The one issue that stuck out to me after the recent Diabetes Congress is the need for a resource to better support people in the self management of diabetes in hospitals and even health care. Diabetes Australia are already leading the way with some of their position statements advocating for positive communication, with the view that people with diabetes should be supported in their chosen decisions, even if some of those decisions are ‘off label.’
But we still have a long way to go.
Last week at Twice Diabetes, Melinda wrote about a session at the Congress where she learned about a hospital practice of discharging patients for ‘non adherence’ and not responding to follow up contact.
It was a stark contrast to another session I had attended which investigated rates of response to follow up contact, in this case for diabetes screenings in rural communities. This session was absolutely non judgemental, venturing into possible reasons for patients not responding to follow up contact and a genuine desire to find better solutions.
I think what’s really sad for me is that in case studies like those presented in Melinda’s session, the voice of the person with diabetes obviously isn’t being heard. I guess I get frustrated because while I know, and have the confidence to be my own advocate, not everyone is able to. This is where we need healthcare professionals who are on our side. People who are willing to put their feet into the shoes of someone with diabetes, think about why they may be ‘non adherent’ and come up with solutions.
From where I’m sitting, outcomes like these could be greatly improved through better communication when talking about and with people with diabetes. On the surface, it might appear that we’re just being nit-picky in our choice of words when we harp on about language, but it’s about so much more than that.
So how can people who are working with people with diabetes, foster better communication among people with diabetes? Here are a few humble suggestions…
1. Create a supportive environment that invites us to share. Listen to us. Don’t judge us. From everything I’ve heard about language and diabetes, there’s one little gem that always sticks out to me. The person with diabetes may be making a decision that is very rational to them. But when we are scolded, cut short or made to feel uncomfortable those reasons are likely to go unheard. We’re more likely to go off and do it without support.
2. Uphold our name. Treat us with the utmost respect, even in our absence. While we might be ‘diabetics’ or subjects of work, we are also people with real feelings and beating hearts. Hold me in the same regard that I have for my own family when you’re talking about us around others.
3. Empathise with me. Much like you, I have a life. A family. A job. Bills to pay. A roof to keep over my head. I’m trying to do all of this while managing an extremely demanding, costly and time consuming chronic condition that I didn’t ask for.
4. Treat me as Frank, and not as Frank’s diabetes. Shake my hand. Greet me by my first name. ask me how I am. How I really am. I don’t want to feel the power trip when walking into my doctor’s office. I want to feel like I am catching up with a colleague or even leaning on the shoulder of a friend. It’s as simple as being a decent human being.
I’m not too big to admit that I too am a flawed individual, with much room for improvement. I don’t know what it’s like to be a healthcare professional, a researcher or someone working in the industry.
But I have been lucky enough to meet many amazing healthcare professionals who have a real passion for their work and for creating better outcomes for people with diabetes. What makes these people real champions of people with diabetes is that they always hold a high regard for lived experience, and are always willing to learn. That’s all that I really ask for.
I am only a person living with diabetes, who wants better outcomes for other people with diabetes who might not be as confident or as privileged as I am to obtain those outcomes.
I don’t think that is a lot to ask.