I’ll take the App over the Medical “expert” thanks.

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

I am really sick of all the “expert” advice I’m being given about managing my diabetes.  Seems everybody’s an expert in diabetes these days, advice is being shot at us from all different directions. Diabetes organisations, newspapers, magazines, pharmaceutical companies, governments, diet companies, companies selling cinnamon, A2 milk and goodness knows what else.  Enough Already!!!

Diabetes is complex and it amazes me that so many people with so little knowledge claim such expertise. I am mildly amused when the tealady tells me I can get off insulin by using Fenugreek but I get my cranky pants on when supposed “experts”, with some medical knowledge but nothing diabetes-specific hand out gratuitous advice that is ill-informed and assumes that people with diabetes are stupid and irresponsible.

I recently came across an example of this in the Sydney Morning Herald, in an article entitled “Health Apps you Should Avoid” and I quote

“There shouldn’t be an app for that….

4. Insulin dose calculators

Both Dr Kvedar and Dr Misra said diabetic smartphone users should be especially wary of apps that record their daily food intake and, in turn, calculate an appropriate insulin dose. Food intake is one factor, but “certainly not the only thing” to consider when calculating an insulin dose. When it comes to medication dosage, it’s best to ask your doctor.”

Hmmm! I smell an extremely outdated idea of diabetes management that assumes people are told an amount of insulin to take each day and that to vary that set amount is to be non-complaint with dosage instructions.  Dr Kvedar and Dr Misra would no doubt be surprised to hear that endocrinologists teach us to use a variety of tools to calculate our OWN insulin doses and that the vast majority of “insulin dose calculators” are just an aid to doing arithmetic.  Insulin pumps which are fully approved by the TGA and scrupulously monitored have had this capacity for years.

Dose calculators based on food intake are useful in helping you do what tight diabetes control requires. Type 1 diabetics “bolus” an amount of insulin each time they eat carbohydrate, most of us do this based on an estimate of the amount of carbohydrate in our meal and the pre-existing knowledge of our ratio of insulin to carb ratio. So an app to calculate the bolus for various amounts of food sounds like a good idea, just tells you the amount of carb in a particular food and then applies your ratio to that to save you some mental gymnastics.  It’s a more precise way of calculating a dose and you know what? There’s medical EVIDENCE (yes not just somebody’s opinion) to support the fact that bolus calculators are medically beneficial!  In a German Study, reported here it was found that significantly more of those using an automated bolus calculator had an improvement in their HBA1c as compared to a group using just mental arithmetic.

If this was just a one-off then it would be relatively minor but it’s not. This misinformed “expertise” is everywhere.  In hospitals everywhere people with diabetes are fighting against generalist doctors and nurses who think they know best and don’t mind telling you.  My T1 friend was told by her GP that she needed to work harder on her a1c of 6.7, it was too high. I was admonished like a naughty child by a nurse who told me my bsl of 5.4 was “marginal and I was NOT TO LET it get any lower” I thought I’d been bloody awesome (and so did my endo) to get a waking bsl of 5.4 mmol/l which is the normal non-diabetic range but it was marginal in the “expert” opinion of this nurse.

These are relatively minor but sometimes it’s life threatening.   A t1 acquaintance in ICU for meningococcal was put into DKA because everybody knows apparantly that you don’t need to take insulin if you’re not eating. She was extremely sick and begging for insulin and those who knew best didn’t consult an endocrinologist or do anything at all as her breathing became laboured etc as a result of the ketones, eventually with a bsl in the 30s and high ketones they administered a tiny dose of actrapid insulin-way too little and way too late. It was only as the result of intervention by her family that the situation was rectified. This was ICU in a major Melbourne Hospital and the “experts” were so woefully ignorant they didn’t even get a clue as their patient lapsed into DKA.  It’s a terrifying prospect to be too sick to manage your own diabetes and to be in the hands of experts.

Do I expect everybody to be an expert in diabetes?  No, not at all. What I hope is for people to stay silent on matters about which they know little and for hospital staff to consult the experts, that is the person with diabetes and their endocrinologist about diabetes NOT to assume that they know better about diabetes management.

Anyway, now that the rant is over, I’m really interested in hearing the expert opinions of those of you with diabetes in what apps you find useful, be they diabetes specific or not. Please share in the comments section.

I have absolutely no interest, financial or otherwise in promoting diabetes apps. I don’t even use a health app of any sort , I haven’t seen one that looks useful enough YET.

 

UPDATE 24 November 2013

Coincidently, a week or 2 after I posted this blog, the British Medical Journal published an article on the problems diabetes patients encounter when they know more than generalist health practitioners. It’s a good read available for free here http://bmjopen.bmj.com/content/3/11/e003583?cpetoc

5 thoughts on “I’ll take the App over the Medical “expert” thanks.

  1. Very well said! The only expert on your t1 Diabetes is you, the second in the chain is your Specialist and if he’s a good one he too will admit that you know you better than he does! Can’t commend you enough for this article.

    1. Hi Lynne,

      Yep, good specialists know they should listen to the person with diabetes and don’t pretend they have all the answers. I never trust any kind of Dr/DNE/nurse whatever who make out they know everything.

  2. HCPs for my daughter had been great. However my daughter wants a pump (on HCPs recommendation), I want what makes my daughter feel like lifes a wee bit better! I had actual appointments for pump clinic- but the school has raised “serious concerns” that it’s not suitable (with HCPs not with me)! I expected our HCPs to tell them not to be silly on many of these points (DKA from pump malfunction was one) but HCPs have said no pump until I see a host of other HCPs! Needless to say I’m looking for new HCPs and new School!

    1. Oh dear, I’m sorry to hear that Alicia. I would have thought that what your daughter uses to manage her diabetes is between her, you and her health care professionals. I am shocked that the school would be involved at all, is it a residential or special needs school where the duty of care goes beyond normal teaching-that’s the only situation in which I could imagine any justification for their involvement. I am stunned that the school and your daughter’s HCPs are liaising directly-seems problematic to me. All the very best for finding HCPs and schooling that is appropriate.

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