Cancer experience of care

Everyone should be treated with care and compassion and be an equal partner throughout their cancer care. NHS England and NHS Improvement is committed to making sure experience of care is always considered alongside clinical effectiveness and safety.

Understanding patient and unpaid carers’ views about the cancer care and treatment they’ve experienced will help make our services better for all. We ask health professionals to support and encourage people, from all backgrounds, to provide feedback on their care and treatment. We also encourage those who are invited to take part in our annual Cancer Patient Experience Survey to give it serious consideration. This is an important opportunity to share personal experience to help improve cancer services for future patients, their families, and unpaid carers.

The Cancer Patient Experience Survey

The Cancer Patient Experience Survey for adults 16 years and above is sent out every year to ask people about their recent experiences of NHS cancer care and treatment. The survey covers all NHS trusts that provide adult cancer services in England and has been designed to understand cancer care; to assist NHS organisations to make improvements to cancer care; and to provide information to charities and other groups that support cancer patients. ​

The results from previous surveys are available on the Cancer Patient Experience Survey website, where you can find information about the survey and how to get help and support completing the survey. The website also includes information about other ways in which you can give feedback to the NHS.

The Under 16 Cancer Patient Experience Survey

Improving cancer care for children and young people is a key commitment in the NHS Long Term Plan. The Cancer Patient Experience Survey for children under 16 years of age is a new national initiative, to gather feedback from children and young people and their parents/carers on their experience of cancer care and treatment. This will help us to understand what is good about children and young people’s cancer care and identify how we can make improvements.

The Under 16 Cancer Patient Experience Survey has been developed following extensive testing with key stakeholders including children with cancer, and parents/carers of children with cancer.

The first survey will capture experiences of care for patients discharged from inpatient or day case care at Principal Treatment Centres in 2020, and the results will be made available on the Under 16 Cancer Patient Experience Survey website in October 2021. You can find more information about the survey and how to get support completing the survey on the website, along with other ways to provide feedback on cancer care.

The Cancer Patient Experience Survey (CPES) Award

Since 2019, NHS England and NHS Improvement have worked in collaboration with Macmillan and the Patient Experience Network (PEN) to deliver the National Cancer Patient Experience Survey (CPES) Award. The award is presented at the annual Patient Experience Network National Awards (PENNA) to a team which used insight and feedback to deliver improvements in experiences of care.

The purpose of the Award is to recognise and promote the use of the Cancer Patient Experience Survey and other patient insight and feedback data sets, to develop and deliver measurable improvements in patient experience. There is an emphasis on patient involvement and the sharing of good practice and effective improvement approaches across the cancer sector.

The Award winner and finalists can be found on the Patient Experience Network website, along with the presentations delivered at the Award ceremony.

The Cancer Experience of Care Improvement Collaboratives

The Cancer Experience of Care Improvement Collaborative brings together groups of cancer healthcare professionals and people with lived experience from different organisations to improve services. The aim of the Improvement Collaboratives is for each project team to use insight and feedback (e.g. the Cancer Patient Experience Survey results) to improve the experience of care for cancer patients, their families, and unpaid carers.  Project teams are able to make improvements based on what matters to people who use cancer services that align with local, regional, and national priorities.

Principles of the collaborative: ​

  • Working in partnership with people with lived experience to co-produce and co-design improvement projects using a structured framework – Quality, service improvement and redesign (QSIR) tools
  • Using insight and feedback (e.g. surveys, complaints, feedback, compliments) to improve experience
  • Sharing and learning​ together across England

Cohort 1 2019/20

The first Cancer Experience of Care Improvement Collaborative launched in 2019 with 17 project teams who worked on local improvement projects based on what mattered to general and all cancer patients. Projects ranged from implementing a ward trolley round aimed at reducing worries and fears, through to a team improving the experience for day case breast cancer patients.

Cohort 2 and rare and less common cancer cohort 2020/21

In 2020, 23 project teams participated in two collaboratives, which delivered improvement projects covering all cancers, including rare and less common cancers. A final survey, sent to all the project teams, demonstrated that 100% of the respondents would recommend taking part in the collaborative. People who completed the survey reported improvements in experience of care for patients/carers (93%), staff experience (89%) and team working (81%).

A recognition event was held for the collaboratives, to showcase their achievements and their commitment to improving experience of care locally, despite a very challenging year.

Feedback from participants:

“I have thoroughly enjoyed this experience – thank you”. Project team member.

“The rewards of being a part of a project team, which is focused around improving patient experience are immense”. Project patient partner.

“Thank you for your support and for always being there to answer our questions and for being a constant source of guidance and help”. Project team member.

Cohort 3 2021/22

In July 2021, we launched a fourth Cancer Experience of Care Improvement Collaborative consisting of 14 project teams. The aim of this collaborative is to improve the explanation of diagnostic test results in a completely understandable way for adult cancer patients in ethnically diverse communities.