#135shoes - 108 unnecessary amputations a week

Diabetes UK have been working on their 'Putting Feet First' campaign for some time now, but today is the day they are really trying to hit hard with it. They are staging an event in Westminster featuring 135 shoes scattered across a lawn, each bearing a note of the impact that amputation, or living with the threat of amputation can bring. The statistic is horrifying, but even more gut-wrenching is the byline. Eighty percent of these amputations could have been prevented. Eighty percent. It strikes a particular chord with me as I am aware that Bristol, where I live, has a particularly high rate of amputations compared to the national average.

Having lived with diabetes for over 25 years I have spent quite a lot of time trying not to think about complications, but if you are lucky enough to still have all ten toes attached, just think for a moment about the impact on your every day life of losing one or both of your feet. Of the additional challenges that would come with a million every day moments. Stairs, nipping to the shops, running for the bus, running for pleasure, sports, shoes, paddling in the ocean, walking the dog... And for 108 of those 135 people, this devastating event might have been prevented.

Many of the people who live very real and very human lives behind this cold, hard statistic will be living with Type 2 Diabetes. They will be used to having people assume that this is all their own fault. That they should be ashamed of themselves. That they have only themselves to blame. Because type 2 is a 'lifestyle' disease, right? "Too many cakes and not enough exercise you poor, waddling excuse for a human being". Blah blah blah. So on top of the physical trauma and day to day difficulties faced, they will be heaped upon with guilt for the enormous cost of their treatment to the tax payer. What remains of their self esteem crushed beneath the weight of media, public and family opinion and in some cases even a medical profession that seems to overtly judge them as failures.

But is it really as simple as that? And even if you think it is, what fruit does that mindset bear?

Personally I don't believe that it is. There is a lot in this article, You did NOT eat your way to type 2 diabetes, that makes a lot of sense to me. Now that's not to say that I dismiss the concept of personal responsibility entirely. Of course not. If some people had made changes perhaps they could have dodged their diabetes diagnosis. But it just seems to me that many (most?) people who live with Type 2 diabetes were doing pretty much what everyone else was doing, it was just that their metabolisms weren't up to dealing with the semi-toxic combination of a modern Western diet and a massively wealthy and profit-hungry food industry.

But getting a diagnosis of diabetes (of either type!) surely should not inevitably lead to 135 people each week undergoing expensive life-altering surgery. Our understanding of managing long term conditions, like diabetes, seems to be improving year on year, and yet many of the outcome measures seem to be  getting steadily worse.

How can we change the balance so that there are only 81 shoes on the lawn?

Here are a few thoughts from my unqualified, unmedical viewpoint:

1. Get your feet checked every year
   This is for us lot with diabetes really. Foot checks are supposed to be part of your annual review every year. Go to your appointment and make sure you get your pulses and sensitivity checked. If there are any problems you want them spotted early.
   
2. Stop telling people that diabetes is inevitably progressive
   This is less a factor for us living with Type 1, but many with Type 2 are set up to fail from the outset - if something is inevitable, why bother putting in effort to prevent it? Effective managment of diabetes is a relentless slog, we need to be encouraged that the effort is worth it. Don't blame people if they need more or different medication as time goes on, but never make them feel like it is not worth trying, that there is nothing they can do. Focus more on the positive benefits of effective management in the short and long term.
3. Stop telling people that type 2 is 'mild'
   Incredibly this still seems to be suggested to some people. That type 2 is not really very serious and doesn't need much attention paid to it. I much prefer the quote about diabetes and tigers: "Living with diabetes is like living with a tiger. If you feed it, groom it, never turn your back on it; you can live with a tiger. If you neglect it; it'll pounce on you and rip you to shreds."
4. Start telling people to watch their carbs
   Diabetes is a long term condition. People were diagnosed with it years ago, and told the information that was felt appropriate then. Some years ago people diagnosed with type 2 diabetes often significantly increased their 'starchy carb' intake on the advice of their healthcare professionals. Almost all sources now seem to acknowledge that moderating carbohydrate intake - and not just sugar, ALL carbohydrate - is beneficial for people with diabetes. Now I'm not going to open the low-carb can of worms here, because what I am talking about is really more to do with better BG outcomes than any arbitrary label you might place on a number of grams of carb a day that you might feel works for you. Which leads me nicely on to...
5. Allow motivated patients to check their Blood Glucose
   The vast majority of people living with diabetes in the UK have type 2. And the vast majority of them are told, time and time again, that they do not need to test their blood glucose levels. That the 6-monthly HbA1c test is enough. I could write a long and ranty post about how we seem to have got ourselves into this mess (including the Farmer et al study that is still used as an official reason why SMBG - self monitoring of blood glucose - for type 2 is not recommended) but I would rather talk about the motivated people I see on diabetes forums. They fund their own strips because their surgery won't. They test before and an hour or two after eating something (whenever they generally get their highest reading). They look at the results and the quantities and types of foods eaten and make adjustments. They use the very pre- and post-meal target values that are in the same NICE guideline that denys them access to SMBG. And as a result? They are able to actively tailor their diet to suit their own diabetes, many are able to reduce or emilinate medication and their HbA1cs usually fall well outside of the 'danger zone'. And if they can do it... so can hundreds and thousands more if given the right testing framework, simple guidance and 6 month's or a year's worth of strips for that intensive early testing.

