Cancer Patient Experience Survey

The Cancer Patient Experience Survey (CPES) provides a patients’ view of the cancer care system. We use the results of the survey to better understand how patients feel about their care, and to identify what’s working and what could be done better.

What can the survey tell us?

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 survey has been running in England since 2010. Macmillan now partners with the Scottish and Welsh governments, the Public Health Agency, and Health and Social Care Board in Northern Ireland, to survey patients in the other three nations.

What are the findings?

CPES in England

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:

  • Socio-economic variation

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.

  • Specific cancers

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.


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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.

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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 difference in cancer patient experiences

A secondary analysis of 2015 Scotland CPES data explored the relationship between cancer experiences and a range of 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

Macmillan and the Scottish Government funded the University of Stirling to analyse the key themes of the free-text comments supplied by patients. Analysis of the 2018 results is still underway.

Analysis of the 2015 results found 2,500 positive comments, and almost 2,000 negative comments, among the 6,961 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

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.

  • Feeling their individual needs were unmet

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.

  • Problems in the lead up to diagnosis

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.

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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 planned.

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:

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