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Should diabetics be special?

5 September, 2012 in Living with diabetes

For the purposes of ego inflation, I like to think I am special. Most people are in some way. But is it a good thing to be seen as special just because of my broken pancreas?

Having experienced the thrill, excitement and reassurance of attending events for kids with diabetes, both as a pancreatically challenged child and now as a slightly over emotional adult I have a blinkered view of these events. I love them. But has my overwhelming enthusiasm blinded me to the risks of these events?

Neville raved about the East of England Paediatric Diabetes Games the other week. He’s a very sensible dog and I agreed with every word he wrote. But over on Facebook, one of our readers didn’t. We like it when people do that, it does us good to be knocked off our internet based soapbox every now and again.

She made an interesting point. By holding special games for diabetic kids, are we sending a message to the world that they’re different? That they can’t compete on an equal footing with the pancreatically privileged? Are we doing these kids a disservice by making them out to be special? Poor Jimmy needs 4 injections a day to stay alive and if we don’t count his breakfast carbs correctly he’ll keel over halfway through the 800m or may even attack you with his javelin. Best for all concerned that we let the diabetics play together. And don’t ever pick one for your school sports team, they’re a liability. I mean, look at Sir Steve Redgrave and Gary Mabbutt, what did they ever achieve?

None of this had ever crossed my mind. To me these events are a massive learning and confidence building opportunity, wrapped up in a thick layer of fun. For kids and parents wary of walking the insulin/exercise tightrope it’s a chance to experiment in a safe environment, to swap tips and to be inspired by what others in your situation can do.

But the press always cover these events by talking in a slightly patronising manner about how brave these children are. Normally with an over-dressed reporter standing in the rain looking frankly amazed that such sick children can even make it out of bed in a morning, never mind run round a track. Doesn’t that undo all the campaigning we do protesting that diabetics can do anything because we will master that delinquent pancreas rather than be controlled and defined by it?

This is where we get into the territory of how hard it is to please a diabetic . We want you to know that diabetes is serious, we need you to dip into your pockets and fill the bottomless research and support coffers. But we also need you to know that we can do pretty much anything we set our minds to. And we really need diabetic kids to think that so that they’ll grow up confident and ready to take over the world.

So, you’ll be surprised to hear that I still come out massively in favour of “special” events. I can see the risk of making it look like diabetics can’t compete on a level playing field, which I hadn’t even considered before. But I think it’s a risk worth taking. Because the benefits of these events are so significant for the people involved.

What do you think?

Tags: attitude, events 10 Comments »

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

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

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

Tags: big pharma, events, medtronic 3 Comments »

by Neville the Newshound

Diabetic kids take part in the Games

30 August, 2012 in news

The Paralympics may be big news at the moment, but this dog is chasing his tail with excitement over the snappily named East of England Paediatric Diabetic Games.

Diabetes specialist nurse, professional pancreas (she has Type 1 too) and general girl wonder Claire Pesterfield brought together 200 children with diabetes from 17 hospitals for their own version of the Olympics. And she did it just days after spending the weekend supporting the UK team at the Junior Cup. This woman is one toy short of a dog basket, which is a good thing, because otherwise this stuff wouldn’t happen.

The ITN news report shows that even pouring rain couldn’t stop play. Congratulations to all the kids involved, and to the organisers, you’ll sleep like I do after a long walk now this is over.

Tags: events, exercise 3 Comments »

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.

Tags: events, exercise, football, medtronic No Comments »