It’s the fifth annual Diabetes Blog Week, with thanks to the lovely Karen Graffeo from Bitter~Sweet Diabetes. The first topic for the week asks us about the diabetes causes and issues that really get us fired up. Here’s what I have to say! Come back tomorrow for the next instalment, and in the meantime, check out #DBlogWeek and follow along!
I am not in any way foolish enough to believe that what I write on this here little blog or the work I do as a diabetes consumer (patient) advocate has the ability to change the world.
But I am confident enough to believe that my messaging is strong and that I generally stay on topic.
There are many things that I feel passionate about when it comes to being a diabetes advocate, but nothing more so than who is in charge of driving the diabetes bus. And that is the person with diabetes.
There is so much written about patient-centred care. Google it and you’ll come up with a…well a google of links. But despite much of it talking the talk, I’m not sure that it really walks the walk. The idea of patient-centred care is often at odds with policies and procedures of healthcare settings making it difficult for the person with diabetes (or other medical condition) to really be in the driver’s seat.
For the person with diabetes to be truly in control (and I’m not talking control in the sense of their BGLs, I mean in the sense of decision making) everyone needs to really subscribe to the model where the patient is smack bang in the middle of the picture, directing traffic, and making the ultimate decisions.
This doesn’t mean that it is done in isolation. No. It’s the exact opposite really.
It means that with support from HCPs, from diabetes organisations, from peer groups and from the health system, the person with diabetes is armed with all the information needed, given the right guidance, shown all the choices. And then, with all of this, they make a decision as to what they believe is the best thing for them. Nothing is withheld, everything is discussed, all options are in the table and considered.
I have too often had the options taken away from me. While I am pretty good at standing up for myself, it is exhausting at times to have to fight for my care to be the way I want it to be. And it’s frequently when we are at our most vulnerable that we have to fight the hardest. Hospital admissions (planned or emergency), times of extreme diabetes burnout or when we’re struggling to stay on track are the times that we often need to stand up for ourselves…even if we don’t have the energy, the inclination or the desire to.
When push comes to shove if I am charged with dealing with this condition 8,736 hours a year, then I AM driving this bus. The role of the support team around me is to give me suggestions and options about how to navigate, but then let me decide if I’ll turn left or right. And come along for the ride – even if they don’t necessarily agree with the road I’ve chosen.
Today, I’ve also written a post at the Diabetes Australia – Vic blog about another cause close to my heart – The Diabetes Stigma Project. Have a read!