The National Cancer Patient Experience Survey provides the only national measure of cancer patient experience in England and seeks to understand a patient’s experience through their diagnosis, treatment and care.

Thursday 31 January 2019      Policy and campaigns blog
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Why is it important to breast cancer patients? 

The responses are extremely important in driving tangible improvements to cancer services for patients on a local and national level. For example, it is because of data collected through the National Cancer Patient Experience Survey that we know that having access to a Clinical Nurse Specialist is the single most important factor for a positive cancer patient experience. This insight means we can campaign to ensure this remains a priority for NHS England and Government. 

The current cancer strategy commits to putting patient experience on a par with clinical effectiveness and safety, recognising that improving patients’ experience of care is fundamental to improving outcomes. The National Cancer Patient Experience Survey is the only measure that exists to hold the NHS in England to account on this. 

The National Cancer Patient Experience Survey under threat

Over the past 18 months, we have been working with other cancer charities, NHS England and the Department of Health and Social Care to ensure that the National Cancer Patient Experience Survey stays as it is in light of changes to the way in which data is handled. 

The National Data Opt Out was introduced to allow patients to opt out of their confidential patient information being used for research and planning. We believe it is extremely important that patients understand and have control over how their data is used. However, using data is crucial to help services improve, as being able to contact patients means they can feed back on their experiences and highlight local issues. 

We were concerned that the opt out would have affected the number of people who complete the National Cancer Patient Experience Survey. This would have introduced an unwanted bias to the data, meaning that we wouldn’t have been sure that everybody’s views would have been fairly represented. It would have meant that we wouldn’t be able to compare any new results with previous years’ results. It is really important for us to know, for example, that patient experience is improving year on year, as well as any areas where challenges exist. 

Patient experience at the heart of improving cancer services

We worked with other cancer charities to ensure that the impact of these changes would not affect the National Cancer Patient Experience Survey by asking for a permanent exemption to the National Data Opt-Out. 

This month, we found out that we were successful when the Minister for Cancer, Steve Brine MP, announced that the National Cancer Patient Experience Survey would be permanently exempt from the data opt out so the survey can continue as it is. 

We are delighted with this news. It shows a renewed commitment from Government to put the patient voice at the heart of improving cancer services. 
However, the National Cancer Experience Survey isn’t perfect. The experience of patients living with secondary breast cancer is not accurately reflected, so we will continue to work with NHS England to improve this. 

What’s next

If you want to get involved in our policy and campaigns work, sign up to the Breast Cancer Now Action Network on facebook.