CWD Friends For Life 2012: Hope and Onesies

In 1995 an inspirational man named Jeff Hitchcock, the father of a little girl who had a disease called type 1 diabetes, decided he would use this quirky new thing called 'the Internet' (which he claimed would be a 'big thing') to create a website where parents of, and children with, the condition could talk to one another and find friendship and support.  It quickly caught on and before long became an institution to its already devoted members and growing number of people looking for just what Children With Diabetes could offer; unity.

Five years on in the year 2000, a lady named Laura Billetdeaux, herself a member of CWD and parent to a young boy with T1, posted a simple message that she was heading to Florida and should anyone wish to meet her there, she would be waiting.  Laura is a person with whom you immediately feel at ease.  She is confident, and warm.  On that fateful day 500 people felt the same way and descended upon Florida where the annual Children with Diabetes event, was born.

Almost two decades on the CWD conference, now dubbed 'Friends for Life', draws hundreds of families from across the United States on a yearly basis. For parents it is a place of companionship, learning and support. For the children, it is an opportunity to let down their hair, rekindle old friendships and have fun just being a kid. All food on offer is carb-counted, green arm-bands show membership to the club and hypo stations dot the halls, making it the safest place in the world.

Four years ago CWD came to the UK and this, was my first year. 

The buzz on Friday night was electric as hundreds of people excitedly arrived at the Beaumont Estate hotel in Windsor.  Which room you were in or what the hotel was like was secondary, this was a time for finding old friends.  And making new ones.  As the sea of enthusiastic people ebbed and flowed through hallways, the atmosphere was thick with excitement. 

The sponsors Animas, Medtronic, Cellnovo and Accu-Chek were out in force with balloon magicians (most awesome CV title ever!), face-painting, cuddly toys and an X-Box Kinnect to keep the kids suitably pumped (no pun intended!).

People, having a ridiculously wonderful time!

Olly Double, everyone's favourite comedian and T1 parent, whom I had the pleasure of meeting at the Spring Wellness day a year ago, opened the floor on Friday with a his brilliant stand up - including an audience-priming version of H-Y-P-O (to the tune of YMCA). Any opportunity to look at the brighter side of diabetes (yes, there really is one) is a welcome event.  Then it was drinks in the bar and off to bed.

Saturday began with an inspirational talk by DiabetesDad  Tom Karlya which kicked off the day at 9am.  By 9.13am, the first tears rolled down my cheek as he told the story of his daughter's diagnosis when  - in his words - she had IVs in both arms and was asking him to 'fix'. He told us with conviction that diabetes 'just won't do' and asked us to take responsibility for looking out for each other.  As the parent of not one but two T1 kids, he told us with the most admirable honesty about the mistakes he had made over his years (right there with ya, Mr K).  Between the laughter (he tells one hell of a good story) and the tears, there wasn't a dry eye in the house by the end.  

The weekend progressed with talks about advocacy, balancing food, exercise and sick days along with a host of other sessions packed with information to help build an arsenal of weapons with which to take diabetes on. We were taught how to avoid spikes after meals by all-round dude Gary Scheiner and how to negotiate family life with diabetes by the most 'New York' New Yorker you'll ever meet, Joe Solo. InPuT presented our own talk on how to get the best pump support (with my own section on Managing Expectations and how to avoid Competitive Parenting).  But for me the session which stood out above all others was one in which two psychologists, Jill Weissberg-Benchell and Korey Hood, led a group talk on Avoiding Burnout. Guaranteed to be a highly-emotional session by virtue of the subject matter, when the first person spoke with their voice already cracking I knew this would be nothing, if not a session to connect us.  For a precious hour we shared stories, offered hope and connected with people    who 'get it'.   Finally, Lesley Jordan profoundly said, "My purpose of being on this planet, is to do more than get a perfect HbA1c."  The room agreed and for just a moment had not a single word to add.

