I was one of the many pwd who was stunned back in 2015 when the UK’s National Institute for Clinical Excellence (NICE) issued its Guidelines for Type 1 Diabetes in Adults. These guidelines recommended a “target” HBA1c of less than 6.5%. The previous target was 7.5%
What I found stunning was that so few people managed to achieve an a1c of 7.5% or less and yet here they were setting an even lower target. For the record -the UK National Diabetes Audit showed that 29% of adults with type 1 recorded an a1c <7.5% (or 58mmol in the new measure) in 2015/16 AND fewer than one in fifteen (i.e. less than 10% of pwd) recorded an a1c of less than 6.5%.
It makes you wonder what exactly is the point of setting this number, what does it mean and is it sensible to set a target that appears cannot be achieved by 90% of people.
Is there such a thing as enough in diabetes management?
Your A1c is too high, you get it lower and your weight increases, you exercise more but the resultant highs and lows lead to an increased A1c. I know of people who’ve been told their a1c is too low, they’re at risk of hypo unawareness. You change your diet and you get more lows and for no known reason your lipid profile becomes crap and so on and so forth.
It’s Day 2 of Diabetes Blog week and we’ve been asked to talk about the other half of diabetes, the psychological side of diabetes. There’s already been some great posts from a personal perspective about this, for example, Georgie’s blog at Lazy Pancreas or Tim’s blog. For the full list click here.
I’d like to talk about the psychological harm some diabetes organisations are imposing on the very people they’re supposed to be helping-those with diabetes.
We’ve all seen those ads based on fear, the horror stories of complications and the frightening statistics telling us to avoid or “manage” diabetes. Frank blogged about this last week, Type 1 Writes.
So what’s the problem, shouldn’t people avoid diabetes and/or avoid complications? Well yes, and if doing either of those things was as simple as giving up smoking then the campaigns might be justifiable BUT it’s not that simple and that’s where the problems start. You see, if you get a terrifying message and yet you have little power to change the situation that gives rise to the terrifying consequences then you are likely to act in a negative way.
So if you have type 1 diabetes there’s nothing that can be done to reverse it and despite even the most diligent efforts and best technology it isn’t possible to entirely normalise blood sugars. In these circumstances the research supports that these fear-based messages cause people to engage in negative or health-defeating behavior. See for example, http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3678850/ , and Goldenberg J.L., Arndt J. The implications of death for health: A terror management health model for behavioral health promotion. Psychological Review. 2008;115(4):1032–1053.
So these fear messages have a negative effect on people with diabetes. It appears that diabetes organisations such as DiabetesNSW who have recently been unapologetically tweeting mortality statistics without any context or background either ignore this or they are quite happy to cause harm to the people they’re supposed to represent in hopes that they are having a positive impact on those who are at risk of diabetes.
Is this ethical? Are you happy to be a member of, or have your tax dollars support such behaviour? I always thought the first principle of intervening in health was “do no harm”. Guess they’ve abandoned that notion. Shame.
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’ve been thinking about diabetes education for what one diabetes educator calls “veterans”. It’s a topic that’s come up a few times on this blog and I’ve seen it raised recently in the twittersphere. What we’re talking about is not so much diabetes 101 but a PhD. in kicking diabetes butt. Continue reading →
Lately I’ve been dipping into a Berkely EdX course on the “Science of Happiness”. The course looks at studies and empirical evidence, as well as philosophical and religious beliefs about happiness. It’s a really interesting topic and judging by the thousands of people from all over the world who are participating, happiness remains a hot topic-just as it was for the Ancient philosophers 3,000 years ago.
I haven’t seen an analysis of the happiness related to health and particularly the effects of managing a condition like diabetes. Conincidently as I was looking at the Berkely course, I saw a lot of stuff on Social media about mental health week, so started to think about applying some of the science of the course to diabetes in particular. I haven’t finished the course yet but I really liked one of the introductory exercises, so thought I’d kick off thinking about happiness and D with this.
Three Good Things.
This is a quick, easy exercise that sounds a bit twee BUT I gave it a try and it really works. The idea is that at the end of every day you think of 3 things that made you happy (some say 3 things for which you’re grateful). I’ve been doing it for life in general and it’s amazing how many small things there are to be happy about and how you tend to take the good things for granted but spend a lot of time thinking about little things that annoy or upset you. I think the same applies to diabetes.
The problem with diabetes is there is no end to the calculations, the medical appointments, the dietary mandates, the quest for perfection and it is so easy to dwell on the tiny infractions rather than the multitude of positive things we do for our health. It might be as basic as giving yourself a shot-but hell congratulate yourself for doing something most of the population says they could never do. Instead of focusing on the result of a bsl check, rejoice in the fact that you’re engaging in such a health-promoting activity.
So for yesterday:
I did well to put in a new pump site well before the old one stopped working and made my bsls go high.
I made time to purchase new pump supplies & I’m grateful I live in Australia where this is not a cheap but it is a possible option.
I checked my bsl 5 times and acted upon the results.
For another day it might be: I went for a half-hour walk in the sunshine, which was lovely and boosted my mental and physical health.
I ate low carb, high fibre food all day-yay!
I didn’t have any hypos today
WOW, I’m a legend at self-care if I do say so myself!
Seriously, I recommend giving this a try, both for diabetes stuff and life in general-even if you do it once a week, you’ll notice a difference. Are there things you do to try to boost happiness? I’d love to hear your three good things for today (diabetes-related or not)-please post a comment and let’s get a happiness bonanza going.
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 →