Well done to Diabetes UK for highlighting this important topic. I hope some action can be taken to reduce the enormous, unnecessary, financial and personal cost behind these statistics.

64 Days with the Medtronic 640G: Ep 2 The first 28 days' results

I wasn't expecting to be posting this blog today (well it seems like it'll be tomorrow by the time it has uploaded, but it's still today as I'm typing this). I had a vague plan that I'd do an introductory blog, and then move on to explain what SmartGuard was and how it worked. But today marks 4 weeks since I have been living with the MiniMed 640G and having looked at the results so far to say I am impressed is an understatement.

Ever since diagnosis, if I'm honest, I have preferred to run on the low side rather than on the high side. Lows were quick to sort out and usually involved eating something sweet and tasty, while highs took much longer to come down and, while they did not make me feel particularly grim like they do for many people, they also carried with them the spectre of all those diabetes nasties waiting in the wings. Blindness, kidney failure and amputation vs fruit pastilles seemed an easy choice to make.

Of course running on the low side and 'preferring' hypos is not a brilliant plan. My hypo awareness began to take rather a dent and I spent many years with significant hypo unawareness and the severe hypos that go with it, especially overnight. Looking back I am ashamed that I did not realise the pressure and stress that this placed on my whole family and especially Jane.

Pretty much since we began writing this blog I began to try to reduce my incidence of hypoglycaemia and regain my warning signs, and generally wrestle my diabetes into behaving itself a little better. I have put quite a bit of work in and learned a lot. Thankfully I have not had an episode of Severe Hypoglycaemia for something like 3 or 4 years now - long enough ago that I can't remember anyway. But for all the success there have remained a stubborn few dips under 4 (which may or may not be hypos depending on your definition) that I have been unable to tame.

This video blog examines what effect SmartGuard has had to my results in these first 4 weeks.


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64 Days with the Medtronic 640G: Ep 1 Introduction. Comparing the MM640G with Paradigm Veo

Following on from my early preview of the MiniMed 640G insulin pump, I have been invited by the fine folks at Medtronic to spend 64 days with their new box of tricks, and to share my experiences through the slightly scary and unfamiliar medium of video blogging.

It's what all the cool kids are up to (apparently).

For this first installment I have tried to do a little compare and contrast between the Medtronic Veo and the new MiniMed 640G. Just a few things that have struck me during my first couple of weeks of use really. I'm not yet going to mention Smartguard and compare that feature to the Veo's Low Glucose Suspend, partly because I think that Smartguard deserves a vlog all of its own, but mostly because I have never used sensors with my Veo so have nothing to usefully compare.

I am hoping to post a video every week or so over the 64 day period, but I have quickly come to realise that this video blogging lark is nothing like as easy as everyone makes it look, so you may have to bear with me on timings. I'll announce any new episodes here and on Twitter, naturally, but if you are really keen I suppose you could always subscribe to what is now laughably described as my YouTube Channel.

In the meantime you can find some more, rather more coherent information on the MiniMed 640G here.

And please do check out the video blogs of other MM640G users too.

Leave any comments or questions here or on YouTube and I'll do my best to answer them.


Watch this video on YouTube.

Release your inner diabetes Hobbit - Guest post for Diabetes UK

My diabetes, yesterday.

Last weekend we finally got around to watching the last part of Peter Jackson's mammoth 'Hobbit' trilogy "The Hobbit: Battle, battle and a bit more battle" on one of those newfangled instant video services (pauses to wistfully remember trawling the aisles of tiny, ramshackle video rental shops all those decades ago). During one of the epic-wide-shot-sweeps across the thundering conflict there emerge, through dust and fracturing hillsides, several enormous, lumbering cave trolls - staggering about, squashing people and generally getting in the way.

