Language matters is not about being polite or swapping one word for another that conveys the same concept.
The reason why people with diabetes get upset and angry about words is that they betray flawed assumptions, presumptions and inaccuracies NOT because they’ve hurt out feelings. We may get upset about rudeness, incivility and being patronised too but that’s a different issue and one that many of us can solve by simply seeking health care providers with basic social skills.
Here’s a little story to illustrate what I mean.
Jack’s GP referred him to an endocrinologist for his diabetes. The referral said:
“… Jack is a type 2 diabetic of 1 years duration. He is not adhering to treatment recommendations, having failed to control blood sugars with oral meds and life style modification. His HBA1c has been steadily increasing over the last twelve months and as of d/m/y it was 12.2%. …”
The GP didn’t cause Jack emotional distress. The words were recorded in a communication between doctors, trying to convey ‘facts’. So there’s no problem here-right? I mean they’ve been polite even used the word ‘adherence’ instead of ‘compliance’-gheez some people are just so sensitive? The problem here is with lazy doctoring!Continue reading →
So the diet wars are hotting up again, I have a sense of deja vu… again.
I have had diabetes all my life and soon I will notch up 50 years. I’ve seen the advice chop and change over that time. Firstly it was eat loads of carbs at breakfast, morning tea, lunch, afternoon tea, dinner and supper. The distinction was made between starch and sugar. So it was thought that a piece of fruit would ‘burn up’ in your system more quickly than, say a slice of white bread. Then there was eat a balanced diet, then there was the Glycemic Index diet, then there was the carb counting and insulin dose ratio approach. Now we are learning that protein impacts upon blood sugar, as does eating fats but only if consumed with carbohydrate-so those after tight control are counting and blousing for protein and fats as well as carbs. Lately very low carbohydrate diets have been gaining attention and some very zealous followers.Continue reading →
UK endocrinologist and all round good guy, Partha Kar has been musing about patient involvement in funding allocations on his blog. I can’t help but respond, as Partha notes in his blog, he is thinking aloud and so am I, also playing devil’s advocate.
As a side note I have interacted with Dr Kar on twitter and he is genuinely interested in patient thoughts and is an advocate for patient involvement and the patient voice, so I trust he’ll take this as another step in the “debate”.
“Policy role can be much fun…it can also be very troubling…making judgement calls which may affect many is never easy- and it does always make me wonder- how much benefit would direct patient involvement help? I mean- lets get this right- absolutely a must, we all should do it…but how much would that help if- say- there came the question of allocating money to services?”
He goes on to suggest that patients will think in silos just like everyone else
“could patients help or even directly advise where to allocate that money?
Or would they be dictated by their own niche? …The argument that those who live with it- know more what to do with the money also falls a bit flat- when say a Type 1 diabetes person has to make a call over wider budget of diabetes- lest[sic] face it- their knowledge of living with Type 2 diabetes is the same as mine- nearly non-existent. Tricksy, isn’t it?”
Have you ever wondered how your diabetes would react if you were able to test it under “laboratory conditions”. Well I came pretty close last week-damn close to being the perfect diabetic-for 5 and a half hours anyway. Continue reading →
So it was Thursday morning, my pump reservoir was empty but when I went to refill it, I found the button I needed to press wasn’t working. I pressed harder, I gave it a little break and put it in a cool place. Alas no, my very out of warranty pump had finally let me down.
Time and again I find myself nodding at conferences or lectures when I hear a “patient’s” story of how the internet has or does make a huge difference to their quality of life/management of a medical condition or disease and its treatments. So it was again as I listened to e-patient Dave who told his story of engagement with the healthcare system following his diagnosis with stage 4 renal cancer.
Dave’s basic request “let patients help” seems unassuming enough and his definition of ’empowerment’ also seems like a modest aspiration. Continue reading →