What Scotland’s Cancer Patient Experience Survey means for Macmillan

The results of Scotland’s first ever Cancer Patient Experience Survey (CPES) is the culmination of years of campaigning and work for Macmillan.  A person’s experience of cancer care and support is just as important as the treatment they receive, and having the survey recognised as an Official Statistic gives us confidence the findings will help to shape the future of cancer care and delivery in Scotland.

The survey captured the views of people who had an inpatient stay at a hospital and a cancer diagnosis between January and September 2014, and just under 5000 patients took part.

The most significant finding from the survey for Macmillan was that patients who had a care plan had markedly better experiences than those who didn’t, on all of the 50 questions where the responses were classed as positive or negative.

The differences were especially stark when it came to the non clinical needs of the patients, so for example, support from health and social care services during treatment and after it had ended. They were also more likely to say that they had received the financial advice they wanted.

This is important to Macmillan as we provide support to people affected by cancer, from the moment they are diagnosed, to treatment and beyond. The findings provide us with evidence that the information and support services we provide are just as important to patients as their treatment and care. Additionally, it supports our current political campaigning work, which calls for everyone with cancer in Scotland to have a care plan.

CPES also highlighted how important it is for health and social care services to work together, delivering integrated person-centred cancer care, both at a national and local level. This is essential so that the Government’s health care agenda is reflected in people’s experience of cancer care and treatment.

The next steps for CPES will see Scottish Government working with the Health Boards on any areas where improvements might be made. Our next step is to support those discussions, and to start working with our service teams to see if there are any areas where we can help improve the delivery of our cancer care and support in Scotland. In particular, how we can work better with health boards and partner organisations to make sure the care people receive is more consistent across the country.

The survey also had seven sections where people were able to write their own views on their experiences of cancer care. This analysis will become public in the first half of July 2016. Over the coming months, we want to cross-check this qualitative data with the already published findings to see how these match up and where there are any differences or insights which emerge.

The Scottish Government’s Cancer Strategy, which was published earlier this year, pledged there would be future Cancer Patient Experience Surveys. Although there have not been any dates yet set for when the next one could be, if there are more surveys in the future, it will become easier to build awareness of the progress being made in meeting the care and support  needs  of people with cancer.

By Kelly Shiell-Davis, Macmillan Cancer Support, Senior Evidence Officer

Kelly’s job finds her working with wider partners to generate, translate and disseminate all types of data for Macmillan including  health administration, programme evaluation, and population data.

Read the Cancer Patient Experience Survey report