Posted by on Tuesday, 17 July 2012

UK Food labelling consultation - have your say

Thanks to Dave (The Tangerine Diabetic) for his excellent writeup of Diabetes UK's Big Event (and also on Shoot Up or Put Up. Following his 'call to arms' I urge you to get involved with the public consultation on food labelling. The consultation ends on 6th August 2012. Have your say here right NOW!


Dear Sir or Madam

I have only today been made aware of the public consultation on the front of pack labelling as detailed here: www.dh.gov.uk/health/2012/05/food-labelling-consultation-launched/

Along with approximately 2.5 million other people in the UK I live with diabetes. I am one of the 250,000 or so people with 'type 1', the autoimmune version of the condition. As you may know food plays a pivotal role in the control of both type one and type 2 diabetes and in some senses knowledge about food eaten is as important as any medication taken - even injected insulin. I can't live without insulin, but I can't live without food either! Injected insulin needs to be balanced against the carbohydrate in food (that's all carbohydrate, not just sugar). Getting the 'sums' wrong in either direction can lead to unconsciousness/coma/death on one hand or blindness/kidney failure/amputation etc on the other. Food and diabetes represents a balancing act with both short term and long term perils waiting in the wings.

You have to to a LOT of back-of-pack squinting as a person with diabetes. I've been living with Type 1 diabetes for over 20 years and in all that time I can truthfully say that not a morsel of food has passed my lips without first being considered and evaluated in terms of its likely effect on my blood glucose level.

I would urge the committee to add more meaningful information to the front or packs by including CARBOHYDRATE rather than just 'sugar'. Even better would be a Glycaemic Index/Glycaemic Load indication (an average figure relating to how fast a food converts to glucose in the bloodstream). Both for people with diabetes and for those without *all* carbohydrate converts to glucose in the blood. What is not well known is that sugar, though it is energy dense, does not convert particularly quickly. Many foodstuffs sold as being 'healthy' and 'slow release energy' are in fact substantially faster to convert to glucose in the blood than sucrose (table sugar). Most 'healthy' breakfast cereals, for example are particularly poor in this regard. While this is of acute interest to those of us who are 'playing at being our own pancreas' it is also very important to everyone. Foods which convert rapidly to glucose cause a burst of insulin release and contribute to weight gain and cholesterol imbalance whether or not one has diabetes.

Adding 'Carbohydrate' to pack fronts, and indicating how disruptive a food is in blood glucose terms could be crucial in slowing and/or preventing many hundreds of thousands of people's slide into Type 2 diabetes, and would enormously help the blood glucose control of people already diagnosed.

80% of the NHS budget for diabetes is spent on treating preventable complications - helping people with diabetes make better food choices, and helping others avoid developing diabetes in the first place offers a significant opportunity to save millions and millions of pounds for the NHS at almost no cost.

Kind regards...

Posted by on Thursday, 12 July 2012

How's it hanging?

A few weeks back I had my first ever 'Pump Clinic'. I've been in for a few individual appointments, but this was the first (presumably annual) review of how things were going. I had a 'spare' HbA1c that I'd been given at my last 'Annual Review' and decided that this was a pretty good time to play my A1c joker.

I was fairly pleased to get a result of 49 (6.6%), though my meter averages suggested it might have been a little lower than that. I am beginning to think that the Contour Link's habit of reading slightly lower than my old Expert means that the conversion I used to use to estimate an HbA1c from meter averages is now a little off.

I also had a full lipid panel done (my GP review in March had mistakenly only ordered a total chol figure which is not much use in my book). I was happy to see that my total figure had fallen slightly to 4.7 and the splits remain reassuringly promising (for cholesterol nerds: Total chol 4.7, 1.9HDL/2.5LDL, Trigs 0.6). Fingers crossed my old ticker has a few more years in it yet.

I'm not sure if the folks at the pump clinic had just had a particularly challenging morning, but it was lovely to have my Pump DSN and the Consultant who heads the clinic saying such nice things. It may have helped that the basal tests I'd been asked to do in the weeks running up to the appointment (and had been in the process of doing anyway) had fairly spectacularly improved my levels. Artoo and I have been plodding along for 8 or 9 months now, and we seem to have hit a bit of a purple patch. The weeks running up to my appointment were pretty good, and while I've needed to do a little more tweaking since (darned basal goalpoasts on the move again) I've had another few weeks of really good results.

