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.
Thanks for the shout out Frank. In relation to the session I attended what really, really annoyed me 🙂 was that they were unable to define non-adherence. If they’d said we define non-adherence as not having any blood glucose testing data, not doing x number of tests per day or whatever, I’d have thought harsh and I disagree but at least it’s transparent & stacks up as a piece of presented research. As it was they are discharging people for being non-adherent because “they just know” they are!! This is in addition to the quite significant number of people they discharge for not responding to 2 phone calls.
I am sitting here trying to respond Mel … but am speechless. Oh wait … found some! Why are people ‘discharged’ from a service anyway … isn’t diabetes for life? HCPs need to ask themselves what am I missing when people are finding it hard to do their self care. Leaving the door open is the most important part of working with people with diabetes…I’ve even been known to send a Christmas card to people who haven’t come back but I know they are not coping with everything. It is just a little contact to keep the door open.
I love the idea of sending a Christmas card, Jayne! You are a true champion for people with diabetes.🙌
You’re welcome, Mel. I think it would be easier for us to get our point across if we had some idea of what ‘non adherent’ actually meant.
I have overheard that pursuit of a low-carb diet is considered by some to be ‘non-compliant ‘. Really?
Hello Frank! I’m eavesdropping from the wonderful world of cardiology out there. I follow Melinda on Twitter so saw her original posts, and then on Twitter I was absolutely gobsmacked by the hostile and superior attitude of the CEO of a major diabetes society who accused her of “personally attacking” the conference speaker (which she most certainly was NOT doing) and then accusing her of being disrespectful and unhelpful. And when she replied (way more polite than I could have managed to remain) by explaining that as a patient with T1D she had “skin in the game”, he doubled up his hostility by essentially blaming her for not understanding his own hard life as an academic. It was bizarre…
All this sputtering because Melinda had the temerity to suggest that firing your patients for being non-compliant when you don’t even have a clear definition of non-compliance is NOT good care. That’s pretty obvious. She was obviously criticizing the program, not the speaker. And how ironic that another speaker at the same event was suggesting a truly patient-centred care in another room!
Although I write about women’s heart disease, and not diabetes, I suspect we share a lot when it comes to the “C” word – c-c-c-c-compliance. How I hate that word!! As one of my blog readers once said, it sounds like it has punishment at the end of it… In the cardiac community, it’s mostly about taking and/or not taking the fistful of cardiac meds we suddenly have to take for the rest of our lives. There are many many reasons that heart patients stop taking their meds (none of which involve the lack of a beeping flashing pillbox or a trackable pill that contacts your doctor every time you DO take it (no matter what the tech hypesters insist!
Excellent post, Frank – and highly applicable to other people living with a chronic illness.
Yeah, tossing people out of practice because of non adherence is sort of like removing kids form school to teach them a lesson Surely there are better ways?
as a health professional myself- I am a practicing optometrist- I see that every day with my colleagues who brush off diabetic patients and remark on their weight and their non-compliance to the right carb counting and so on. Being diabetic and living life and working and dealing with the ongoing managing of this chronic condition is full on and these professionals need to – quoting you 🙂 – put themselves in the shoes of someone with diabetes.
I have had the unfortunate experience of working for real major icon optometrist companies and when I have had enough of not being allowed my half hour break at lunch,I have mentioned (after proving my worth as a professional) that I am a type1 and breaks are important,ONLY to have the manager of that optical place knock on the consultation room and asking ” can I move your lunch ? just one more patient….these professionals who give their speech need to understand that non-adherence is very compound as a result of many many things.
You are so amazing at communicating this across your blog : THANK YOU