The Big Event

So this weekend was the first time in my adult life I’d been in a group of more than 15 diabetics who weren’t nervously waiting to be talked to by the consultant.  I was willing attendee of this site’s official favourite charity Diabetes UK at The Big Event held at Warwick University – confusingly located near Coventry.

After initially grabbing our name-tags at registration we then went out to the sports hall where the complimentary childcare was being organised and deposited two excited children.  As they were also looking after diabetic children we managed to skip the detailed drop-off required for those kids with more specific medical requirements.  The childcare was run jointly by Fit4Sport and Diabetes UK volunteers and their families.

On return to the main building we were met by the charity’s President, Richard Lane.  A wonderfully welcoming man who seemed very impressed by my parents’ decision to get me a life membership soon after diagnosis.  He then called over Barbara Young who was less impressed and gave a smiling comment of “Well, we have made a net loss with you haven’t we.”

We then proceeded upstairs to the Exhibition Hall (a slightly grand name for a large conference room) to see stands from some well-known and not so well-known names in the field of diabetes care. Those present included Bayer, NIHR Diabetes Research Network, Mylife Diabetes Care, Lacorium Health, Cellnovo, Mind, Abbott and Diabetes and Diverse Communities.  In this room was also a constant supply of coffee and biscuits and a Zumba area in the corner that sadly always looked empty even with a willing instructor trying to entice non-willing participants.

The final corner was filled with three small ‘networking’ tables that always seemed full of attendees talking about various things.  We had a look at most stands and had a good talk with Bayer who were promoting their new XT meters that use the newer type of strips that promise an accuracy of 10% variance instead of the usual 20%.  If true this is fantastic and I have a meter already at home to try but haven’t had chance yet.  I asked if the new strips would be added to the Link machine for Medtronic Veo users and, yes, this is going to happen but it needs approval from Medtronic first, hence the delay.  Once produced the representative expects it to resemble the Contour USB design instead of the current Contour shape. I fed back that for me case size is also key and this was backed up by others there but whether this gets back to those that make the decision is unknown.

There were always five workshops on offer, split into appropriate categories. As an adult male T1 my choices were relatively easy.

  • Workshop 1 10:30

Subject: Healthcare Essentials: What diabetes care to expect (Type 1)
Delivered by: Su Down, Nurse Consultant Diabetes and Simon O’Neil, DUK Director of Care, Policy and Intelligence

Key points:

  • Went through all of DUK’s 15 Essential Checks.
  • Largely discussion based with many examples of poor / inconsistent care.
  • Details were added to the bones of the essentials with pearls of wisdom such as that you should ask the person checking your feet if in clinic or GP whether they are trained to know what to look for.  More info here
  • The first time “Insulin passport” has been mentioned to me.  For those like me that don’t know; by the end of August every diabetic should have a passport given to them– small credit card sized note – that shows which insulin(s) they use and how it is supplied – vials, pens, cartridges etc.
  • First instance of Diagnosis Top Trumps that kept me and Laura giggling for the rest of the day as everyone seemed to start their statement with “I’ve had diabetes for xx years”. I think it was compulsory to be used as a badge of honour but we missed that instruction at registration.

Overall a good session with plenty learnt but a little short on time as an hour wasn’t enough to discuss each ‘essential’ with participant interaction along the way.

The interval gave a chance for refreshments and we spoke with Chris and his wife about the benefits of pump over MDI. The hard-sell was going well until approached by one lady who opened with “Oh, you’re not pumpers are you? I’m trying to stay away from them as I hate mine and am trying to give it back.”  Once again this proved #teampump isn’t for everyone.

Workshop 2 12:00
Subject: Group workshop – Living with Type 1 diabetes
Delivered by: Dr Katherine Barnard, Health psychologist specialising in diabetes care and Nigel Jenner, Diabetes Care Event Organiser

Key points:

  • Group whinge about how hard it is to live with diabetes and the issues we face with other people and healthcare professionals.
  • Although I’d hoped for a bigger discussion on ‘how’ to deal with the downs of living with diabetes it was more focused on everyone releasing their issues and agreeing everything is crap.  A little hard to comprehend as not everyone does face a challenge in every moment of every day
  • One useful fact picked up from attendee Anne Cooper was that the Department of Health consultation on food labelling ends public consultation on 6th August.  If you like carbohydrate details on your food packaging and would like it even better you must tell them. Now! Go do it.  The rest of this piece will still be here when you get back!

