Diabetic ketoacidosis, also known as DKA, is a serious complication of diabetes which arises when there is a severe insulin deficiency. This is what happened to Lyla Story, a two-year old girl from Hull, who sadly died after being diagnosed with acute tonsillitis when the signs of Type 1 diabetes were missed. Before we held a debate in Westminster on the topic of testing for type 1 diabetes in infants I met with John Story, Lyla’s dad and the creator of the petition which sparked the debate.
He has been campaigning tirelessly for “Lyla’s Law”, which asks for more public awareness campaigns on recognising the signs of type 1 diabetes, for information to be included in the Red Book for babies, and for the NICE guidelines referring to the diagnosis of diabetes to be legislated. NICE, standing for the National Institute for Health and Care Excellence, provide guidelines and standards for practitioners to follow, and are not legal requirements.
Currently, the NICE guidelines are from 2015 and must be certainly due for a review and an update. Updates could include recommendations that type 1 diabetes is tested for earlier, when symptoms first show and to emphasise that a patient does not need to be showing all four “Ts” before testing. Through early and regular testing, hopefully, devastating cases like Lyla’s will never have to happen again.
Diabetes UK are the leading charity working to spread awareness of the symptoms of diabetes, while also investing millions into diabetes research. Their campaign on the 4Ts aims to help everyone, parents and guardians included, to recognise signs of type 1 diabetes. In the words of Diabetes UK, these are:
– Toilet – going for a wee more often, especially at night.
– Thirsty – being constantly thirsty and not being able to quench it.
– Tired – being incredibly tired and having no energy.
– Thinner – losing weight without trying to or looking thinner than usual.
If a child or adult starts showing any of these symptoms, they should see a GP urgently or go straight to the Emergency Department (A & E) if symptoms worsen or are severe. A point of care capillary blood test can be conducted; this test is a simple finger prick blood test that can pick up signs of diabetes, and this test only takes seconds.
It is important to note that you do not need to be showing all of the “4Ts” to suspect that you have type 1 diabetes, and that it is vital that symptoms are assessed on the same day they are noticed. The appearance of other illnesses which have these common symptoms, can delay diagnosis of type 1 diagnosis, which is tragically what happened to Lyla. Young children can also find it hard to express what symptoms they are experiencing, which can also block early diagnosis.
Currently in the United Kingdom there is no national screening programme for type 1 diabetes, however, there is an ongoing screening study named ELSA, which stands for “early surveillance of autoimmune diabetes”. The study’s researchers hope that by screening children for antibodies, they could reduce diabetic ketoacidosis cases in children, as a over a quarter of children aren’t diagnosed with type 1 diabetes until they are in diabetic ketoacidosis.
I spoke to the Royal College of General Practitioners who advised me that they have reviewed their curriculum and continuing professional development resources to ensure that type 1 diabetes information is clearly available. However, recent surveys from the Royal College of General Practitioners have shown that 64% of members say they do not have enough time to undertake training or continuing professional development alongside their practice work, and 73% of members reported that patient safety is being compromised by workload pressures. This is alongside the fact that the average GP for over 2,300 patients, 16% more than 2015 figures.
The petition that Mr Story started, and Lyla’s story, have highlighted how crucial it is to improve diagnosis of type 1 diabetes, not only in infants, but across all ages. His tireless campaigning for more awareness of type 1 diabetes symptoms in the general public, as well as doctors, is to be commended. Type 1 diabetes can develop at any point during a person’s life. It is not linked to lifestyle, and it is key that symptoms are not missed or mistaken for other diseases.
