We research the cancer experience to understand how people feel about their care, so we can improve services and support for people with cancer in the UK.
As a cancer charity, we research the cancer experience to better understand how people feel about their care. This helps us to identify what's working and what could be done better.
We do this in many different ways including with surveys.
At Macmillan, we use the Cancer Patient Experience Survey to learn about the lived experience of people with cancer in the UK.
The survey asks questions about people’s experiences. This can include emotional aspects of life with cancer, such as how sensitively they were told they had cancer. It also includes practical issues, such as waiting times before seeing a hospital doctor.
The NHS has been running the survey annually in England since 2010. Macmillan now partners with the Welsh government and Welsh Cancer network, Scottish government and the Public Health Agency, and Health and Social Care Board in Northern Ireland, to survey patients in the other three nations.
Read about our findings for each of the four nations below.
CPES in England
The first Cancer Patient Experience Survey was conducted in England in 2010. Since then, around 60,000 patients have taken part every year. We found that the experiences of cancer patients in England are generally positive.
Respondents to the most recent full survey (2021) gave an average rating of 8.92 for overall care, on a scale of 0-10 where 10 is ‘Very good’. But only 71.7% said they were able to have a discussion about their needs or concerns prior to treatment, with 93.1% of that population having a member of their care team helping the patient create a care plan to address any needs or concerns in 2021. This is low, considering the NHS England Long Term Plan aspired 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, including 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. Patients in England’s 20% least deprived areas had the highest score for overall care (8.93), whilst patients in England’s 20% most deprived areas had the lowest score (8.87).
Young and old, ethnic minorities and women
CPES responses in England (2010-2021) 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. Within the 2021 survey White patients gave a score of 8.94 for overall experience of care, in comparison with scores of 8.71 (mixed), 8.55 (black), 8.54 (Asian) and 8.59 (other ethnic groups).
Cancer type also has a bearing on patient experience. CPES results from 2021 shows patients with Brain/CNS cancers reported the lowest overall experience of care (8.37) vs the all cancer average (8.92).
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.
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.
CPES 2021 results and future surveys
The questionnaire was redeveloped in 2021 to reflect changes to cancer services and commitments to cancer care as detailed in the NHS Long Term Plan. This was the first major review of the questionnaire since 2015 and reflects developments in the provision of services over time. Because of the significant changes made to the questionnaire the NHS are starting a new time series with the 2021 results, and are not comparing the 2021 results with previous years.
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 and 2021 onwards.
Find out more:
Linking outcomes with patient experience
The National Cancer Registration and Analysis Service (NCRAS) links the Cancer Patient Experience Survey datasets in England with data held in the cancer registrations database. This extends the possibilities of analysis of cancer patient experience data and enables further exploration of links between experience and outcomes.
- Linking the English Cancer Patient Experience Survey to Cancer registration: relating patient experience to outcomes, a step towards better services and outcomes | International Journal of Population Data Science (ijpds.org)
- Diagnostic route is associated with care satisfaction independently of tumour stage: Evidence from linked English Cancer Patient Experience Survey and cancer registration data - PubMed (nih.gov)
CPES in Northern Ireland
We worked with the Public Health Agency (PHA) and the Health and Social Care Board (HSC Board) to conduct a Cancer Patient Experience Survey in Northern Ireland in 2015. We did so again in 2018, with over 3,000 people responding each time.
On average, the respondents rated their overall care as 9 out of 10 in the 2018 survey. Comparing the 2015 and 2018 results revealed statistically significant increases in positive experiences across six questions. Reasons included being given written information and being involved in decisions about their care.
The comparison also highlights six questions in which positive responses decreased. This includes patients being given information about the side effects of their treatment, and patients feeling they have someone to talk to about their worries and fears when they are in hospital. These are identified in the CPES report as priorities for future service development.
CPES in Scotland
We partner with the Scottish Government to fund the Scottish Cancer Patient Experience Survey (SCPES). The first survey was carried out in 2015, with a second survey in 2018. Each survey received responses from around 5,000 people living with cancer.
