I attended the consumer outreach day of the ADS-ADEA 2014 scientific conference last week and it was during the session on hypos that I realised that the intersection of scientific “evidence”, clinical expertise and the lived experience of diabetes is a total train wreck.
ADS-ADEA 2014 are to be commended for dipping their toes into the murky waters of consumer involvement in scientific sessions, bans on pharmaceutical companies (who are the major source of sponsorship for such conferences) and affordable and meaningful involvement of people with diabetes in conferences that talk about rather than with them. Most countries fail to accommodate consumers at all. There is much to be done to integrate consumers into these conferences and we’re not there yet, but credit where it is due, the 2014 ADS-ADEA was a really encouraging start.
So back to the train wreck….
The first part of the morning session on hypos was a presentation on the effects of hypos on the brain. There was good data from studies to show that severe hypos are neurotoxic and particularly so to the developing brain. The most injurious thing to the brain of somebody under 6 is severe hypos combined with hyperglyceamia. Hmmmm, this was extremely depressing listening for me who was diagnosed at the age of 16 months, but the science was clear. During question time, it was asked how you would talk about this with your patients and the response was “With great caution, these effects (on the brains of those who’ve suffered severe hypos and hypers) aren’t obvious in everyday life/interactions.” It’s too late for me, my brain might have been injured but I guess I’ve been able to hide it pretty well. I did, however, feel for the parents in the room who are faced with the daily battle of achieving optimal a1cs and avoiding hypos. I honestly believe I would make the decision to run my diabetic child’s sugars a little higher in order to avoid hypoglyceamia after listening to that evidence-based presentation. Continue reading →
I don’t need YOU to empower ME. thanks all the same
Words like “compliance” and “adherence” are now seen to reflect the authoritarian health structures of yesteryear and have been abandoned in favour of “patient empowerment” and motivational interviewing.
At least with compliance you knew where you stood-the doctor expects you to do as he says. The notion of “empowerment” is a slippery little sucker* but in a twist worthy of George Orwell’s 1984, the term is often used to mean “empowered to make healthy choices” it’s a sort of doublespeak in which patients are, it seems, being empowered to become compliant with instructions aka advice provided by health professionals. Continue reading →
I’ve just seen reporting of a study of people with type 1 diabetes that sums up everything that’s wrong about medicine’s attitudes and views of type 1 diabetes.
Dr Jenise C. Wong M.D. PhD, from the University of Californa surveyed people with type 1 diabetes about whether they downloaded data from their meters, pumps and/or CGMs. In what comes as no surprise to me, “only” 30% download their data and “only” 12% regularly review the data.
“People with type 1 diabetes really are not reviewing their device data at home. … The reasons why they don’t seem to be doing this is that they lack guidance and they lack motivation and it also may be because the data may be really hard to get,”
Ok, so roughly translated that is saying we’re too stupid and/or too lazy to download and review our diabetes data. Continue reading →
One of the most irritating things about type 1 diabetes is that it sentences you to a lifetime of stupid questions. It’s not the uninformed questions from colleagues and acquaintances that bother me, in fact these are usually asked with genuine interest and concern and I’m happy to advocate for diabetes by sharing my diabetes experiences and knowledge. What bugs me are meaningless and useless questions asked by health care professionals who aren’t asked for input on your diabetes. They’re usually asked by nurses or assistants at ophthalmologists or GPs and non-diabetes specialists and they go something like this”
“How are your sugars?”
“What was your highest sugar in the last month? What was your lowest?”
Diabetes Dad is launching a campaign to improve the diagnosis of type 1 diabetes in primary care in the US. This is much needed, not only in the US, but also Australia. Despite being one of the most common diseases of childhood(Australian Institute of Health and Welfare 2009), too often children are diagnosed with flu and sent home with an aspirin, only to re-present in critical condition a few weeks or days later.
My family’s story is of how, despite, several WEEKS of visiting doctors, a diagnosis of teething and finally an admission to hospital where they gave me milkshakes and didn’t bother to test my urine or blood for sugar (no thanks Hornsby Hospital) I nearly died at 16 months of age from DKA. I was projectile vomiting, turning blue (I think I was the inspiration for that Exorcist movie) and having difficulty breathing when Mum demanded action and she and Dad were advised by doctors to drive me almost 30 kilometres from Hornsby Hospital to the Kids hospital in Camperdown (and yes, it was peak hour on a Friday night) Continue reading →