Learning from each other how to avoid burnout

As Sunday came to a close and the final talk, jam-packed with hope, was given by Jeff Hitchcock himself, I couldn't remember the last time I had cried so freely, re-charged so quickly and connected so deeply.  People you had never met before, and might never again, took the time to smile and be your friend.  The kids and young people, in the wonderfully inexplicable way only kids can, launched a mini-craze within the world we had created of wearings onesies 24 hours a day.  And as I basked in the glow of the event and looked on as the last of the revellers peeled away, emptying the fridge of the hotel's remaining complementary Diet Coke as they went, I knew, this weekend would not be forgotten.

This will not be my last Friends for Life.

The Input team, confusing the 'Madness' dance with the one from Blues Brothers, at the Roche 'disco'!

InPuT Luton roadshow - a resounding success!

There aren't many things I would give up my Saturday for.  This is my day. In fact, come cricket season I usually relish the days when the husband heads off to a game and I can grab a few hours to myself to batten down the hatches, get some 'me time' and watch a bunch of really girly crap on TV, like 'Road Wars' and 'Police, Camera, Action'.  Tomboy alert!

Well this Saturday was InPuT's first 2012 Roadshow which, as someone who is an avid supporter  of InPuT, I volunteered to help out at.  The brainchild of Lesley Jordan, the roadshows are a way of getting the word out about InPuT, insulin pumps and NHS funding.  Areas were chosen by looking at where in the UK insulin pump uptake was at its lowest and Luton (the lowest in the UK) was an obvious choice as our starting point.  Having had no way of estimating numbers and no idea how many people would want to come along (or even whether anyone had successfully received a leaflet or seen our media build up), I have it on good authority that the whole InPuT team were suffering synchronised insomnia at 3 am, worrying about an empty room filled with some not-so-impressed medical reps, wondering what they could have been doing instead of this, and a rapidly cooling pot of coffee to cater for 40, being slowly chipped away at by the humble three-strong InPuT team! My concerns began to ease however, when the first arrivals showed up 30 minutes before we even had the coffee at the ready.  By mid way through, we had over 20 attendees.

For someone like myself, an extrovert with a penchant for talking about anything diabetes related, chatting to such a wide variety of people was as insightful as it was at times frightening: "My hypos aren't debilitating, but I am too scared to drive any longer".  "My son isn't allowed one as his HbA1c is too high."  I'm not sure if it is poor education on the part of the professionals wreaking havoc in the Luton hospitals or whether the PCTs just don't want to 'give it up', but within an hour I had spoken to 4 different groups, three of whom had a type 1 diabetic with them who by my count, should already be on a pump.  There were conversations with those who would be at a squeeze to fit the criteria (HbA1c consistently over 8.5% or debilitating hypos) and those who have been fitting it for years.  There were children, couples, older people and a family with three generations of it (who I immediately fell in love with when the mother  described them as "a group of five; 3 diabetics and 2 normals").  I had the chance to demonstrate my own pump, put minds at ease that you can't feel the cannula, that you don't have carry it around in a custom made rucksack and that for a girl, your boobs come very much in handy! 

We had superb attendance from the pump companies too, which I feel only served to strengthen the motivation to push for a pump.  Although InPuT will clearly never endorse one pump over another, the unique selling points of all the pumps on offer were out in force.  Medtronic were there with the low-glucose suspend and integrated CGM capability.  Accu-check were there with the Combo pump, a snazzy remote control enabled pump with integrated bolus calculator (no need to rummage through the clothing with this one).   Cellnovo (not-yet-available sexy patch/micro pump) were there showing off their 'smart-phone like' technology.  Animas came with their waterproof pump (hello to the surfers, swimmers and watersports types) and soon-to-be integrated Dexcom CGM.  Advanced Therapeutics (the folks who brighten our drizzly shores with the Dexcom 7+) were also there showing support and I took the opportunity to finally meet the director, someone who had been on the diabetes circuit for decades and is a true time-tested expert in the field.

After three and a half hours of talking away, we had just shy of 40 people come along, of which we estimate 21 people had type 1 diabetes. I would suggest that two thirds of those people at least, should already be funded for a pump. People generally seemed to stay for at least an hour thanks to the wealth of information they could soak up from the reps.  The coffee pot most certainly ran dry.