Encouragingly, the vast majority (94% in 2015 and 95% in 2018) said their care was positive overall, rating their care 7 or more (on a scale of 0-10, where 10 is ‘very good’). In the most recent survey, 97% felt they were always treated with dignity and respect (increasing from 87% in 2015).
However, there are areas for improvement in Scotland. Some people did not receive emotional, financial and practical support, including vital information about their illness. In 2018, nearly half (45%) of respondents said they weren’t supported emotionally or psychologically by healthcare professionals during treatment.
Over a quarter of people (27%) didn’t completely understand the explanation of what was wrong with them, and over a third (37%) were not given written information about the type of cancer they had. Additionally, only 30% of people received a care plan. This is an improvement on 22% in 2015. However, it is still low despite clear evidence (from the 2015 survey) that those who did receive a care plan had a better experience.
The survey was carried out with the assistance of Information Services Division (ISD), part of NHS National Services Scotland. The survey fieldwork was administered by Quality Health Ltd.
Exploring differences in cancer patient experiences
A secondary analysis of 2015 Scotland CPES data explored the relationship between cancer experiences and other factors. It found that people with access to a Clinical Nurse Specialist (CNS), and people who knew they had a care plan, had a more positive experience overall. We also know a person’s experience of care was less positive if their cancer remained or spread after treatment.
Analysis of free-text comments
The Scottish Government analysed the key themes of the free-text comments supplied by patients in the 2018 survey.
Analysis of the 2018 results found 4,176 positive comments, and 2,285 negative comments, among the 9,320 comments left by survey participants. Patients valued clear information, speedy and efficient processes, good support, good clinical care and feeling that they could put their trust in the system.
Among the negative comments, the report identified several key themes:
- Not feeling confident within the healthcare system
- Feeling their individual needs were unmet
- Problems in the lead up to diagnosis
People described a range of circumstances that led them to not feel confident within the system. They included poor care during treatment, inadequate management of pain and side effects, exposure to infection, or being cared for by staff without sufficient knowledge of cancer. They also included inadequate aftercare – such as not receiving a care plan or not having a point of contact after treatment had finished.
Many patients reported feeling they were not treated as an individual, with needs that should be recognised and considered by those providing their care. People also reported feeling isolated and alone and experienced poor communication, a lack of involvement in decision-making and poor emotional support.
Patients were less happy with their care during the lead up to diagnosis than at any other point in their treatment. The main issues were poor communication and experiencing long waits and delays. This was often due to their GP not recognising symptoms and organising tests. This resulted in some people feeling they were not being listened to.
The analysis of the free-text comments was carried out by Dr Maggie Cunningham and Professor Mary Wells, University of Stirling.
CPES in Wales
Following the success of the first CPES in Wales in 2013, we ran the second in collaboration with the Welsh Government in 2016. It was available in both Welsh and English and could also be completed online for the first time. The results were published in July 2017. A third survey is currently being analysed ahead of publication in summer 2022.
More than 6,700 people living with cancer took part in the 2016 survey. The vast majority of people rated their care positively, with 93% selecting 7 or more out of 10 (on a scale of 0-10, where 10 is ‘very good’). 89% of people said they were treated with dignity and respect.
However, there are also areas for improvement. Only 18% said they were offered a written care plan, despite the Wales Cancer Delivery Plan recommending that everyone should receive one. Less than half (48%) said they were given information about financial help and benefits if they wanted it. Additionally, more than 1 in 5 (21%) felt their GP did not take their symptoms seriously before their diagnosis.
The survey also revealed that one of the key factors of a good experience is having access to a Clinical Nurse Specialist (CNS). For almost every question in the survey, people who had a CNS reported a more positive experience compared to those who did not. This is one of the reasons we want everyone living with cancer in Wales to have access to a CNS, to coordinate their care and support them throughout treatment. However, this is some way to go – the survey showed nearly 1 in 5 (19%) in Wales were not given the name and contact details of a CNS to support them through treatment.
Over 4,500 people left free-text comments as part of their survey response. The majority (61%) of these comments were positive. Key findings from a thematic analysis of the free-text comments are included in the CPES 2016 national report.
If you would like a summary of key findings from the survey: