I was diagnosed with type 2 diabetes on the 14 May 2009, my Dad’s birthday. I didn’t mention it when I called him to wish him all the best. Type 2 makes you feel so alone because your first thought is, ‘I have done this to myself’. It’s embarrassing. Subsequently the information you are given about genetics and evolutionary biology give you an argument about why it isn’t all your own fault. You get angry at the supermarkets and restaurants that have thrived on your illiteracy about food. But you can never shake the knowledge that if you watched what you ate and did more exercise you wouldn’t have type 2 diabetes!
Doctors tell you to self manage diabetes but the tools to make it easier aren’t available. I want a single secure place, online, to store all my information about my diabetes. I want to know what my previous HBa1c (long-term blood sugar tests) and cholesterol levels are. I want to know when my last eye appointment was and reminders for the next one, and I want the GPs to be able to see this too so I don’t have to keep pissing around with new prescriptions for the same drugs that they keep getting wrong.
The lack of coordination is staggering. I want to control my information and I can’t. The current system makes my life harder, not easier. I can understand the frustration that drives people who are already depressed and alone to take drastic measures. Give me access to my data in usable electronic form and I will use it better than the NHS.