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.

Partha Kar

Professor Partha Kar is National Specialty Advisor, Diabetes with NHS England and co-lead of Diabetes GIRFT with NHS Improvement.

He has led and delivered so far on (April 2016- till date):

  • Freestyle Libre being available on NHS -across country
  • NHS Right Care Diabetes pathway
  • Diabetes “Language Matters” document
  • Type 1 diabetes NHS England web-resource – on NHS choices
  • Introduction of Frailty into QoF treatment targets for diabetes care in NHS
  • Availability of CGM to all T1D pregnant patients
  • Diabetes Technology pathway development with multiple stakeholders
  • Setting up pilot projects for diabulimia treatment in London & Wessex
  • Introduction of Low Carbohydrate App into NHS Apps Library

Other work has involved input in updating of driving guidelines in relation to use of technology in those living with diabetes, helping to develop a virtual reality programme to improve hospital safety and starting work on increased mental health access for diabetes patients across the NHS

Professor Partha Kar has been a Consultant in Diabetes & Endocrinology at Portsmouth Hospitals NHS Trust since 2008. He has been the Clinical Director of Diabetes from 2009-2015, being part of a multiple national award-winning department (HSJ Awards / BMJ Awards) due to its services and care provided.

He is the pioneer of the Super Six Diabetes Model which aims to deliver diabetes care differently and is recognised as one of the good examples of integrated care.

An avid user of social media such as twitter (@parthaskar) to engage with patients – and been recognised as a “Social media Pioneer” by HSJ in 2014.

He also writes a monthly blog for the BMJ, has a personal blog (“Sugar and Spice: Wish all things were nice”) and a podcast (“Sweet Talking”)

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 and 2)
  • Setting up Type 1 Diabetes: Rise of the Machines – event on Closed Loops/DIY tech

Follow Partha on Twitter: @parthaskar

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One comment

  1. David Mapletoft says:

    It’s great to see others are finally catching up with what we’ve been doing online in Australia since 1999

    Congratulations on a great resource.