I think I'm beginning to see what all the pump fuss is about.

During the appointment there were slightly raised eyebrows when my sites were being checked, because of the way I was wearing Artoo. In the first few weeks of having a pump I got increasingly annoyed that the clip on the back only allows the pump to hang vertically on a belt. This meant that Artoo was sitting really high and frequently made his presence felt by digging me in the ribs. He went so far as to draw blood on one occasion when I was getting in and out of a car.

Almost all of the 'how do you wear your pump' comments I see on blogs and forums seem to be from women who smugly say how marvellous it is to be able to hang it from their bra. All very well for you lot with your copious cleavages and fancy undergarments, but not much use for me. For blokes it seems to be belts or pockets only. Like some sort of inviolable test of pumping man-dom. Since I have no room for anything else in my pockets I looked around for alternative clips. Medtronic do one described as a 'holster' (which appealed to my 8-year-old-Magnificent-Seven-loving self). I duly filled the irritating VAT/account creation paperwork, paid the exorbitant price and waited. Within an hour of eagerly sliding Artoo into it for the first time I knew that it was going to be hopeless. While yes, strictly speaking it does allow the pump to hang horizontally, it only does so with a sort of plastic 'back board' with the clip on which hangs vertically and is exactly the same size as the pump. Not only that, but the twisty mechanism is fairly loose so it's very easy to knock your pump into a wonky angle. Short period of tutting and grumbling. Original clip back on.

My solution (and the reason for the raised eyebrow) is pictured on the right of the lamentable 'holster'. It was a £1 scrunchie from Asda (other reasonably priced hair accessory retailers are available). Essentially a long loop of elastic with a cotton cover. Looped three or four times around my belt I can get Artoo to hang perfectly level by passing the clip through the loops. Because it's elasticated I can easily slide him left or right between belt loops, either more on the hip or more toward the front, to suit a seatbelt or whatever. Additionally the little bit of 'give' in the elastic means that I can tilt the screen toward me and read the display right-way-up without any 'having to get out of bag' complexities. Result!

I don't know if it is only me who had this struggle finding a the perfect method of positioning their robot counterpart, but if you are still struggling (and getting bruises around the waistline) I'd recommend a £1 scrunchie every time.

Where do you put yours?

Posted by on Wednesday, 27 June 2012

Face to face

Not so very long ago I would have run an absolute mile if someone had suggested getting together with other people with diabetes.

Biscuits and smalltalk among a group whose only common factor is a condition we all wish we didn't have? Er, no thanks. Death by PowerPoint covering "What food I think you shouldn't be eating" by someone who hasn't been living with my diabetes for 20 odd years. Hmmmm.

But the times, as Mr Zimmerman is keen to point out, are apt to change.

Yesterday I spent a very pleasant evening at the Bristol County Sports Club with a dozen or so others considering whether it might be quite nice to have a support group in the centre of Bristol. The fine folks in the regional office of DUK South West have people whose job it is to see if they can't get us all together once in a while and a new group in the city centre is being considered.

Having spent nearly 20 years flying solo as a diabetic, this blog pretty much covers the period during which I have begun to compare notes with others, both here, on a variety of forums and by extension, at occasional get togethers in real actual living and breathing life. The very thing that I would have run from for all those years has become a very real source of support, encouragement and information - both online and in person.

Earlier this month I wrote a guest post for Diabetes UK as part of Diabetes Week in the UK about the huge value (and frustration) of making very different sorts of diabetic connections. If you are still flying solo I encourage you to seek out some diabetic connections of your own - either online or in person.

What I found interesting last night was that although there were, I think, rather fewer there than the organisers had hoped for, we pretty much managed to cover all the bases diabetically-speaking: Two healthcare professionals, several type 1s, several type 2s, a couple of representatives of Diabetes UK, some newly diagnosed, some with decades of diabetic living, representatives of both 'Team Pump' and 'Team MDI' (including a woman who must surely be one of the first pump users in the UK with more than 13 years under her belt). Even more interesting was that people seemed more interested in just comparing notes and having 'a bit of a chat' than in necessarily having any kind of formal presentation/speaker. And as always seems to happen - once you put a bunch of people with diabetes in a room you just can't shut them up!

