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 readingTweet
Sometimes Twitter does your head in, and I’m not talking about the trolls.
Possibly seeing a marketing opportunity, @DiabetesAU (NOT it must be noted Diabetes Australia but the twitter handle of Natalie Wischer, who is apparently the CEO of the National Association of Diabetes Centres NADC) was quick to tweet her whole-hearted endorsement-presumably on behalf of NADC, as indicated by the first person plural.
We agree! We will discuss this & more at the Australasian Diabetes Advancements and Technologies Summit (ADATS)
Yippee!! I thought, how great there’s going to be a whole conference on diabetes technology in Australia AND they are totally into patient choice!
I rush off to the link so thoughtfully provided at the end of the tweet to book tickets, only to find this conference is patients excluded. You need a health care provider number to register. So no patient choice here BUT never fear patient choice is going to be discussed by a bunch of doctors and DNEs. My irony meter is going off the scale.
Don’t despair though fellow-patients, despite the ban on our attendance, I’m assured that the patient voice will be heard. One person with diabetes and a health care professional are going to present on this “very important topic”. Ah right, I check the program, a person with diabetes is going to get 5 MINUTES in the program to present the consumer perspective and a psychologist (who doesn’t have diabetes) is going to get 20 MINUTES to speak about psychological impacts.
Whilst I guess 5 minutes is better than no minutes for a consumer voice to be heard-I’ve got to say I find the 5 minute time slot rather insulting, especially as the speaker, @RenzaS is an experienced and professional presenter with many years experience at DAVic and in advocacy, it’s not like she can’t handle a longer time slot. 5 minutes is the allocation for “hearing the patient voice”. Hmmmm.
That aside, however, neither a 5 minute consumer slot or a psychologist presenting professional insights is patient inclusion, nor does it have anything to do with supporting patient choice in technology. Inclusion and patient choice is about allowing patients to access information to enable informed participation in healthcare.
I understand that professional organisations run conferences for their members and sometimes those organisations exclude non-members-it’s their conference after all. I also understand prohibitions on “consumers” attending conferences where drug companies advertise their products.*
This is fine, just don’t boast about your support for patient choice when your implementation of that support is to discuss it at a conference of health care professionals from which patients are deliberately excluded. This just serves to highlight how very keen many professionals are to exclude “patients” from the dialogue of healthcare.
Without access to information, the patient will never be able to take control of their health decisions, I wonder if that’s the real reason we’re excluded, as the old saying goes, knowledge is power.
*@DiabetesAU tweeted to me that patients could not attend because of pharma sponsorship of the event. I have perused the program http://nadc.net.au/wp-content/uploads/2017/03/ADATS-Program-26.6.17-zip.pdf as at 7pm 3rd July 2017 and I can find no disclosure of links to pharmaceutical or other commercial enterprises at all. I would have thought transparency on commercial sponsorship would have been desirable to those attending, it is to me and I’m not even subject to the rules on pharma marketing.Tweet
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.Tweet
Despite a lot of words to the contrary there is no one-size fits all solution for diabetes management. With choices about technology, different versions of similar technology, different insulins and different diets it is actually quite a complex business to decide what you’re going to do. Sadly, I think healthcare doesn’t really understand the notion of patient choice-they do in theory but practically they can’t stop themselves from knowing what’s best. (See for example this, that refers to patient preferences not to use CGM or a pump as “barriers” and assumes tech is universally beneficial!)
So this is the sort of stuff I consider before adopting a new piece of tech, I’d be interested in hearing if you have other ideas or experiences in deciding upon tech. Continue readingTweet
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 readingTweet
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.Tweet
I’ve just spent the last 24 hours with people who also happen to have diabetes, specifically people who blog and/or are active in the diabetes social media space. We met because Abbott invited us to trial their Freestyle Libre, which has just been approved for use in Australia. Yes this was a marketing event, no I have not been paid to write about it. My travel and accommodation expenses were covered by Abbott and I was given a reader and 2 sensors but I am under no obligation to blog or otherwise write about or comment on their product.
I offer some information and my very limited experience of it in hopes they may be of interest to readers interested in new technology. Continue readingTweet
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 readingTweet