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New National Diabetes Experience Survey – have your voice heard and help shape future care

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The first ever National Diabetes Experience Survey will invite over 100,000 adults living with type 1 diabetes or type 2 diabetes in England to tell the NHS about their experiences of care. If you are invited, please don’t miss the opportunity to make your voice heard and help the NHS to better understand what it is like to live with diabetes.   

Launching Monday 18 March, the survey will provide an opportunity to embed user voices into the development of policy and practice.

NHS England are looking to understand experiences to support the development of more person-centred policies for delivery of healthcare services for people with diabetes. The survey will be used to help local diabetes services make improvements based on what really matters to people living with diabetes.

The survey questions and sample has been carefully designed to get responses from a diverse range of voices so that the findings are representative of people who live with diabetes.

People will be randomly selected to take part from a spread of different and areas and demographics from March 2024.

Your views can make a difference in shaping future NHS diabetes care in England. We would like as many people as possible to respond to the invite so that the results reflect the views of different people living with diabetes. Whoever you are, whichever services you access, and whatever your experiences of living with diabetes, your opinion is important.

The results will be available in Autumn 2024.

Co-designing the survey

NHS England developed this important new survey together with people living with type 1 diabetes and type 2 diabetes, carers of those living with diabetes, healthcare professionals, and local providers. Together, they form the survey's Advisory Group.

Explaining why this survey is important, Dr Sophie Harris, Chair of the Advisory Group, Diabetes Clinical Lead and Consultant, said: 

“I strongly believe that all people living with diabetes should be given the right support to live a long and healthy life. But we know that there are inequalities in healthcare outcomes and experiences. This survey is our bridge to understanding the “why”.

"It will give people living with diabetes the chance to have their voice heard. The survey results will help us to understand the barriers that people face. This means that I, and other clinicians, can better support and communicate with people living with diabetes in the future.” 

Carmen, who lives with type 2 diabetes and sits on the Advisory Group, said:

“l am living with type 2 diabetes, a few years after I developed gestational diabetes. I have dedicated the last 18 months to a diabetes Advisory Group, together with other people living with type 1 and type 2 diabetes to develop a National Diabetes Experience Survey.

"I joined this group to ensure that people living with diabetes would be fully supported and receive guidance from clinicians, and for clinicians to be aware of the concerns they may have.” 

We have been involved from the very beginning of the development of this survey, including establishing the aims, prioritising areas to be explored in the survey and writing questions in a way that is accessible and give people with diabetes the chance to share their experiences in a meaningful way.

We have been clear from the outset the need for all questions to enable real, significant changes to the care that people with diabetes receive.

Taking part

If you are invited, you will receive a letter with information about the survey.

If you need support completing the survey or need it made available in another language, you can call the free helpline number 0800 470 2983, email diabetessurvey@ipsos.com, or visit www.diabetessurvey.co.uk/accessibility-and-language.

For more information on the survey please visit www.diabetessurvey.co.uk.

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