Patient-centred care is a bit of a buzzword and a few sessions at #ADSADEA were devoted to it. There’s no definition of the term but it seems to refer to individual health practitioners listening to and responding to patient’s concerns during consultations. That’s all good and well but is that all there is to patient-centred care? It got me wondering about what the health care system would be like if it was run by people with diabetes instead of the government/doctor/bureacracy mash up we see today.
I recently came across a health/medical article that expressed concern about the level of variation in paediatric diabetes treatment between different paediatric endocrinologists. I thought the assumption that there was one best practice approach interesting especially in light of the statement, Continue reading →
So English endocrinologist Partha Kar asked on twitter if self-administration of insulin is always appropriate.
It got me thinking, when ISN’T it appropriate? It seems to me that when you’re diagnosed with diabetes you get some fairly rudimentary education and then you’re sent home to calculate dosage and administer a potentially lethal drug. Multiple times a day, day-in-day out we do this.
So where do health care professionals get off declaring us incompetent to do this and denying us our basic rights when we are inpatients in hospital? Continue reading →
So way back in April (wow time flies) I blogged about launching my low carb experiment. I was trying for ultra low carb because I’ve always been a bit all or nothing. I recognise for a lot of people it seems to work well, although I note that it seems to be men who really thrive on this regime. For me, despite perservering for some weeks, and despite the advice that this too will pass from low carb advocates I don’t like living with: Continue reading →
Heard lots of discouraging things about the danger of health information on the net? What about the dangers of NOT doing so?
The lovely “Endocrine Witch” posted this picture that had been doing the rounds on her Facebook feed. She has blogged about why she took on her colleagues to say she found the note offensive, thanks Iris, proof that many doctors are embracing 21st century technology!
I can imagine that it’s irritating when a patient comes to you convinced that they’ve got bubonic plague or smallpox, but you need to deal with it, it’s part of the job and whether it’s the internet or Dr Smith’s medical encyclopedia people always have and always will self-diagnose. Continue reading →
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 →