Beyond Diabetes 101

Melinda Seed writes for Twice Diabetes
Melinda Seed writes for Twice Diabetes

I’ve been thinking about diabetes education for what one diabetes educator calls “veterans”. It’s a topic that’s come up a few times on this blog and I’ve seen it raised recently in the twittersphere. What we’re talking about is not so much diabetes 101 but a PhD. in kicking diabetes butt. If we could define education using the wealth of experience aka hard knocks many in this community have experienced what do you think should be included? Are there better ways to deliver this than traditional healthcare? I’ve jotted down a few ideas, I’d love to hear others from everyone in the diabetes community.

Effective communication with HCPs. doctor listening

I’d really like to see courses in managing doctors alongside the usual offering in managing blood sugars!  This is a bit of a theme with me but I really believe that many of us would feel better about our diabetes and achieve better clinical outcomes if we overcame this power imbalance in communication.  Saying “yes doctor” works in an emergency but is just the wrong way to go in a self-managed, chronic condition like type 1 diabetes.

There is often a power imbalance when dealing with doctors. They assume the mantle of the expert as a matter of course and diabetes is quite a stigmatised disease so it takes a lot of skill and self-confidence to manage an appointment based on YOUR agenda rather than the doctors’.  It can be difficult to avoid becoming either passive or aggressive or both or sounding evasive or “guilty” when faced with loaded questions and one-size fits all “solutions” to diabetes management.  Finding a doctor that suits  your style definitely helps but doesn’t avoid the need to be able to manage an appointment yourself, and in many cases it just isn’t possible to doctor shop.

Managing the System & Health Economics 101

Know who’s who in the healthcare zoo and how to access help when you need it are important skills. I’ve heard horror stories of people waiting months for appointments, not seeing the right specialists, being out of pocket enormous amounts for things they should be able to get free or subsidised.  I think one of the biggest things to know is that it’s fine to seek a second opinion and you should not suffer in silence.  Knowing your way around referrals and the specialist versus GP scene is a skill worth developing. It also helps to have an ally, somebody who you can contact when the going gets tough and who will be prepared to go the extra mile.

Having diabetes is an expensive business. Learning about the relevant subsidies and how to access them and manage the system is a great skill to have.  Cost saving measures such as not changing your pump reservoir every time you refill it/change your infusion site and stretching the life of your lancet from 3 months to 6 (ok so this is about being lazy not thrifty) but it’s still useful to know.

Happiness Education IMG_0275I’d like to see training available on protecting your mental health with diabetes. This goes beyond just avoiding/treating mental illness but more on thriving, being happy etc with diabetes. Stuff like mindfulness, gratitude, avoiding or dealing with burnout, identifying and nurturing your own coping skills.

Diabetes is the gift that’s not only forever, but it keeps on giving.  Just when you think you’re doing well, something like hypo unawareness, retinopathy or carpal tunnel syndrome will rear its ugly head.  Living well with a lifetime of diabetes requires the ability to bounce back from setbacks. Time and again I’ve seen despair and helplessness when some sort of diabetes complication strikes.  Given long enough with diabetes and the prevalence and intensity of screening it’s likely that some form of complication will arise. We need the skills necessary to manage this and see it for what it is-usually a highly treatable thing that is not going to have an impact on our life at all. It is NOT the beginning of the end.  I believe the message “good control reduces your risk of complications” which is a great and helpful, hopeful message has become distorted such that many people believe complications are “your own fault”, this is enormously unhelpful and untrue.

Both people with diabetes and healthcare professionals need to be better at delivering a more nuanced message around control and complications. I’ve only scratched the surface here, what would you like to see in ideal diabetes education?

6 thoughts on “Beyond Diabetes 101

  1. Mel, once again you have hit the nail on the head, to coin a cliche. I feel that every Type1 needs a post doctoral degree in how to handle medical and nursing staff when in hospital. Having just had major surgery (successfully) I have had the misfortune to come up against doctors who complained when I took over my D management, because it was easier for them to have me on a one size fits all infusion. Unfortunately it took me two days to rectify the mess the’d made of my BGLs. Once sorted, I then had a stoush with the nutritionists, and then had a nurse telling me that I should have supper(!) so I wouldn’t have another hypo. She was non-plussed when I pointed out that I would have to bolus for that supper, and it would’t solve anything. I just adjusted the pump, and all was well. Medicos and HCPs in general need to have training in listening to people who have lived with this, or any, chronic disease.

    1. Thanks Jane. Perhaps another essential skill is keeping your cool in the face of medical ignorance :)!

      Supper, OMG that’s a blast from the past, s’pose they suggested a glass of milk and a SAO biscuit.

  2. You guys crack me up! Spot on as usual Melinda. Jane, you”re spot on about the hospital experience too. Nothing to add really expect that education for HCPs is missing. I would like to see more education about patient choices rather than a top-down approach as Melinda has already mentioned. The doctor/educator’s role is to respectfully outline the options with the patient. There are new things happening all the time that long-timers are uninformed about but, just because it’s new, doesn’t mean it’s the best choice. I think PWD who have had it for years have worked out what works best for them and this needs to be respected.

    1. Thanks anon. Yes, I think that idea of outlining options is so obvious and yet it’s just not done. It’s kinda crazy, they now call that “patient-centred” care and yet it really is just “informed consent”-you know that thing that’s supposed to have been happening forever.

    2. Re informed consent. I have noticed with my doctor and with doctors in hospital decisions are made without informing me what is happening and why. For example I went to my doctor to get a request for a cholesterol blood test as required by my heart specialist. My doctor ordered a battery of tests that required 3 vials of blood samples. My veins aren’t good and it was a big drama. He did not tell me he was doing so. Similar things happen in hospitals too. We are in charge of our own health care 24/7 and to be treated like an ignoramus is so abhorrent to me.

  3. Mel, and all who have replied, you’re all spot on! At any info event I attend in the last years I’ve put in feedback that I would love a future topic to be ” diabetes over the life span”. Some of it may never happen to us but it would good to have some info before things happen so whatever it is isn’t such a shock. Maybe incorporated with normal ageing stuff. I’ve had Tyoe 1 50 years and have just turned 60, I don’t feel very old but when one of the doctors in ED recently called me “Sweety” any wonder my blood pressure went up!!! Oops sorry about the last many rant.

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