Nigel was one of the most inspiring diabetics I’ve ever met who’s achieved so much in sport and life and hasn’t hidden his diabetes away at any stage with fantastic control results.  However, the body language between him and the Doc was fantastic as he explained to the room of people who were at full moaning-speed that he achieves great results by testing every hour, every day and rarely strays from a range of 5 to 6.5 mmol/L.  This was paired with Dr Barnard saying that having a 13 or 15 at sometimes wasn’t an issue and we shouldn’t worry about it all the time.  Daggers flying all around the room from the presenters and participants alike.  Hilarious.

Lunch was a chance to see the kids and we expected at least one to want to come and spend the rest of the day with us.  Nup, they were having too much fun to even think about it so we retreated back upstairs for lunch.  All food was packaged which was excellent for those in the room counting the carbs but it proved the point made by Anne in the last session when the chocolate muffin labelling had the carbs shown per 100g but didn’t say how heavy it was!

Workshop 3 14:15
Subject: Pumps, apps and other gadgets
Delivered by: Chris Cheyette, Senior Diabetes Dietician at Kings College Hospital and Melissa Ford-Holloway, a professional diabetic (not her official title but you know what I mean).

Key points:

  • The room was packed for this one and it was delivered expertly although at speed. Again this was due to a short time to discuss a very wide range of topics.
  • They went through the history, present and a little bit of the future of pumping, CGM and diabetic tech.
  • Signposting was given to where to look for further information on each section which was very useful as it was hard in an hour to cover everything in detail.  One useful bit for me was that an update to the Carbs & Cals iPhone/iPad/iPod app is coming shortly.

Maybe splitting the session between those who have pumps and those who don’t would have been beneficial? I found it very informative but I was aware what the terms they were using meant. A few times people asked “What does that word mean?” Not a criticism on the attendees or the presenters but maybe something to consider for next time.

The final break was a chance to speak to Chris again and he said that today had given him the knowledge and confidence to be a little more demanding at his upcoming annual review and would be discussing a temporary CGM to investigate his morning highs and also the possibility of a pump going forward.

Workshop 4 15:45

Subject: Research update: focus on Type 1 diabetes
Delivered by: Dr Timothy Tree, Senior Lecturer, King’s College London introduced by Richard Lane, President of Diabetes UK

Key points:

  • A very informative and fairly detailed presentation on the history of research and where it’s going forward on the causes and cure of T1. Pitched at a level that most, if not all, the room were comfortable at. The use of Lego men certainly helped explain the more scientific stuff in a much friendlier manner.
  • As with most presenters during the day Dr Lee was a diabetic and this always helps to get the attendee to buy into what he was saying.
  • Fact of the day that my son now loves is that Egyptians in 1500BC identified diabetics by getting them to wee into the sand next to a fit person and watching which pile of wee the local ants went to identified which had sugar in their urine. And this developed in the Middle Ages to the doctors tasting the urine himself. Ew, but the kids loved that!
  • Dr Tree’s research believes the cause is genetically based and they are working on ways to counteract the ‘bits’ that attack the other ‘bits’ that create the insulin – overly simplistic interpretation but I’ve slept since then.
  • The key thing for me was that their research has proven (to them) that any cure might not be restricted to those recently diagnosed with some evidence that even after 50 years the vital cells were still present in lower numbers.

A truly engaging presentation from a man who definitely knew his stuff.

We then went to pick up the kids who’d had a fantastic day and hadn’t missed us at all.  Not even a little bit.  Thank you to all those who had the unenviable job of corralling a wide age range of kids together.

Overall a really good day with some real highlights and not all of them intentional.