They reminded me more than a little of my diabetes.

Except that my diabetes doesn't often wear a little wooden backpack-style platform of Orcs throwing rocks. Although some days...

I think it was the thick-headed stagger of them that made me draw the comparison. The turgid movement. The stupidity and utter disregard for anyone or anything around them. Yup, my diabetes can be all of those things. Slow, stubborn and very hard to work around.

The heroes of the film, by contrast, are tiny, fleet of foot and scamper around very nimbly. Dancing and chasing in and out, between legs and around corners, while the grunting Diabetes Troll laboriously lifts its impossibly-heavy hammer for another ill-aimed swipe.

But there is obvious peril here. Running rings around the hapless troll is all very well, but unless you keep your wits about you, and ideally keep your distance from the 'complications' hammer sooner or later you run the risk of getting squashed.

Mercifully, diabetes complications are pretty slow moving for the most part. And an occasional out-of-range reading here or there does not necessarily mean that our kidneys pack up immediately or our eyes are instantly fried [Good job too looking at my BG results this week!]. But there is a danger in that. It is all too easy to become a little complacent. Doing something now that (you hope) will reduce the chances of *something* not happening 5, 10 or 20 years from now is not a brilliant action-reward feedback loop. What someone once described as, "We work hard so that nothing happens... We hope that all of that "something" we do leads to nothing - Nothing is a pretty lousy reward".

All that effort and nothing to show for it. Are we doing enough? Do we need to do more? And we can't rely on our feelings to measure these things. There are no pain-measuring nerve endings in many of the places that our Diabetes Troll might be taking a swing at. And the swing itself might be so slow as to be almost unnoticeable until it's right there upon you.

And that is why the 15 Healthcare Essentials recommended by Diabetes UK are SO important. The first 9 or 10 represent really important annual checks which allow you to keep an eye on your Diabetes Troll. And if you discover that you are straying a little too close for comfort, having these checks done every year allows you to take action early to reduce your risk of getting squished. Between 10 and 15 there are really important parts of your care package which will allow you to improve your hammer-dodging skills, brush up on your swordplay and make sure your mind, as well as your body are ready for the fight.

15 Healthcare Essentials Checklist

1. Get your HbA1c measured at least once a year
2. Have your blood pressure measured and recorded at least once a year
3. Have your blood fats (such as cholesterol) measured every year
4. Have your eyes screened for signs of retinopathy every year
5. Have your feet checked every year
6. Have your kidney function monitored annually, including having your urine tested for protein
7. Have your weight checked
8. Get support if you are a smoker
9. Receive care planning to meet your individual needs
10. Attend an education course to help you understand and manage your diabetes
11. Receive care from a specialist paediatric team if you are a child or young person
12. Receive high quality care if admitted to hospital
13. Get information and specialist care if you are planning to have a baby
14. See specialist diabetes healthcare professionals to help you manage your diabetes
15. Get emotional and psychological support

Around 80% of the budget spent on treating diabetes in the UK goes on sorting out complications. Just think about that for a moment. 80p out of every pound. All the cost of medications, test strips and fancy diabetes gadgetry are utterly Hobbit-like when set against the monstrous scale of the cost of helping those for whom things have not worked out so well.

The vast majority (around 90%) of people living with either type 1 or type 2 diabetes have never been offered or have never attended a structured education course which could give them the skills to live better with diabetes every day.

Way less than half of the people living with Type 1 in the UK are getting the checks that they should every year. The actual figure, according to the National Diabetes Audit is just over 40%.

People are not finding out early enough that their eyes, kidneys or nerves are starting to show a little wear and tear. It is never too late to make improvements to your own diabetes management, or get the right treatment and support. Many, many people have used information from their 15 Essential Healthcare Checks to dodge the hammer-blow and nimbly dart out of reach of the troll's swing. Early warnings are just that. Improve your diabetes management and in many cases those early signs can be stopped in their tracks - sometimes they can disappear altogether.

If you live with diabetes, or know someone who does - make sure you read that list and make those appointments. Being told, 'It's all looking fine' does not make these visits a complete waste of time. It's an important annual opportunity to make sure you are staying one step ahead of the trolls.

See also: 15 checks, diabetes audits and prawns

Gimme 5 - a new hypo strategy

It is. Is it? Isn't it?