If you live or work in or around Bristol and would like to be kept informed about any future developments/meetings for this group please leave a comment below or contact Emily or Musetta from the South West office of Diabetes UK. They'd love to hear from you.

Posted by on Tuesday, 19 June 2012

Dear Medtronic...

Apologies in advance for this really very dull, slightly ranty post on the intricacies of the user-interface on the Medtronic Veo.

I've been having a fairly turbulent time with the old 'goalpost chasing' diabetes game recently. For a month or two my BG averages were climbing... then I hit a patch of a few more lows than usual. At the same time I was in the run-up to my first ever Pump Clinic (which is tomorrow, more on that later) so I was preparing with a few basal tests. These confirmed what I knew already. My basal requirements had shifted. Again. Actually it seems they had shifted several times in opposite directions, and I was still playing catch-up.

This is nothing new of course, it happened to me all the time on MDI too. Before I came across the technique of 'basal testing' I would have attributed these chaotic readings as 'diabetes randomness'. These days, when meal doses and corrections start misbehaving for no apparent reason, a basal test is often my first port of call. With Artoo by my side I have the wonderful ability to quickly try a general raising or lowering of basal even before I have the opportunity to run a proper, detailed basal test. Illness is another time when these Temporary Basal Rates (TBRs) really earn their stripes. For a period of a few days, you might need 10%, 20% or 30% more basal than 'normal'.

For a period of a few days.

I'm not sure what the fine folks at Medtronic think people will use a TBR for, but it doesn't seem that they have considered that option. Well some of them clearly have, because you can set a TBR for up to 24 hours on the Veo. But... Inexplicably, someone decided that the pump should 'warble' at you every hour, day and night, that a TBR is set. If you set it to vibrate it makes several long buzzes. If you set it to short bleeps it's a series of three little 'pips'. Day and night. 24 hours a day. To tell me something that I already know. I have taken to wrapping Artoo in bubblewrap overnight to try to save Jane's sleep (I can sleep through anything, Jane is not so lucky).

It gets worse.

That pip-pip-pip is the only warning sound I get. If I glance at the pump screen there is a hollow circle too (I'll come back to that), but after, say 12-48 hours of illness/TBR you phase out the hourly pip-pip-pip during the day. If during that time you got a 'no delivery', 'low reservoir' or other alarm you would not even think to check what it was because your pump is just intermittently bleeping through the day anyway.

Now continuing with illness as an example... during that time you might generally need more basal, so you set a TBR at 120% for 24 hours. Then you do some activity (gardening? alligator wrestling? route march?) which in your experience usually needs a basal reduction. So now you want set a different (lower) temporary rate for a few hours, then return to your 120% TBR for illness (are you still with me at the back?). What you really want, is to be told when the TBR finishes, so that you can take action then and readjust. But your TBR will end with not so much as a bleep or warble. Nothing. The only time I want Artoo to tell me about a TBR (preferably with a different sound to the more 'serious' alerts) and he stays entirely silent.

The TBR chime is SO unhelpful. It contributes absolutely nothing to the pump user, and actually can potentially obscure/conceal a 'real' alert. I have no idea what is it doing there.

To add insult to injury, however loud those TBR warblings seem to be at 3am, they are pitifully quiet during the day. As a back-up notification on the Veo, there is a hollow circle at the top of the screen that tells you that an 'alert' condition exists. If it's very serious (eg the pump is in Suspend and no insulin is being delivered) this circle is filled with black. This means that at a glance you can see if there is any kind of problem with pump delivery. Very useful you would think... Sadly, again the overlap between 'alert' and 'condition' lets Artoo down. I can choose between up to three basal patterns. Currently I have them set for 'weekend' (waking later) and also for roughly 120% of normal which seemed to be where I settled during the holidays when gym visits fell away. When I'm on 'normal' I can check for the end of a TBR (or another alert for that matter) by looking for the cicle. But... the hollow circle is also used to show 'different basal pattern'. So basically during any weekend or holiday period the circle shows all the time on Artoo. And is therefore useless.

Now don't get me wrong. I think the Veo is a brilliant piece of kit. It is very easy to use and superbly intuitive. Oddly that makes these very strange/illogical/unhelpful UI decisions even more irritating.

