I should perhaps begin by saying that during the 20 odd years that I have had Type 1 diabetes I have had what I consider to be excellent care from pretty much every DSN, registrar, consultant, dietician, phlebotomist and GP I have come across. I am also aware, from reading accounts from people with diabetes elsewhere in the world, that the UK is a pretty darned good place to live if you happen to have a wonky pancreas. Now anyone who has spent any time treating people with diabetes will surely know them to be the most even-tempered, uncomplaining and obedient of patients(!) and I’ve been invited to reflect on my experiences from ‘the other side of the desk’.
Diabetes is a complex and contradictory condition to be diagnosed with. Long after the initial shock has worn off, patients are regularly assailed by conflicting emotional responses: Having diabetes doesn’t have to stop me from doing anything I want to... Diabetes stops me doing anything I want to... I can eat anything I want as long as I dose for it correctly... There is absolutely nothing that I can eat without causing complete chaos in my levels... I can do this! I just can’t do this any more! With diabetes it’s possible to experience any of these feelings in quick succession – or quite possibly several all at the same time.
What is worse for healthcare professionals, of course, is that diabetes is insanely personal. In the Diabetic Online Community (all those diabetes blogs and forums that you probably don’t read) there is a well-worn phrase that stubbornly refuses to die out from over-use – Your Diabetes May Vary.
One-size-fits-all this isn’t. Advice you might give to one patient that would work perfectly, might be a complete disaster to the next. Not only that but we diabetics, especially those of us with Type 1 tend to hang around for quite a while these days. If diabetes was my job, I’d be edging toward a carriage clock and time off for good behaviour by now.
This poses two main problems for HCPs I think. First is the assumption that we’ve been told things before. Second is the assumption that we don’t have a clue what we are doing. The first assumption could leave a patient floundering for years without a basic understanding various diabetes management approaches, dose adjustment or carb counting for example, simply because they were not in vogue when they were diagnosed. These patients then don’t get updated later as it is assumed by fresh faced perky young medics that they must know all this already. The second assumption could see a steel shutter slam down during a conversation if a suggestion is made that ‘If you are high you need to take a bit more insulin’ to a person who has been carefully tweaking their own doses for years.
In order to control my diabetes to my satisfaction I have to think about it more or less continually. It’s the first thing I think about when I wake up, and the last thing I attend to before sleep. There’s not a morsel of food that I’ve eaten in over 20 years that was not first considered in relation to its likely effect on my blood glucose levels. Any appreciable change in level of activity even just popping round the shops needs a bit of thought and a little forward planning. Even changes in the weather have to be watched. When I’m managing my diabetes well, it’s pretty much a full time occupation – the team I see get to think about it for about twenty minutes once or twice a year.
