Cancer patient experience survey (CPES)

Macmillan’s ambition is to reach and improve the lives of everyone living with, and affected by, cancer. We carry out research and analysis so we can understand how patients feel about their care, what’s working and what could be done better.

Cancer patient experience in England

Cancer Patient Experience Survey

Each year more than 70,000 patients in England take part in a Cancer Patient Experience Survey (CPES). The survey is run by Quality Health on behalf of NHS England. Established in 2010, this annual survey measures the experience of cancer patients across a number of aspects during their care pathway. These include emotional aspects (such as how sensitively a person was told that they had cancer) as well practical issues (for example, the length of time a person had to wait before first seeing a hospital doctor).

The sixth iteration (2016) of this survey was published in July 2017, and showed us that scores had significantly improved since 2015 on 13 questions, and deteriorated on one question. 

Read a summary of the 2016 National Cancer Patient Experience Survey results.

In 2015 there were a number of changes to the survey which followed through to 2016 – we recommend you read this guide alongside the results.

Other resources:

Full national data table [Excel file]

2016 results for individual trusts and CCGs

Maximising CPES data to drive improvement [PDF]

2015 reports and data tables

More information about the CPES can be found on the National CPES website. Previous years’ findings can be found on the Quality Health Website.

League table of hospital trusts

Based on the results of the CPES, Macmillan has previously created a league table of the best and worst performing trusts in England.

2014 findings show that patients treated by London NHS services report a worse experience of care compared with patients treated elsewhere in England. To see the top and bottom 10 hospitals in the league table, download the 2014 league table and insight briefing [PDF].

To read more about why patients in London reported worse experiences, download the paper What explains worse patient experience in London?.

Survey validity

We have also funded important research into the validity of the survey, looking at the effect of case mix (ie the mix of patients treated in a hospital) on survey scores, to ensuring that comparisons made between hospitals are fair.

Download the paper or full report on the effect of case mix adjustment on CPES scores.

Inequality in reported cancer patient experience by socio-demographic characteristic and cancer site

Researchers from the University of Cambridge published their work, in the October 2014 edition of the European Journal of Cancer Care, on the variation in experience among patients with different cancers and characteristics as an important step for assisting the design of targeted improvement interventions.

Analysis of 2011/2012 CPES (n = 69 086) data showed that younger and very old, ethnic minority patients and women consistently reported worse experiences across their responses to the questions. Beyond socio-demographic variation, patients with small intestine/rarer lower gastrointestinal, multiple myeloma and hepatobiliary cancers were most likely to report negative experiences whereas patients with breast, melanoma and testicular cancer were least likely.

There were also inequalities in experience among patients with cancers treated by the same specialty. Specifically, patients with ovarian, multiple myeloma, anal, hepatobiliary and renal cancer reported notably worse experiences than patients with other gynaecological, haematological, gastrointestinal and urological malignancies respectively.

Understanding variation in experience can help to better target improvement interventions and future research and evaluation.

Dr Georgios Lyratzopoulos

Cancer patient experience in Northern Ireland

For the first time, Macmillan Cancer Support worked with Public Health Agency (PHA) and the Health and Social Care Board (HSC Board) to conduct a patient experience survey in Northern Ireland. The survey was distributed in 2015 and 62% of cancer patients who were sent the survey completed it.

Results of the survey were published in October 2015, with more than nine out of ten (92%) surveyed stating that their overall care was excellent or very good.

Download the national report or Health & Social Care Trust reports.

Cancer patient experience in Scotland

The first survey

Macmillan Cancer Support have partnered with the Scottish Government to fund the first ever Cancer Patient Experience Survey in Scotland (SCPES). The survey was sent out in October 2015 to nearly 8,000 patients who had been treated for their cancer in Scotland, and 61% of those sent a survey completed it – a total of 4,835 responses.

National and local results were published in June 2016 and showed, encouragingly, the vast majority of patients (94%) said their care was positive overall (rating their care 7 or more on a scale of 0-10 where 10 = very good). 87% felt they were always treated with dignity and respect and 84% were given access to a Clinical Nurse Specialist (CNS). However there are areas for improvement, particularly around communication and information for non-clinical support services such as financial help and community care services. Additionally, only 22% of patients had been given a care plan.

For the full quantitative results, please visit the Scottish Government website.

