The Cancer Patient Experience Survey (CPES) is a national survey for England that aims to understand the experience of NHS cancer patients throughout their treatment and care.
The 2021 survey was the first time that the survey has been run in full since 2019 due to the pandemic, with the results aiming to help improve cancer services across England.
The results for 2021 were released last month, identifying clear areas of need, in particular around the experience of diagnosis for brain tumour patients, alongside some more encouraging results for brain tumour patients around the support they’ve received.
What do the results show?
Overall, the results show that brain cancer unfortunately has the lowest average rating of care of all the cancer sites published, with a score of 8.37 out of 10 compared to an overall average for all cancer of 8.92. The highest rating was for skin cancer at 9.08. Out of the 60 questions asked about patient experience, 44 of them had a lower average score for brain tumour patients than for all cancer patients.
The experience of diagnosis ranks poorly for brain tumour patients, with 50% of brain tumour patients responded saying that they only spoke to primary care professional once or twice before their cancer diagnosis, compared to 77% for all cancer patients.
Likewise only 61.7% of brain tumour patients agreed that diagnostic test results were explained in a way the patient could completely understand, compared to 78.8% of all cancer patients.
This emphasises the need for the Government to explore whether emerging triage tools could improve prompt diagnosis of brain tumours as the evidence develops, including within community diagnostic hubs – something which we highlighted in our response to the 10-Year Cancer Plan for England consultation.
However, there were also a number of areas highlighted by the survey where brain cancer patients had a higher score than for all cancer patients. This includes being told they could have a family member, carer or friend with them when told diagnosis, with 83.3% of brain tumour patients having this experience compared to 71.4% of all cancer patients.
Our response to the 10-Year Cancer Plan for England consultation asked the Government to commit to action to ensure Holistic Needs Assessments (HNAs) are being routinely offered to brain tumour patients at diagnosis and any key changes in care, with resulting care plans put in place, to ensure patients are receiving the support they need.
In our submission, we also urged the Government to outline specific commitments and targets for brain and the less survivable cancers to drive forward the transformational changes we need in diagnosis, treatments and care.
The results from the 2021 CPES show that this ask remains necessary, and that urgent action is needed. The 10-Year Cancer Plan was initially due to be published over the summer but has now been delayed. We recently joined One Cancer Voice to write to the Conservative leadership candidates asking them to recommit to the publication of the plan as a top priority.
How does the CPES work?
Whilst the survey provides some useful insights, the experiences of people diagnosed with brain cancer tend to be under-represented compared to other cancers due to the survey’s methodology. For example, a similar number of people are diagnosed with head and neck cancer every year compared to brain cancer, yet head and neck responses for 2021 are at 1,556 compared to 245 for brain cancer.
The survey was sent out between October 2021 and February 2022, to a sample of cancer patients who were admitted to hospital as an inpatient for cancer-related treatment or who were seen as a day case patient for cancer-related treatment and discharged between April and June 2021. Many brain cancer patients unfortunately may not live long enough after treatment to be able to respond to the survey, meaning that the data is more limited.
Share your experience
We know not everyone with a brain tumour will be invited to complete the CPES, or invited at a time that works for you. If you would like to share information about your experience to help us identify gaps and advocate for improvements, you can respond to our Improving Brain Tumour Care survey at any time.