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 →
Kate’s post last week got me thinking about why I persevere with paying a lot of money to see an endo (see my reasons below) and I got a sense of deja vu. Way back in the day when we were younger and brasher I recall having similar conversations and I dug out an anecdote of a visit to the endo sent to me in the early 90s by a D friend that seemed to sum up how he and many of us felt-enjoy, I still get a good laugh out of this….
Today I trotted off to see my endo. I’ve been pumping for about 6 months and have not had the need to see anyone since than but the main reason I went was to get my fitness to drive form filled out.
I rock up and he asks me who I’ve been seeing since I started pumping and he’s not at all happy with my answer. I told him that I’ve met with several pumpers here in Adelaide and in Melbourne and have received all the information I’ve required. That as a result of that I’m feeling content and confident with my treatment. I was quite furious at his blatant disregard and lack of interest in a peer education and support strategy especially seeing that there exists no adequate medical support for pumps in SA.
“I would like you to go and see Ms Latoya Jackson, the new educator down at the Shithole Royal Hospital” he says in his smug endo manner. Continue reading →
There has been over a hundred years of research on diabetes and diet. From starvation diets to carbohydrate controlled, the portion or exchange system, low glyceamic index, glyceamic load, low carb. low fat, functional/flexible insulin therapy (DAFNE is one version of this I believe) and the normal healthy diet (whatever that is). It‘s hard not to be cynical about dietary advice when you’ve watched the advice change over 40 years. The latest position statement from the ADA is an admirable attempt to acknowledge the overwhelming lack of evidence on diabetes and diet and to recommend an individualised approach to dietary recommendations for people with diabetes.
“There is no standard meal plan or eating pattern that works universally for all people with diabetes. In order to be effective, nutrition therapy should be individualized for each patient/client based on his or her individual health goals, personal and cultural preferences, health literacy and numeracy, access to healthful choices, and readiness, willingness, and ability to change. Nutrition interventions should … provide the individual with diabetes practical tools for day-to-day food plan and behavior change that can be maintained over the long term.” ADA Position Statement, Nutrition Therapy Recommendations for the Management of Adults with Diabetes.
What struck me about this was the emphasis on the need for every person with diabetes to change. Rereading the statement, they seem to be saying we can’t tell you exactly what you should be doing, but nevertheless, what you’re doing now is wrong and needs to be changed. Sure, most people in the world could improve their diet whether they have diabetes or not but this isn’t what the ADA statement is about. They are making an assertion here that behaviour change is at the heart of “nutrition therapy” for diabetes and that “nutrition therapy is recommended for all people with type 1 and type 2 diabetes as an effective component of the overall treatment plan.” 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?”
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.
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 →