Analysis of free-text comments

Macmillan and the Scottish Government funded the University of Stirling to analyse the key themes of the free text comments supplied by patients. The report containing these findings was published in October 2016. Independent analysis by cancer care experts found over 2,500 positive comments and almost 2,000 negative comments among the 6,961 comments left by survey participants. 

The main themes arising from the positive comments included valuing clear information, speedy and efficient processes, good support, good clinical care and patients feeling that they could put trust in the system.

However, amongst the more negative comments, the report also identified two key themes:

  1. not feeling confident within the system
  2. not feeling that individual needs were met.

To download the report, please visit the Scottish Government website

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. The analysis of the free text comments was carried out by Dr Maggie Cunningham and Professor Mary Wells, University of Stirling.

Exploring Differences in Cancer Patient Experiences

Secondary analysis of the SCPES data has been conducted to explore which factors affected experience. Exploring Difference in Cancer Patient Experiences examines the relationship between the experiences of cancer patients and a range of factors including, but not limited to: the impact of a Clinical Nurse Specialist; having a care plan; urban/rural differences; pre-existing conditions; time since first treatment; and whether or not the cancer had remained/spread.

Having access to a CNS was found to have an association with the biggest number of questions among the factors tested, yet around one in six (16%) are not given the name of their CNS, the results of the CPES showed. Knowing you have a care plan also has a positive relationship with experiences of care, and a person’s experience of care may be less positive if their cancer remained or spread following treatment.

To download the Official Statistic report please visit the Scottish Government website.

Cancer patient experience in Wales

Together with the Welsh Government, we’ve run the second national cancer patient experience survey in Wales, following the success of the first ever CPES in Wales in 2013. Results were published in July 2017. 

Download the 2016 national report or local health board and Trust reports.

More than 6,700 people with cancer took part in the survey, a response rate of 65%, telling us how they felt about their experiences of cancer care in Wales. Overall, people told us their care was good, with 93% rating their care positively (7 or more out of 10 on a scale of 0-10 where 10 = very good). 97% said they had all their treatment options explained to them and 89% said they were always 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 plan recommending that everyone should be offered one. Less than half (48%) said they have been given information about financial help and benefits if they wanted it, and more than 1 in 5 (21%) felt their GP didn’t take their symptoms completely seriously before their diagnosis.

The survey also revealed that one of the key success factors for 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 have access to a CNS. That’s one of the reasons why Macmillan Wales wants every person with cancer to have access to a CNS, yet the survey showed us that nearly 1 in 5 (19%) were not given the name and contact details of a CNS to support them through their treatment.

Thematic analysis of the free-text comments left by over 4,500 people was also conducted, and key findings published in the national and local reports alongside the closed questions. The majority (61%) of these comments were positive. Respondents could complete the survey online for the first time, and surveys were available in both Welsh and English. 

For a summary of key findings from the survey, download our Cancer care in Wales infographic [PDF] - also available in Welsh [PDF].

The first survey

In the summer of 2013 we carried out the first survey. More than two thirds of cancer patients who were sent the survey completed it (69%).

Download the 2013 national report or local health board reports.

The final report for the Wales CPES [PDF] containing findings from the analysis of the free-text comments was published in conjunction with Southampton University.

Variations in patient experience

Our research shows some groups of people are more likely to have a poor experience of cancer care, including younger people, and those from ethnic minorities. Experiences can also vary by the type of cancer a patient has and where they are treated.

The Macmillan Atlas of Variation in Patient Experience [PDF] identifies variation between NHS commissioners across a range of thematic areas.   

Analysis of patient and staff experience

Macmillan’s analysis shows that the treatment of hospital staff is intrinsically linked to good patient experience. Happy staff means happy patients. Where staff suffer high levels of discrimination or harassment, we found cancer patients are up to 18 times more likely to receive poor care.

Linking outcomes and patient experience - CPES linkage

On behalf of Macmillan and Cancer Research UK, the National Cancer Registration and Analysis Service (NCRAS, formerly NCIN) has linked the Cancer Patient Experience Survey (CPES) datasets from past surveys in England with data held in the cancer registrations database. This linkage work includes CPES surveys from 2010, 2011-12, and 2013. There are plans to link 2014 survey data in due course. The project initially describes these data for future analytical use to extend the possibilities of cancer patient experience data, in particular exploring links between experience and outcomes. Visit the NCRAS website to read reports from this project.

We will be carrying out further analysis of this dataset in 2016 to expand our evidence base and expertise in patient experience and outcomes. This will influence our work across the organisation.