Shoot Up or Put Up

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by Alison

Medtronic European internet forum 2012

30 August, 2012 in events

Everyone’s second favourite pump & CGM company Medtronic once again brought together a bunch of interweb-savy diabetic types in Switzerland for their almost annual internet forum. The last two forums were pretty UK focussed, but diabetics have now been discovered outside of the UK in the deepest, darkest depths of Europe, so this time was a veritable Eurovision song contest with representatives from UK, Germany, Belgium, Holland, Italy and Greece.

European bloggers proving they can talk as well as write

European bloggers proving they can talk as well as write

There wasn’t much in the way of news from Medtronic that I can share with you without them hunting me down and shooting me for breaching my confidentiality agreement. But take it from me, it was really interesting to get an update on what’s happening, but there was no major news that would be worth getting shot for.

It was encouraging to see that the evidence base showing pumps and CGM make a difference to diabetes control has grown massively in the last few years, with more and more research results being published - this makes it easier to put together a strong argument for them to be funded. But we all know that’s just the first hurdle – in the UK even when people meet the NICE criteria for pump funding, they’re often refused it. That’s where we patients need to be strong in campaigning.

It was good to talk with our European friends about how laws and experiences differ significantly in countries across Europe. In Italy, companies aren’t allowed to talk to patients about pumps, or even have a picture of them on their website, all communication must go via the Dr. In Holland, people talked about not being able to get their insurance companies to fund new pumps or CGM. Across the board, while the details differed, the common theme seemed to be that we like pumps and CGM, but people are struggling to get hold of them or in some cases, even to know that they exist.

Obligatory group photo, football style in recognition of the Junior Cup event

Obligatory group photo, football style in recognition of the Junior Cup event

And as a mixture of diabetes bloggers and forum administrators we seemed to come to a common conclusion. That we’re motivated to do this because we want people to know what’s out there, what good care looks like and how to get it. We’re all frustrated by the same failings and are plugging away trying to move things forward, a little step at a time. What we struggle with is how to reach the people who are alone and have only their own experiences to measure their care against – how do we spread the word further?

Thanks to Medtronic for organising and funding the meeting – it’s always useful to speak to others about what’s going on in that big bad diabetes world. Here are a selection of the blogs that were represented at the event alongside other forums, tweeters and Facebookers:

Mydiabetesdigital – first digital lifestyle magazine for diabetics (available in English, Dutch, German & French)
Diabetando – Italian diabetes blog
Sweet-kid.com – written by the Greek father of a diabetic child (all in Greek, but the flags at the top of the page will translate it into local languages)
Mein-diabetes-blog.com – you’ll need to know your German for this blog written by Ilke and Finn who both have diabetes

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by Alison

Football ends in tears

28 August, 2012 in news

Last weekend saw the highlight of the diabetic footballing calendar. 132 kids with diabetes from 12 different countries, plus their parents/supporters headed to Lausanne, Switzerland to take part in the finals of Junior Cup Diabetes 2012. Medtronic have hosted the event for the past 6 years. As they said at the opening ceremony, the event is about showing that diabetes doesn’t stop you, and also about having some fun. It was great fun, but it also made me cry.

As the teams arrived, and I saw the excitement around them, I couldn’t help thinking it was great that having diabetes had given these kids such an amazing opportunity – to take part in an international football tournament at the age of 10 or 11. My expert pre-match analysis concluded several things – the Dutch team and supporters were very orange, the Canadians very intimidating when they turned up to the opening ceremony looking very professional in team tracksuits, the Brits very loud with their vuvuzelas, the Germans impressive with their coordinated chanting of “Deutschland, Deutschland” and the Irish very green and very noisy. And that’s without mentioning the Slovakians, Hungarians, Italians, Swiss or Belgians. 

My interest in football and my knowledge of it are about equal at zero. I will admit to having come home and Googled Christian Karembeu to discover that the man taking the kids through warm up was indeed a member of the 1998 French World Cup squad and a winner of the Champions League with Real Madrid. That’ll explain why despite my lack of knowledge, the much better informed kids looked over the moon to be playing football with him.

Over a day and a half of matches the teams fought to get their hands on the cup, and despite an exceptionally strong start from Holland (to the point where I was wondering how unethical it would be to tamper with their insulin at lunch) the eventual victors were Germany.

