Have you been diagnosed with a brain tumour? Order your free information pack.

Exploring the results of the Cancer Patient Experience Survey 2022

Results show that brain cancer has the lowest rating of care across all cancer types.

An adult daughter holds her mother's hands in comfort

The Cancer Patient Experience Survey (CPES) is a yearly national survey for England which allows NHS cancer patients to feedback on their treatment and care. The aim of the survey is to help improve cancer services across England.

Last week, the results for 2022 were released. The average score for all responses, across all cancer types, was 8.88 out of 10, which is a slight drop from an 8.92 score in 2021.

Positively, overall feedback from those affected by brain tumours has improved from the 2021 results. However, there remain areas which require significant improvements.

What do the CPES results indicate for those affected by brain tumours?

Unfortunately, responses from those affected by brain or central nervous system (CNS) tumours show that overall patient experience of care was once again the lowest out of all the tumour groups. The average score for brain/CNS respondents was 8.39 compared to 8.88 for all cancer types. This is despite our overall results having slightly improved since 2021 (8.39 compared to 8.37).

The survey results highlight that the areas of support and communication rank poorly for the brain tumour community. 63% of brain tumour patients responded saying they received the right level of support for their overall health and well-being from hospital staff, compared to 75.5% for all cancer patients.

Similarly, the diagnosis experience of those affected by brain tumours is ranked lower than those of other cancer types. 60% of brain tumour patients responded saying that they only spoke to a primary care professional once or twice before their cancer diagnosis, compared to 77% for all cancer patients. This suggests that too many people within the community are still having to visit a healthcare professional multiple times before receiving a referral.

This is reflected in what we know from our own Improving Brain Tumour Care Surveys, where nearly one in four respondents had to visit a primary care professional more than three times before receiving a diagnosis. This is why we launched our Faster Diagnosis report, which includes recommendations on how diagnosis times can be improved.

The CPES results indicate that there is a lack of informational support being provided to brain tumour patients in their overall care, but also particularly in the diagnosis stage. However, we know that NHS staff have been under considerable pressure and that is why we welcomed NHS England’s long-term workforce plan which will hopefully reduce pressures so everyone can get the care they deserve.

It is also why we advocated for the government to commit to improving signposting to after care and support services in our submission to the government’s Major Conditions Strategy consultation.

vector graph signifying progress of Cancer Patient Experience Survey 2022 to the previous year
How do the results compare to last year?

There are positives to be taken from this year’s Cancer Patient Experience Survey though, as results from the brain tumour community have improved overall. The biggest improvement was in how involved patients were in decisions about their care and treatment whilst in hospital. In 2022, 70.4% of brain tumour patients responded positively to this question compared to 58.9% in 2021.

There was also a strong improvement in respondents feeling they understood the possible long-term effects their treatment could have on them in advance of starting their treatment. This improved from 51.1% in 2021 to 60.6% in 2022.

It must be noted that 35 out of the 59 questions had very similar results to last year, indicating that we should not be complacent in continuing to strive for improvements for those affected by brain tumours.

Notes on CPES

The CPES certainly provides interesting insight into the experience of those affected by cancer. However, brain tumour patients are still woefully under-represented with only 211 responses in this year’s survey. This is the lowest number of any group and is limited for the brain tumour community as it excludes those with a low-grade tumour.

Another barrier for brain tumour patients is the time scale of the CPES. The survey was sent out between November 2022 and February 2023, to cancer patients who were either admitted to hospital for cancer-related treatment or who were a day patient for cancer-related treatment and discharged between April and June 2022. Unfortunately, this makes the data more limited as sadly many brain cancer patients may not live long enough after treatment to be able to respond to the survey.

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.