Within a two week period, I was dealing with the same issue on opposite ends of the world. Firstly, I
ranted wrote about a child being told that his pump would be ‘taken away from him’ because his A1c was too high.
Then the following week at a conference far, far away, I was speaking with someone who can’t access a pump because her A1c is too low.
So apparently, if your A1c is high, you get your pump snatched away from you and if your A1c is in target, you’re not eligible for one.
Can you see what’s wrong with this picture? In both instances the decision as to whether or not a particular treatment option is being advised is based purely on a number. No consideration is given to things like quality of life, a desire for more flexibility, a desire to try something new or a love of gadgets. Or the simple ‘Because. I. Want One. Dammit’.
No – a number that provides nothing more than an average is being deemed the criteria for recommending (or removing) a therapy option.
Also, the decision for which management therapy will be utilised is being made not by the person living with diabetes, but their healthcare professional.
How do we win here?
I will never stop advocating the rights of people with diabetes to be THE person who gets to choose the way they manage their condition. But sometimes I feel the uphill battle gets harder and harder with more and more obstacles being put in the way and more and more hoops for us to jump through (metaphor much?).
There are days I really feel like throwing my hands in the air and admitting defeat. The more stories like this I hear, the more disheartened I become. When and how will the person with diabetes be put front and centre in the decision making process about their own diabetes? When will numbers stop being criteria to assess success or determine appropriate management? When will the threats stop and the judgement end and true collaboration begin?It’s time for us to say: Diabetes – my condition; my rules!