Know Type 1

I’ve been aware of diabetes for most of my life. My mother taught nurses about diabetes, and I made documentaries about the condition when I worked at the BBC. Yet when it was right under my nose, I missed it, almost losing my son in the process. Sam was 13 years’ old when he began suffering from constipation, which prompted repeated visits to our local GP, who thought that Sam wasn’t eating enough fibre. Despite my assurances that Sam was getting plenty of it, they proceeded to offer dietary advice in a bundle of leaflets. When this failed to make any impact to Sam’s health over the following weeks, they turned to the first in an array of laxatives, much to Sam’s alarm.

From then on, Sam spent most of his time  at home dozing and looking increasingly strained. One morning, I had happened to walk in on him leaving the shower and was immediately taken aback as he was nothing more than skin and bone. My wife rang our local surgery asking for an emergency appointment and was offered one in over a week’s time. By then, I was so alarmed that I rang back and told them that we were on our way down and that we didn’t intend to leave until we had been seen.

Luckily, we saw a GP who took one look at Sam as he struggled to get onto the bed, and immediately performed a fingerprick blood glucose test. In under a minute, they announced that we had a very ill young boy with type 1 diabetes. Sam’s blood glucose was very high and he was in severe diabetic ketoacidosis (DKA). He was taken to hospital immediately. Had we waited another day as we had been advised, we could have lost him.

We arrived home from hospital a few days later with pens, insulin and test strips. It took a good few months for the enormity of the diagnosis to sink in; the slow realisation that things were different and that our lives had changed. The dramatic start we had could have been avoided, it could have been easier, and the three of us struggled to make sense of what this diagnosis would mean. But at least we were fortunate enough to be able to start our new life with type 1 diabetes.

Some families aren’t so lucky. Peter Baldwin, also 13 years old, had been unwell following a busy Christmas. His mother Beth took him to the local GP practice where he was diagnosed with a chest infection. Over the days that followed, Peter became so ill that his mother called an ambulance. When paramedics arrived they immediately did a fingerprick blood glucose test and announced that Peter had type 1 diabetes. Sadly in Peter’s case, his DKA was too severe and he died in hospital.

Around one in five children with type 1 diabetes is diagnosed when they are already in DKA. A child presenting with the early stages of type 1 diabetes may appear “slightly unwell” and will not be acutely ill until their condition has become very serious. Many of the symptoms of type 1 diabetes can be easily confused with a host of other childhood conditions. Not every child will present with the classic symptoms of type 1 diabetes (increased thirst, urination, tiredness and losing weight, also known as the 4Ts – toilet, tired, thirsty, thinner [Figure 1; available for download at: www.diabetes.org.uk/the4ts]), and the symptoms of diabetes can easily be attributed to viruses, infections or even puberty. By asking whether any of the symptoms are present, a GP can recognise when it would be appropriate to perform a fingerprick blood glucose test for undiagnosed type 1 diabetes. When type 1 diabetes is suspected, an immediate fingerprick blood glucose result over 11 mmol/L will indicate that same-day referral to the specialist paediatric diabetes team is required (Figure 2).

My experience brought me to Diabetes UK Cymru with the ambition to raise awareness of the symptoms of type 1 diabetes and to help other families. Thanks to the Baldwin family’s incredible fundraising, we are raising awareness of the dangers of late diagnosis of type 1 diabetes and will be launching our Know Type 1 campaign this summer as part of Diabetes Week (Know Diabetes. Fight Diabetes, 11–17 June 2017). As part of the campaign, we’ve developed a video with the support of the Welsh Government, starring David Millar-Jones, Chair of the PCDS. The video, specifically aimed at primary care staff, helps to raise awareness of the dangers of late type 1 diabetes diagnosis. The video, and videos for the public, will be available from June 2017 via the Diabetes UK website (www.diabetes.org.uk).

If you’re ever in any doubt about what is wrong with the child in front of you, please think about the possibility of type 1 diabetes; you could save a life.