Good points:

  • Meeting other diabetics and discussing standards of care and what is / isn’t available in different parts of the country. Meeting other diabetics wasn’t a frequent occurrence to many we spoke to.
  • Childcare facilities meant that we weren’t always worried about kids being bored or having them distract us.
  • Central(ish) location meant it was accessible for a large chunk of people.
  • Low cost.  As a member I was able to buy a family ticket for two adults and two kids for £25 and that included refreshments and the aforementioned childcare. Bargain!
  • Meeting the people involved with Diabetes UK who organized the day pretty slickly.

Bad points:

  • Seat shortage in some rooms as the venue was a little limited in size for the numbers there.
  • Some sessions were overly general so time got eaten up very quickly where more detail might have been given.
  • The general relaxation areas were a bit small so it was sometimes hard to mix with other attendees located in other rooms.
  • The exhibition lacked a few key attendees.  I would have liked to have seen Roche and Medtronic whose products I use mostly.  Maybe the simultaneous INPUT roadshow up the road in Nottingham was a factor there.

I know another event is already being discussed for next year and I’d recommend it for anyone touched by diabetes as it gave some new bits even for an old hand as me – in the Diagnosis Top Trumps scale I think I rank as a Lancia Delta Integrale in the Supercar Top Trumps from the 80s.

Bing bong!

Ladies and gentlemen this is a live blog update from the Virgin trains service to London Euston

(wireless internet on trains, nice move Virgin).

I was sitting here quietly trying and failing to do something clever with Excel when my ears pricked up, the man opposite me uttered the D word.

As ear wigging on trains is pretty much compulsory, I listened carefully. Whilst simultaneously stirring 3 sugars into his coffee and eating a bacon sandwich the larger, older gentleman opposite me  explained to his friend that his doctor was very worried about “the diabetes” and as the tablets didn’t seem to be working he might have to start taking “the jabs”. There was apparently nothing else he could do about it.

Now, I hate it if people comment on what I eat – I know the impact of food on my diabetes and make my choices accordingly. I know certain foods will raise my blood sugar and I make the decision whether that particular cake is worth the extra insulin or not.

So what dear readers do we learn from such an encounter on a high speed train? For me it reinforces my belief that education and a sense of personal responsibility are the key things when it comes to living successfully with diabetes. My diabetes is my problem and I need to take responsibility for it, rather than see it as an issue for the Dr to deal with. On top of that I need sufficient quality education to understand the consequences of putting 3 sugars in my coffee. At that point I can then decide whether its worth it.

“So what happened next?” I hear you cry. I wrestled with whether I should have a chat with the man, sharing diabetes knowledge etc but by that time his friend had got off at Nuneaton and the man promptly put his iPod on and fell asleep. I’ll get back to my spreadsheet then.

One man diabetes testing unit

Over the past few days I’ve been surfing (or should that be paddling) around the Intermaweb looking for good blogs about diabetes to add to the sidebar over on the right hand side there. This is so when you get bored of weak puns and my sometimes naked aggression on these pages you can go off and read some posts by some infinitely more talented writers.

A few things have struck me about the myriad blogs I’ve scanned through. Firstly lots of people start blogging about a subject, get bored and abandon their blogs forever and they remain stuck eternally like some sort of spooky, haunted ghost town with tumbleweed rolling emptily through the pages.

I sometimes wonder what happened to these bloggers. Did they just stop writing, or did something much more sinister (and interesting) happen? A freak yachting accident, cutting short a promising blogging career perhaps. Who knows? And perhaps more to the point who cares?

Unsurprisingly a lot of diabetes blogs are written by our American cousins and what leaps out at me is the vast cost of diabetes in America, especially if you have the misfortune of being uninsured.

Since 1947 the United Kingdom has had the rather wonderful National Health Service (NHS) which aimed (and still aims) to be free at the point of entry. This means that all my diabetes kit – the lantus, the humalog, the test strips, the meters and everything else – is all completely free of charge. (I know, pedants, that I pay for it indirectly through my tax contributions but bear with me here).

Although much maligned by vile rag the Daily Mail, I think the NHS is brilliant (yes, I know it has its faults (I refer
mainly to unhelpful receptionist dragons)) and I think we often forget just how lucky we are to have the old thing.