But it wasn’t the football that made me come home with tears in my eyes. Diabetes was everywhere at the event with people doing injections in dinner queues, quietly going hypo by the side of the pitch, or entire teams blood testing at the same time.  But it was a minor sideshow, like the half time entertainment people are aware of but doesn’t overshadow the game. Exactly as it should be.

For me, the sight of 132 kids taking diabetes by the scruff of the neck and seizing the opportunity it had given them was really emotional. I recognised the determination of the parents cheering from the sidelines that diabetes wouldn’t stop their kids from doing anything. It made me think of how lucky I was to be brought up by parents who decided at my diagnosis that my diabetes was going to be very much the sideshow, not the main game. I’ve seen diabetes ruin people’s lives. It’s beaten them down to the point where it controls them and stops them from living the life they deserve. That breaks my heart. From what I saw, these kids are going to control their diabetes, there’s no way it’s going to control them.

Congratulations to all the teams, you did yourselves proud.

Thanks to Medtronic for inviting me and paying for my travel. I should mention there was also a bloggers meeting going on at the same time which I will talk about later, but for now, all the attention should be on those brilliant families living well with diabetes.

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by Alison

Good luck to Team GB in the Medtronic Junior Cup

22 August, 2012 in events, news

This weekend, 11 multi-talented youngsters will be heading to Switzerland to represent Great Britain in the Medtronic Junior Cup final – an annual football championship for kids with Type 1. To qualify for the team they needed to be pretty nifty with a football, and also play at being their own pancreas full time. Out of 120 applicants, 55 got to go to Wembley for the qualification rounds and now the chosen 11 are off to the finals.

I have no interest in football. But I have a significant interest in diabetes. And a massive interest in seeing kids with diabetes live life to the full. How many 10 year olds with a working pancreas get to play in an international football tournament? It’s great to see a positive side to having diabetes.

I’ll be in Switzerland over the weekend for Medtronic’s latest bloggers forum, so I’m hoping I might get to see some of our talented footballers then. In the meantime, good luck to all the 132 kids from 12 countries taking part and especially to the Great Britain team – may your goals be plentiful and your hypos be scarce.

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by Alison

Enlite – a couple of months in

10 June, 2011 in Kit & equipment

I’m a couple of months into life with the new Enlite CGM sensors, so how’s it going? Have my thoughts changed since my first impressions?

Insertion. Genuinely, it has never hurt once when I’ve inserted an Enlite sensor. The marketing spiel claimed it wouldn’t hurt, but I didn’t actually believe it! I’ve got the hang of inserting it now and it’s pretty much second nature.

Accuracy. The marketing spiel proclaimed greater accuracy. Is it true? I’d say possibly. I find them to be less accurate during the first 24 hours than the old sensors which is a pain and doesn’t seem to be improved by calibrating more often. After that first day, I find they’re the same or better than the old sensors. They’re definitely more accurate when it comes to lows and highs.

With my old sensors, if they weren’t accurate I would sometimes use the tried and trusted method of fixing anything technical – turn it off and turn it back on again. For sensors, this means turning the sensor off on the pump, turning it back on again and then doing “link to sensor” so it thinks it’s a new sensor. That often sorted any issues for me, although I haven’t tried it with the Enlites before the 6 day mark.

Longevity. They’re licenced to last 6 days and all of mine so far have made it that far. I got one to 12 days.  All others have lasted the full 6 days, at which point on half of them I’ve turned off the sensor, removed the transmitter, recharged it, reattached it to the sensor, turned the sensor back on and done “link to sensor”. Two hours later it asks for a calibration. When I’ve restarted after 6 days, for all but one I’ve found the accuracy has tailed off after about 9 days of use.

Positioning. Where to wear the sensor? I wore my old sensors on my back and stomach and always found the ones on my back to be more accurate. I’ve tried the Enlite on both, and found there to be no difference in accuracy between the two.

Securing. To tape or not to tape? The Enlite comes with tape attached to secure the transmitter which seems pretty robust, but I’ve never relied just on that, I’ve always added some extra tape over the top.

All in all, they’re not life changingly better than what came before, but they seem a bit more accurate and they certainly hurt less to insert. Compared to others I seem to have had a pretty smooth ride with CGM and have had few problems over the last 4 years. That experience has continued with the Enlite. It’s a step in the right direction.