U16 Cancer Patient Experience Survey results

We are proud to be the first country in the world to carry out an annual survey of child and teenage cancer patients. It is so important for us to listen and learn from them and their parents to provide the best possible care and experience throughout treatment and to reduce the impact it has later in life. 

The latest results

The Under 16 Cancer Patient Experience Survey (U16 CPES) is now in its second iteration and the 2021 results have now been published.

The results of the survey look at the positive experiences patients are having that we can build on, where improvements can be made and how the insights can be used to change policy and practice. The results show the consistently extremely high level of care young cancer patients are receiving, and cancer care providers will analyse these results in detail to learn where they could do even better.

Overall:

• 9.01 out of 10 was the average parent/carer rating of the overall experience of their child’s care
   
• 89% of parents/carers rated the overall experience of their child's care as 8 or more out of 10

National insight webinar

Please join us for the National Insight Webinar on Thursday 8 December at 1pm, designed to unpick the results of the Under 16 Cancer Patient Experience Survey 2021. The webinar is dedicated to helping NHS teams, providers, charities, commissioners, and the wider public to better understand the results and identify areas for action.

Secure your spot by registering for the webinar today.

Summary of the main findings of the report

• 9.01 out of 10 was the average parent/carer rating of the overall experience of their child’s care.
   
• 89% of parents/carers rated the overall experience of their child's care as 8 or more out of 10.
  • 89.2% said 8-10 (822 individual responses)
  • 9.5% said 4-7 (88 individual responses)
  • 1.3% said 0-3 (12 individual responses)
     
• 95% of children report being looked after very well or quite well, with less than 1% saying they were not looked after well.
  • 77% of children report being looked after very well for their cancer or tumour by healthcare staff.
  • 18% report being looked after quite well
     
• 77% of parents/carers reported that they were given clear written information about their child's treatment; 3% said they were not.
   
• 93.6% of parents/carers reported that they were told “definitely” (72.6%) or “to some extent” (21%) about their child's cancer or tumour diagnosis in a sensitive way; 4.3% said they were not.
  • 72.6% said yes, definitely (204 individuals)
  • 21% said yes, to some extent (59 individuals)
  • 4.3% said no (12 individuals)
  • 2.1% said don’t know, can’t remember (6 individuals)
     
• 85% of parents/carers feel that staff definitely give them information in a way they can understand
   
• 75% of parents/carers felt that staff definitely offered them enough time to make decisions about their child's treatment
   
• 72% (302 people) of children reported that they could always understand what staff are saying; 1.4% (6 people) said they could not
  • 72.2% said yes, always (302 individuals)
  • 26.1% said yes, sometimes (109 individuals)
  • 1.4% said no (6 individuals)
  • 0.2% said don’t know/ can’t remember (1 individual)
     
• 82% of children reported that staff always speak to them in a way that is suitable for them (Question X21).
   
• 55% of parents/carers feel that different hospital staff are definitely aware of their child's medical history.
  • 54.8% said yes, definitely (515 individuals)
  • 37.7% said yes, to some extent (354 individuals)
  • 32.2% said no (30 individuals)
  • 4.3% don’t know/ not applicable (40 individuals)

More about the survey

The Under 16 Cancer Patient Experience Survey measures experiences of tumour and cancer care for children across England. The survey has been running since 2020 and the survey is now in its second year.

The survey was developed to better understand children and young people’s experience of cancer, which is one of our NHS Long Term Plan commitments. It builds on the success of the National Cancer Patient Experience Survey for adults but recognises that cancer care pathways and care priorities for children may differ to adults, and therefore a unique approach is required to understand their experiences of cancer care and treatment.

The survey has been designed to monitor national progress on experience of cancer care; to provide information to drive local quality improvements; to assist commissioners and providers of cancer care; and to inform the work of the various charities and stakeholder groups supporting children with cancer.

The survey’s respondents are children who were aged between 8 and 15 at the point of discharge, and parents or carers of children aged 0 to 15.

NHS England manages the survey, commissioning Picker to oversee survey development, technical design, implementation and analysis of the survey.

Find out more information

Please also note that Past Results for 2020 can be found on the ‘Past Results’ page of the website: https://www.under16cancerexperiencesurvey.co.uk/past-results/2020

Volunteers needed for next year’s survey: https://www.nelcanceralliance.nhs.uk/news/recruitment-under-16-cancer-survey

Full results from the survey: https://www.under16cancerexperiencesurvey.co.uk/technical-reports