Here is a conversation I have had at pretty much every annual review I have ever had for my diabetes:

HCP: How many hypos are you having?
Me: Well... erm... that kinda depends on what you mean
HCP: What?
Me: On how you define 'hypo'. What you mean by it. What number or experience you use.
HCP: Erm... well... I... er...

You might think that it is a fairly simple question. Anything below 4.0mmol/L right? "Four is the floor" and all that.

Except that in the US it would be below 70mg/dl (3.9mmol/L) not below 72mg/dl (4.0mmol/L) - so suddenly there are a whole bunch of results that don't 'count' if you live over the pond just to make the US version a round number.

The matter is even more complicated by inherent meter inaccuracy. I have to say I trust my current Contour Next USB more than any other I have ever owned. Previously if I wasn't sure of a result I would immediately retest and could get a new result perhaps a mmol/L or two different in either direction. With my Contour Next USB, double checked results are more often than not *exactly* the same, or at most within a few decimal places. But this aside, ALL blood glucose meters are only legally required to work to within +/- 20% of a lab value. As I have pointed out before this can mean that your 4.0 (72) reads anywhere between 3.2 (58) and 4.8 (86). So which of those sub-4s would you count if some of them might be over 4 with a different strip or from a different finger? I can't spend my whole life (and all my test strips) triple-checking everything and taking the mean value...

But even if we set aside the imperfections in the data feed and assume that all the numbers are the actual numbers, it still isn't that simple. Particularly if, like me, you have ever experienced a degree of hypoglycaemia unawareness. Because you, dear non-diabetic reader, could be quite happily pottering along right now with a plamsa glucose concentration of 3.8mmol/L and no warning signs, and no one would care a hoot. For me and rest of the pancreatically-challenged horde though... things are different. If we don't get clanging warning signs at every 3.9 there is a breed of healthcare professional that will believe you are a danger to yourself, society at large and will be lucky to make it down the stairs without collapsing into a coma.

Don't get me wrong. I do not underestimate the severity of Impaired Awareness of Hypoglycaemia. Far from it. I have lived with it, and through it, and (particularly if associated with Severe Hypoglycaemia as it so often is) it is miserable for you, your family and everyone you are close to.

But if people without diabetes can be 3.8 and not hypo... then... well... er... Are we pancreas impersonators supposed to perform better than a fully-functioning non-D?!

Added to this - some guidance describes treating levels below 4.0mmol/L to avoid hypoglycaemia. From this standpoint 3.x-3.9mmol/L could be seen as offering a sort of 'buffer zone', a tiny whisker of breathing room before things might start getting messy. But 3.what?

This study suggests that most non-diabetic people will begin to experience some early warning signs in the region of 3.6-3.9mmol/L

While this study puts the level at which the brain begins to malfunction as 3.0mmol/L. And this, after all, is what we are actually trying to avoid at the end of the day.

But you don't have to have lived with diabetes for very long before you realise that the more 3.7's you have, the harder they are to spot. And the more likely you are to start getting 3.2s. And so on... and so on...


Plus ca change
And so it goes... I have some sub-4s, I try to have fewer. Some months it works. Other months it doesn't. Sometimes people are advised to 'run a bit higher' for a while (though there is little evidence that this relaxing of targets actually works to be honest). And I'm always caught by not really knowing how important a handful of readings between 3.5 and 4.0mmol/L are in the absence of Severe Hypoglycaemia and with relatively reliable warning signs that usually kick-in around 3.0-3.5mmol/L. And yet some clinic appointments make me feel like an abject failure for missing a 3.8 here or there. And the lower your HbA1c, the more twitchy your clinic tends to be about how many 'hypos' you are having - the very people who will be asked about your fitness to drive, for example. It's a quandary.


New strategy... Gimme 5
So as of this month, I have decided to try something new. I have been treating 5.0 as if it were 4.0. Any reading below 5.0 I have been treating as if hypo with fast-acting carbs (I have never been a follow-up carb person). And anything below 5.5 I have been treating more moderately with a smaller amount of fast carbs and/or a short sharp TBR - say 30-60 minutes dropped down to 10%.

Results so far are fairly encouraging. As an approach it certainly hasn't resulted in the general hike in BG averages that I have seen previously when trying to get rid of a few more of those pesky dips below 4. Hard to be sure and I'd have to run the system for a few more months but my best guess is that I might have lost perhaps 25-40% of sub-4 readings so far.

What do you think? Am I the only one who drives themselves nuts over this? How do you go about hypo-busting?