt@fortitudecommunications.com, or the Communications Manager at Picker, Emma Newton – emma.newton@pickereurope.ac.uk