Improving help for patients with type 1 diabetes on the NHS website

By Hayley Sorrell (user researcher) and Kim Darke (content designer), 25 September 2018

Screenshot of NHS.UK diabetes landing page

The National Diabetes Audit found that only 30% of people with type 1 diabetes have stable blood sugar, compared to 68% of people with type 2 diabetes. This means a higher risk of things like A&E visits and complications.

A team of us at NHS.UK looked at how we can help people with type 1 diabetes

What we learnt

Type 1 diabetes is a daily challenge. Blood sugar levels constantly change for many reasons, from movement or stress or the weather. It’s something you constantly think about and manage.

These are some of the main problems:

  • There is a huge amount to learn after being diagnosed

"At time of diagnosis, the information they gave me didn't make any sense – the most I understood were the pictures [on leaflets]"

  • Diabetes education is important, but most people can’t attend a course

"Main reason is time off work. If it was an evening course once a week, it wouldn’t be a problem."

  • Constantly managing diabetes can lead to anxiety and depression

"Consultants want to help psychologically but don't have time in an appointment"

  • People feel better supported when they have someone to talk to

"Being an active member of a community has helped me. It changed how I managed my diabetes... How I count carbs.  I became aware of the psychological side of the condition"

How we’ve tried to solve these problems

In July we published content to help people with type 1 diabetes understand what they need to do in the weeks after diagnosis. At this time people are often in an emotional state and struggle to remember what they’ve been told.

The content has clear actions and tells people only what they need to do. It links to more information to encourage people learn more when they’re ready.

It includes:

  • A hub page and new information architecture (IA) that helps people navigate through the content. It better reflects a person’s real life experience of type 1 diabetes. We use language we heard in our research and cover the topics user's said were important to them.
  • Content that talks about emotions and links to self-refer to psychological therapies.
  • Information on the importance of diabetes education and links to online courses as an alternative to week-long courses
  • Links to established groups on social media with some guidance on how to use them safely.
  • Instructional videos on how to inject insulin and test your blood sugar. A diabetes nurse replicates what people are shown at diagnosis.

There are many great sources of information on type 1 diabetes. We made sure not to repeat what’s already there and link to other sites where possible.

We’ve used the NHS website to guide people to the information they need and we’ve done the research on how to help them start their own learning process.  People trust the NHS and our research showed that people were happy linking to other sites from the NHS website.

Screen shot of an insulin injection video

Early results

We’ve seen that people respond well to the content in a lab, but we need to know how people are using the information in real life. We’re doing this by looking at a mix of analytics and survey responses.

So far:

  • 82% of people found some or all of what they needed (from 310 survey responses)
  • 4% of all visits click on links we recommend, this is double the nhs.uk average
  • 7% of people who go to our support content search for psychological therapies
  • 11% of people who see a link to diabetes online learning click
  • There are 50% fewer single page visits to these pages
  • 8.5k people have viewed the 'How to test your blood glucose' and 6.2k views for 'How to inject'. And around 65% of people watched them all the way through.

There are other needs

We know that information on NHS.UK forms part of someone’s journey. We know there is more to do to at a system-wide level to improve health for people with type 1 diabetes. For example, diabetes education is funded locally and many courses are over-subscribed. Centrally managed and referred courses could help reduce this problem. We also know that people struggle to access psychological therapies on the NHS. 

We hope sharing what we've learnt about this long term condition will benefit team's working on conditions with similar challenges.