Wednesday 28th October 2015

Patient experience

The views of cancer patients have been a hot topic across the NHS this month with the launch of Scotland's first ever National Cancer Patient Experience Survey, the publication of results from the inaugural Northern Ireland version, and continued discussions in England and Wales on their recent surveys. 

This builds on increasing recognition that patient experience is a key pillar of quality health care – it's now seen as equally as important as patient safety and clinical outcomes. The development of patient experience surveys and other outcomes measures are one example of this. 

National Cancer Patient Experience Surveys provide insights into the opinions of cancer patients from across a country and can identify trends. These could be differences depending on factors like location, cancer type, ethnicity or age. The surveys ask questions about all aspects of a patient's cancer experience, from diagnosis through to research, treatment and interactions with staff. 

There's no doubt that these surveys are an important tool in building a picture of what it's like to be a cancer patient in the UK, but it's vital that this information is used to drive improvements, and that all patients have the chance to have their voices heard. 

The UK picture

The results tell us that young people with cancer tend to have very different experiences of care to those of older patients, demonstrating how important it is for their opinions to be heard. Surveys from England have repeatedly shown that young people report worse scores relating to experiences with GPs, have less confidence in doctors, and report lower understanding of their condition and treatment. On top of this, teenagers and young adults often get some of the rarest forms of cancer, and successive surveys have also found that patients in some of the less common cancer groups also have poorer views of their treatment. 

  • 19% of 16-25 year olds saw their GP 5 or more times before diagnosis, compared to an average of 9%
  • 15% of teenagers and young adults felt they should have been seen much earlier, compared to an average of 7%
  • 49% of 16-25 year olds said they completely understood what was wrong with them when it was first explained to them, compared to an average of 74%
  • 58% of young people felt involved in decisions about their treatment, compared to an average of 71%

Department of Health (2014), National Cancer Patient Experience Survey


Surveys from Wales and Northern Ireland haven't been able to demonstrate key trends for young cancer patients because they've had too few respondents in the 16-25 age group.  It's really important for those governments to work to ensure more young people are asked about their experience in future surveys; this could be through developing more age-appropriate data collection methods, or working in partnership with those who deliver services to this age group to help promote the value of the surveys. 

Taking action

Collecting data on the experiences of young people with cancer is a positive step, but it's important that this doesn't happen in isolation. Where trends can be spotted, action is needed to address negative experiences and drive progress. 

Health care providers are encouraged to use survey data to review their services and drive local improvements. After the most recent survey in England in 2014, NHS England pledged to buddy up poor performing trusts with those who score highest. While this action is welcome in tackling broad regional variation, it's unlikely that it'll be enough to create real change for small patient populations such as young people or those with less common cancers. 

In response to feedback from young people with cancer through our own focus groups and using national survey results, we're developing our services to do all we can to improve their experiences. Our education programme seeks to empower young people with the aim of improving their diagnosis experience. Our recently launched information resource, Honest Answers and Sound Advice – A Young Person's Guide to Cancer, is designed to provide accessible and age-appropriate info to young people from the point of diagnosis.  And we're increasing the number of specialist staff we fund, both in principal treatment centres and outside of our units, to ensure that every young person with cancer has access to a key worker for the duration of their cancer journey who is trained in addressing the unique challenges that cancer in this age group can bring. 

What next?

It's clear that Cancer Patient Experience Surveys are a valuable resource for monitoring and improving patient care. But without a concerted effort to increase participation amongst young people with cancer and to expand the survey to capture the views of younger patients, the surveys aren't achieving their full potential. We'll continue to work with young people who access our services to seek their feedback and ensure it’s acted upon. We call on decision makers across UK governments and health systems to take the same steps.