Category Archives: Advocacy

The A1c, More Than Just a Number

Melinda Seed writes for Twice Diabetes

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.

The anxiety is real for many! (Thanks to Type 1 Diabetes Memes)

Continue reading

Finding Your Diabetes Sweet Spot

Melinda Seed writes for Twice Diabetes
Melinda Seed writes for Twice Diabetes

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.

At this point I go one of two ways. Continue reading

Sitting on One Butt Cheek for Diabetes

 

Melinda Seed writes for Twice Diabetes
Melinda Seed writes for Twice Diabetes

I’VE HAD ENOUGH.

I’m officially burnt out, not from my 4.5 decades of diabetes but from the  relentlessly pathetic public awareness campaigns.  I give up*, you just have to laugh otherwise you’d cry or lapse into depression. The dust has just settled on National Diabetes Week in Australia and each year just seems to get worse.

Who  could possibly think that DNSW’s Standing on One Leg event was a responsible, constructive way of doing ANYTHING for diabetes let alone being an appropriate way of tackling preventable amputations?  Seriously, do they put some PR interns with no knowledge of healthy psychology, fear appeals or diabetes in a room and tell them to come up with an idea in 10 minutes and then run with the most ridiculous one? Certainly seems so. Continue reading

I Want a Lawyer for my Diabetes

Melinda Seed writes for Twice Diabetes
Melinda Seed writes for Twice Diabetes

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

Fear Tactics & Psychological Harm

Melinda Seed writes for Twice Diabetes
Melinda Seed writes for Twice Diabetes

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 Screen Shot 2016-05-17 at 8.50.36 PMare 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.

The Price of Insulin These Days…..

 

Melinda Seed writes for Twice Diabetes
Melinda Seed writes for Twice Diabetes

Most of the time I take it for granted that a magic potion keeps me alive.

Insulin should be blue

If you do stop to think about it it’s scary. When you hear about the price of any lifesaving drug going from $13.50 to $750 overnight, it makes you sit up and take notice.  Continue reading

Insulin for All or Saving Lives

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No matter what other images, articles and comments you might see in the media about “diabetes management” for the 10% of “diabetics” who have type 1, the ONLY thing that keeps us alive is insulin. No diet, no exercise, no tablets will stave off the death of a type 1 denied insulin.  Those of us in affluent countries are blessed to have access to affordable insulin, but just imagine being in a place where this wasn’t possible. In many parts of the world insulin costs many times the annual wage of an average person and/or supplies of insulin can’t be guaranteed.  The fate for such people is as described by a 2nd Century physician, known as Aretaeus, the Cappadocian

Diabetes is a wonderful affection*, not very frequent among people, … Life is short, disgusting and painful, thirst unquenchable, death inevitable.

It’s a sobering thought isn’t it?

Check out http://insulin4all.tumblr.com , http://twicediabetes.com/misunderstanding-death-sentence/

*Affection has an archaic meaning of “disease or condition”

The Dangers of NOT Using Dr Google

Melinda Seed writes for Twice Diabetes
Melinda Seed writes for Twice Diabetes

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!

Endowitch

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