Understanding experiences of living with diabetes: a national survey

The National Diabetes Audit (NDA) provides a clinical view of diabetes care in England and Wales, and evidences variation in the achievement of diabetes care processes and treatment targets. However, no national measure of patient experience exists to understand this variation.

The National Diabetes Experience Survey, a new national survey of people living with type 1 or type 2 diabetes, has been created to address this gap. The survey will provide an opportunity to harness user voices into the development of policy and practice. It is our view that experience data is powerful in informing impactful change and improvement to quality of care. I would strongly encourage anyone who receives the survey to fill it in and send it back as soon as possible so that we can ensure their voice is heard.

The importance of codesign

Codesign with people living with diabetes has been vital in developing the National Diabetes Experience Survey, focusing on what matters most to people with lived experience. It is our view, and the view of the lived experience partners, that codesign is essential in creating a relevant and impactful survey.

In addition, an extensive qualitative research study about experiences of living with diabetes was carried out with around 150 people. This has informed the content of the questionnaire, and the findings will be brought together with survey results to develop a more holistic understanding of people’s experiences

Alongside collaboration with people living with diabetes, we have engaged key stakeholders to ensure the survey will provide useful and actionable data. This has focused on discussions with data users, including Integrated Care Systems, diabetes charities, clinicians, and policy makers.

“As people living with diabetes, we have had significant input into how this survey has been put together. Our voices have helped to make this survey a relevant and important turning point in the improvement of care and support for everyone living with diabetes. By completing the survey, your input will be added to our voices. Everyone involved in the provision of care for those living with diabetes will hear us loud and clear and know exactly where change is needed to provide the best possible diabetes care and support in our journeys through the NHS.”

Lived experience partners for the National Diabetes Experience Survey 

More information about the survey development will be available on the survey website from 18 March 2024.

Survey methodology

From March 2024, around 105,000 people living with type 1 or type 2 diabetes will be invited to take part in the National Diabetes Experience Survey.

The survey aims to measure experiences of diabetes care and self-management, providing data that can be analysed by different demographic groups and type of diabetes to understand any inequalities in experiences. The data will also be used to develop a segmentation of people living with diabetes, based on the attitudes and behaviours reported through the survey. The segmentation aims to identify the needs of different groups of people living with diabetes, so that in turn, we can tailor services and support to meet these needs. In addition, data from the survey will be brought together with other secondary datasets, such as the NDA, aiming to develop an understanding of the link between experiences and outcomes.

From Autumn 2024, the results will be published at national, Integrated Care Board (ICB), and sub-ICB level.

This survey aims to help NHS England understand variation in experiences of care and outcomes. It provides an opportunity to impact policy development and commissioning, and have a real-world impact by designing diabetes services based on what really matters to people. When the survey opens in March 2024, it will give people living with diabetes the opportunity to share their views.

Photograph of Dr Clare Hambling

Dr Clare Hambling is a GP with an interest in diabetes, cardiometabolic disease and long term conditions.

She is the NHS England National Clinical Director for Diabetes and Obesity.