The first Cancer Patient Experience Survey was conducted in England in 2010. Since then, around 70,000 patients have taken part every year, and the experiences of cancer patients in England are generally positive.
Respondents to the most recent survey (2018) gave an average rating of 8.8 for overall care, on a scale of 0-10 where 10 is ‘Very good’. But only 35% said they were given a care plan in 2018. This is low, considering the NHS England Long Term Plan aspires to provide every person diagnosed with cancer with a care plan by 2021.
Variation in experience
We know from our wider research that people’s experience of cancer varies according to their individual circumstances and the type and stage of their cancer. CPES data reveals that some groups of people are more likely to have a poor experience of cancer care than others. Having visibility of these differences is the first step towards positive change. CPES England analyses reveal the following variations:
People from socio-economically deprived areas in England report a worse experience of their cancer care than people from the least deprived areas. We are discussing our report, Health Inequalities: Time to Talk, with ministers and local politicians to address inequalities in health and social care policy.
Young and old, ethnic minorities and women
CPES responses in England (2010-2018) consistently show that people from minority ethnic groups overall report a poorer experience of cancer services than White British people. An analysis by the University of Cambridge looked specifically at the 2011/2012 CPES results. It showed that ethnic minority patients, as well as the young, the very old and women consistently reported worse experiences in their responses to the questions.
Cancer type also has a bearing on patient experience. CPES results from 2018 show patients with brain cancers reported the lowest scores on five of the nine questions. This includes in the overall quality of care question, with an average score of 8.4. Patients with melanoma report the highest scores in seven of the nine questions, including the overall quality of care question, with an average score of 9.
In their study of the 2011/2012 results, the University of Cambridge also found variation by cancer type. Patients diagnosed with small intestine, lower gastrointestinal, multiple myeloma and hepatobiliary cancers were most likely to report negative experiences. However, patients with breast, melanoma and testicular cancers were least likely. Variation was also found in groups of cancers under the same specialism.
London vs elsewhere in England
Patients in London might have access to world-class treatment. However, they generally report worse experiences of cancer care than elsewhere in England.
Our report, Mind the Gap: Cancer Inequalities in London, found that in 2017, fewer Londoners said staff asked about their preferred name (56.6% in London versus 68.9% outside of London). In addition, fewer Londoners felt they were given enough support from health or social services during treatment (44.3% in London versus 54.1% outside of London).
To find out why patients in London report worse experiences, we recommend a paper in the British Medical Journal: What explains worse patient experience in London?
Happy staff means happy patients
The treatment of hospital staff is intrinsically linked to good patient experience. The Macmillan Atlas of Variation in Patient Experience looked at variation between NHS commissioners in CPES 2011/2012 data. Where staff experienced high levels of discrimination or harassment, cancer patients were up to 18 times more likely to receive poor care.
Using and improving CPES in England
We regularly collaborate with researchers and public bodies to improve the reliability and use of CPES data.
In 2019, we funded important research into the reliability of CPES hospital scores in England, as part of a wider programme of work around CPES.
There are no concerns about the reliability of CPES data at a national level. However, research shows CPES results for some hospitals (generally smaller ones or those with fewer cancer patients), and for some specific questions in the survey, are not as reliable as they could be. This research will inform how Macmillan and others use CPES data at a local level.
We also collaborated with NHS England and NHS Improving Quality on a series of workshops to discuss how CPES results could be used to make improvements. You can read the report, Maximising CPES data to drive improvement, on our website.
Comparing CPES results (pre and post-2015)
We only make comparisons from 2015 and beyond. Due to changes in methodology and questions, some comparisons between older results and the current survey are unfair.
In 2015, the England CPES was shortened. An online version created, results were published in line with the Code of Practice for Official Statistics for the first time, and changes were made to the sampling windows and response options.
You can find out more about the changes on the National CPES website. We recommend reading this before analysing year-on-year results, pre and post-2015.
Find out more:
Linking outcomes with patient experience
On behalf of Macmillan and Cancer Research UK, the National Cancer Registration and Analysis Service (NCRAS) now links the Cancer Patient Experience Survey datasets from past surveys in England with data held in the cancer registrations database. This extends the possibilities of cancer patient experience data and enables further exploration of links between experience and outcomes.