Knowledge is power in diabetes self-care

Living with a long term condition can be difficult and stressful. Whilst we all strive to provide optimal care for our patients the reality for those living with Type 1 diabetes is that on average, they will spend around 2-3 hours with a healthcare professional every year.

Access to trusted information, resources and support is key to helping people to manage their condition. Arming people with the knowledge and skills to look after themselves, so they can prevent complications and deterioration is paramount. However, there is a lot of advice online when it comes to Type 1 diabetes and it can be hard for those newly diagnosed to know exactly where to turn and which sources to trust.

That’s why we’ve worked with NHS Digital, Diabetes UK and people with Type 1 diabetes to develop an online space where people can find the information that they have told us is important to them. We hope that providing an online resource with all the useful links in one place will help people with Type 1 diabetes gain the knowledge and confidence to manage their condition.

The new Type 1 diabetes online resource is a simple and effective way for those newly diagnosed with Type 1 diabetes to learn about the disease and to understand how to manage it most effectively.

We’ve carried out research and interviews with people who have Type 1 diabetes to find out their experiences of living with it. Many of them said they wanted to know where to access more information, how their diabetes may change throughout their lifetime and how to meet others with the same condition.

We’ve used this insight to shape the content of the site, so that we’re offering practical help on injecting insulin and checking blood glucose levels – as well as useful advice around actually living with the condition. For example; how the disease may affect driving, going to university, exercise and sport and pregnancy. The site also includes links to psychological help and support (three out of five people with diabetes living with diabetes experience emotional or mental health problems as a result of their condition).

Over the last few months we’ve conducted a soft-launch of the site via NHS Choices with an option for users to provide feedback on the content. Among other things, we wanted to find out whether people found what they were looking for, whether the information encouraged people to learn more about their diabetes and if the information provided on the site could avoid unnecessary contact with health professionals.

Feedback from users has been positive, 96% of responders to our survey who had or knew someone with T1 diabetes found what they needed on the site, with a number reporting they would otherwise have visited a health care professional.

Now the site is officially live, we hope even more people will access this resource and we urge healthcare professionals to point people with Type 1 diabetes and their parents or carers to the site which we will continue to add content to so that it remains relevant to account for the community’s changing needs.

Providing this one stop shop so to speak, is in everyone’s interest.  Ultimately we hope this resource and the corresponding upskilling will lead to a reduction in emergency admissions as well as unnecessary GP appointments.

Professor Partha Kar

Professor Partha Kar is National Specialty Advisor, Diabetes with NHS England and co-author of the national Diabetes GIRFT report.

He has been a Consultant in Diabetes and Endocrinology at Portsmouth Hospitals NHS Trust since 2008- and pioneer of the Super Six Diabetes Model which is recognised as one of the good examples of integrated care.

He has helped to expand use of technology in Type 1 Diabetes- namely use of Flash Glucose in Type 1 Diabetes and CGM in Type 1Diabetes pregnancy along with online digital self-management platforms- while recently leading on real world data collection on Closed Loops for subsequent NICE review. He has worked subsequently with NICE on updating relevant guidelines in non-invasive glucose monitoring access in Type 1 and Type 2 Diabetes.

His other work has involved introduction of frailty into QoF treatment targets, Diabulimia pilot projects in the NHS; championing “Language Matters” and helping to create an overview of Diabetes care in Primary Care Networks. Recent work has focussed on transitional care models- as well as tackling inequalities in technology access based on deprivation and ethnicity.

He is one of the leading users of social media in diabetes care – and writes a monthly blog for the British Medical Journal.

He has also been:

  • Co-creator of TAD (Talking About Diabetes) – TED talks from those with T1Diabetes
  • Co- creator of Type 1 Diabetes comic (Volume 1 to 4)
  • Co-creator of DEVICES (Virtual Reality educational modules in diabetes)

Beyond diabetes, he also recently taken a role in tackling issues of racial disparity in the medical workforce as the Medical Workforce Race Equality Standard lead for NHS England. He has also been named as one of the most influential BAME individuals in healthcare in 2020,2021 and 2022.

Follow Partha on Twitter: @parthaskar