National Diabetes Experience Survey results released

The first National Diabetes Experience Survey gave people living with diabetes the opportunity to share their experiences of diabetes care. It reveals that people are having a positive experience at their annual review and feel confident using devices to manage their diabetes.

The results of the first National Diabetes Experience Survey have been published. They will be used to help the NHS improve experiences of self-management and care for people living with diabetes. The survey was developed with people living with type 1 and type 2 diabetes, carers of those living with diabetes, healthcare professionals, and local providers.

The survey covers a range of areas within the patient pathway, including diagnosis, the annual review, the last NHS appointment, experiences of living with diabetes and experiences of using devices to manage their diabetes.

The infographic (below) and national report (downloadable from the survey website) outline the headline findings.

What do the findings tell us?

Not recognising the symptoms of diabetes caused a delay to diagnosis: 

  • Around half of people living with type 1 or type 2 diabetes did not recognise the symptoms of diabetes, which caused a delay to their diagnosis (51% of those with type 1 and 52% of those with type 2 diabetes).

People were positive about their experience at their last annual review: 

  • 78% of those with type 1 diabetes reported that they had a good experience at their last annual review. 
  • 84% of those living with type 2 diabetes reported that they had a good experience at their last annual review.

In terms of the impact of living with type 1 diabetes: 

  • Three in five (61%) agree that their diabetes is a constant worry. 
  • Over two in five (43%) report that their diabetes stops them being as physically active as they would like to be.
  • A third (32%) say that they are financially worse of because of their diabetes. 
  • Three in ten (29%) feel that their diabetes stops them having the social life they want.

In terms of the impact of living with type 2 diabetes: 

  • Almost two in five (37%) agree that their diabetes is a constant worry.
  • Three in ten (31%) feel that their diabetes stops them being as physically active as they would like to be.
  • Just over one in five (22%) agree that their diabetes stops them having the social life they want.
  • One in five (19%) report that they are financially worse off because of their diabetes.

People were confident in managing their diabetes: 

  • Over the last 12 months the majority of people living with type 1 diabetes (83%) or type 2 diabetes (83%) feel confident managing their diabetes day-to-day.
  • The vast majority (96%) of people living with type 1 diabetes use a device to manage their diabetes and 95% of those using a device feel confident in doing so. 
  • Less than half (46%) of those living with type 2 diabetes use a device to help manage their diabetes. Of these, the majority (92%) report feeling confident in using a device.

Where can I find out more information? 
The National Diabetes Experience Survey results are available at a national and Integrated Care System (ICS) level. Visit https://www.diabetessurvey.co.uk/latest-results to find out more.

For ICS specific results, take a look at the ICS slide packs, which bring together ICS data for key questions in one report. This also includes an example of the types of demographic breakdowns which are available for all questions in the data tables.

Technical information 
The survey received 42,502 responses from those living with type 1 or type 2 diabetes in England. This includes 33,440 questionnaires completed online. The survey has a national response rate of 39%

The fieldwork of the survey (the period in which surveys are sent and returned) was undertaken between 18 March to 16 July 2024.  

For more information, please contact the National Diabetes Experience Survey team.

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