So please, please, PLEASE! Medtronic, when you revisit the next version of the Veo: No pointless hourly TBR twittering (or at the very least make it optional so users can turn it off overnight). A different alert sound to identify the end of a TBR. A tiny 'A' and 'B' in a corner of the screen to denote alternate basal patterns. Oh, and the option to increase the volume of alerts so that they can be heard outside of a monastery/library setting would be very helpful too.

Tch! Some people are just never happy :)

Posted by on Friday, 15 June 2012

Scapegoats, Lobbyists and the Perfect Storm

Apologies for the recent flurry of posts. It's been one of those weeks! Last night I watched the first of the BBC's 3-part documentary 'The Men Who Made Us Fat' (available for the next three weeks on BBC iPlayer).

I had been eagerly awaiting the programme since reading an article in the Guardian that someone tweeted a link to (thanks Louise!).

I was not disappointed.

It makes me wonder if this is the year that people will look back on in the future as a real turning point in the public's understanding of the obesity crisis. This programme, the article and several others in the media in recent weeks are finally focussing on factors other than saturated fat when talking about problems with the modern western diet.

The programme focusses on the decisions made in the US in the 1970s which profoundly affect the current mainstream thinking on dietary health and what we eat today. Decisions which in the end seem far more based on economics and agriculture than health. I can't pretend to be any kind of expert on these things, having only a passing interest, but it was amazing for me to listen to a programe that (for once) did not just bang on about fat in the diet when talking about the western world's weight problems. Unsurprisingly Ancel Keys influence on the subject was covered. He, famously, took against saturated fat. According to the programme, on a trip to the UK in the 1950s he began to believe that saturated fat was at the root of the major health issue of the time - heart disease (cue grainy black and white pictures of toothy children scoffing fish and chips). He then set about proving his theory.

I have heard the name Ancel Keys many times before. I have seen his work vilified and passionately defended on several diabetes forums. Sadly, in the end I don't think it matters what he actually said or wrote at all. His proposals seemed to be based on a mediterranean-style diet with plenty of fresh veg and olive oil and only moderate carb intake. What happened is that when it came to the question, "What is causing all this heart disease, fat or sugar?" the incredibly powerful industry lobbyists had their scapegoat. Saturated fat became the enemy. There was no 'saturated fat' lobby. No specific industry to protect or promote. The incredibly powerful Sugar Association in the US (powerful enough it seems, to prevent the World Health Organisation from setting a maximum limit on recommended sugar consumption), and the political might of the US agricultural industry swept everything before them. The portions got bigger... The stuff we ate got sweeter (sometimes with lovely shiny 'low fat' labels)... The snacks were more relentlessly available... and our self control was, frankly, not up to it.

I'm not (quite) cynical enough believe that the soft drinks/processed food industry chose the cheaper corn syrup/glucose-fructose syrup/HFCS as sweetener of choice knowing that it turned off leptin, the chemical in your brain that tells you when you've had enough to eat. I don't think the fast food giants and food manufacturers cared about anything other than increasing their market share and selling more and increasingly refined and processed products. Having said that, it was with horrifying inevitability that the spokesperson for the US soft drinks industry said that she did not believe her industry's products had anything to do with the crisis in the western world's waistlines (despite being the single largest source of calories in the US diet).

For the last 40 years we have been told that fat is the enemy, saturated fat in particular. Carbs are good. Fat is evil. Attention is now finally veering towards sugar. And if you consider the 'Tsunami' of glucose that hits the bloodstream when eating sugary foods to be a bad thing, then perhaps it is worth reflecting that many of the things I have been told are 'starchy' and 'slow release' have proved anything but under examination from my blood glucose meter (even with the benefit of modern 'fast acting' analogue insulins to tame them).

I'm not some kind of be-sandalled ultra low carb evangelist. To be honest I have profound reservations about the extremes of viewpoint in any kind of discussion. But in a world where people with type 2 diabetes (essentially an intolerance to carbohydrate) are continually told that they must base every single meal they eat on the very substance which most rapidly raises blood glucose and threatens to fry their eyes, feet and kidneys it was refreshing to watch a programme that raised serious questions about our addiction to carbs in general and sugar in particular. At the risk of sounding like my parents - once again it seems that 'moderation' is the blindingly obvious, crushingly simple answer.

The next edition of the programme considers ballooning portion sizes. I can't wait!