The quantity of free kit I get does mean I’m pretty free and easy with it – not worrying if I use a zillion test strips a day. Perhaps the best example of this in practice is being a one man diabetes testing unit.

My wife and I frequently meet up with our friends in a pub in the west end of Edinburgh. Of course, if you’re knocking back a few beers over the course of several hours one needs to test and inject. Not really being the shy and retiring type, I whip out my testing kit and shoot up at the pub table in front of everyone.

Perhaps surprisingly this never results in exclamations of horror, projectile vomiting and fainting from my companions, but instead a chorus of:

Cool! Can I have a go?

For reasons of sanity people don’t get to have a go with the insulin but I do very often end up going round the table checking everyone’s blood glucose – getting through a metric tonne of strips and lancets in the process. There’s often a degree of competition to see who gets the lowest reading (I don’t really know why they do this either).

Because of this free kit and my free use of it, I’ve probably managed to educate a whole load of people about diabetes and demystify the affliction over the years. I haven’t yet managed to actually diagnose an unknown Type Two yet, but it’ll happen sooner-or-later and I’ll let you all know here.

Watch this space and hurrah for the NHS!

The Tale of the Drunk Diabetic

Beer. Sweet, Sweet Beer
Beer. Sweet, Sweet Beer

By Samantha

Beer. It’s brilliant stuff. It tastes nice and it gets you tipsy. However, for a diabetic, it can be pretty nasty. The thing with beer is that it shoots the blood sugar levels through the roof and then later on the diabetic in question goes hypo. And if after drinking enough beer to make yourself sufficiently drunk, stumbling home chatting about rubbish is more fun than worrying about what levels the bloods are at. Until it gets to the stage half way home where you start panicing that you’ve left the monitor in the pub, and proceed to sit down on the cold pavement and start rooting through your bag, only to look up and see a policeman gazing down at you.

“Are you ok there?” – nice policeman
“Yeah…I’m a bit drunk and diabetic and I can’t find my blood machine anywhere!”
“Oh. That’s no good. Are you feeling funny then? Let me help you find it” – nice policeman

And then, nice policeman sends you on your way, telling you to look after yourself and make sure you eat some carbs before bed. Being in this inebriated state means it can take much longer to stumble home, especially if you haven’t had any dinner. So, when at nearly midnight you stumble in and your other half decides it’s high time to cook spaghetti bolognaise, it seems like a good idea at the time. Check the blood glucose levels and they’re at 2.3mmol/l, so the policeman was right to tell you to eat something.

But of course, you start to panic, and the other half has to sit you down with a strong coffee and some rather nice orange glucotabs, and then presents you with dinner. You guess how much insulin to have, and then proceed to spill it all over yourself. Not a proud moment there eh? And then of course you realise that you really do need to go to bed, because the world is spinning. But your sugars are still low, and you can’t find your lantus pen ANYWHERE, and the search starts again. And the only one you can find in the spinny world is the old one, which doesn’t do the amount of lantus you need. So you make do, and crawl into bed where sleep, or rather passing out, comes quickly. Morning comes, and you wake up to levels that are way too high, and they run throughout the day. Ah, diabetes.

This is a story that I’ve found myself repeating on many an occasion. And each and every time I tell myself that because drink screws so horrifically with this diabetes, next time I’ll limit myself. And I never ever do. I still go out after work and knock back the beers like a trooper, panic because my sugars are up in the twenties and then panic even more when they fall through the floor.And it always amazes me how booze does that. Beer contains carbs, so it’s suggested that you need to bolus appropriately. But the alcohol in it conversely lowers blood glucose levels. So it’s a catch 22 situation. I’m not too sure of the ins and outs of the sciency stuff to do with it, but it’s interesting to say the least.

It’s a shame sometimes that diabetes seems to get in the way of going out for a night with friends in the pub. But I guess, sometimes it’s needed. And the stories that can come from it can make for some brilliant entertainment. I mean, how many people have had a policeman help them find their blood glucose machine? Not many non pancreatically challenged people let me tell you!

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Samantha is Type One and regularly blogs at http://www.talkingbloodglucose.com/

Comatose and rotting toes – the lighter side of insulin dependency