There were a few laughs as two thirds of the InPuT team near on cleared the Medtronic stand of their Mio's (cannulas complete with disposable inserter) after two failed cannulas of our own (what are the odds?!).  And thanks to me having avoided caffeine for a week and drinking copious cups in my nervous excitement, I was twitching all the way home (and into the early hours).

All in all the day was a GREAT success and certainly something I am prepared to give up my precious Saturdays for.  If those 21 diabetics don't have success (which would surprise me considering InPuT will continue to support them through their applications and offer advice and guidance where we can), the pressure those newly motivated people will put on their diabetes teams will undoubtedly go some distance to changing the attitudes of the professionals and people holding onto all the power.

The power is ours.

Next up, we are coming to you, Chester!

And FYI Anna, find a photo pose which disguises chin-zilla!

The Advanced Technologies and Treatments for Diabetes conference 2012

The 7^th -10^th February 2012 saw the arrival of the international event known as the Advanced Technologies and Treatments for Diabetes (ATTD) conference, which I was lucky enough to be able to attend as a representative of INPUT and funding from Dexcom to assist INPUT in the work they do. The ATTD is a worldwide conference where research outcomes at the very forefront of technological advance are presented. Being only 5 years old it is still in its fledgling years, but growing noticeably each year. Although I was not at last year’s event, I am informed that there were around 1000 attendees. This year, there were 1600 and I’m sure there are many more who would have attended given half a chance. It is aimed at diabetic professionals (or professional diabetics, in my case) mainly being consultants, nurses and diabetes educators, although the odd advocacy service pop up here and there too!

Being an insulin pump user, a diabetes advocate and a bit of an inquisitive old lass, it is always of great interest to me to see where this diabetes technology beast is heading. We hear terms like ‘Artificial Pancreas’ and ‘non-invasive glucose monitoring’ thrown about on an almost daily basis now and yet many people in the diabetic community feel these are creatures of myth and seem to hold a ‘that’ll be the day’ attitude towards them. So to be involved in a conference where this research is being presented was an honour and frankly, somewhat of an eye-opening occasion for me. .

Clearly it would be impossible to go through each of the presentations, symposiums and workshops in detail. Not in the least because my less than scientific mind would never be able to recall all the details for you. But perhaps giving you an idea of the things that caught my eye would be of use.

One of the stands in the exhibition which I kept circling in a slightly cautious way, was that of C8 Medisensors. In case you haven't heard of them (I hadn't), they are bringing to market a non-invasive glucose monitor that uses Raman Spectroscopy technology which for those of you who don't speak 'medical journal', is effectively a light that shines through the skin and identifies how many glucose particles there are in the interstitial fluid. Phew, mouthful ay. Well, according to early tests they are showing promising results, although the last test only involved 6 people. I would need to see a significant higher amount before I would be convinced it would rival the likes of Dexcom 7+ and Medtronic Enlite. Now we all remember the success of previous non-invasive systems such as the Glucowatch, the remnants of which remains burned on the skin cells of countless diabetics who had the misfortune of using it. But this was impressive. In its current form it is a bit on the 'chunky' side, and is held around the midriff with a tight neoprene band. But for those parents out there who hate the feeling of piercing their children's skin with countless needles they have to face, I think this could be a contender. If, and only IF, they come good in clinical trials. Watch this space.

For quite some time I have been aware that in order to avoid post meal spikes I need to bolus 30 minutes before each meal, otherwise those spikes just creep in a couple of hours later. But we also know that each diabetic is different and we are told all the time to find our own way. So I was very interested in a lecture about bolus times in children using insulin pump therapy. In the results being demonstrated to the audience, the message was that 15 minutes was the optimum pre-meal bolus time to avoid those spikes. In addition to this the study, called “Fine Tuning of Insulin Pump Therapy in children with type 1 diabetes: The importance of bolus timing and type” demonstrated that making the most of dual wave boluses and separating correction boluses and meal boluses, would make all the difference. They found that with mediterranean food for example, boluses were split 70% straight away and 30% over 4 hours, while Pizza was 30% straight away and 70% over 6 hours. They also highlighted that the results of their study showed that when blousing for a meal, any correction bolus being included with the meal bolus, should be separated by 15 minutes, and that this would bring glucose down to normal via the fastest route. Fascinating stuff for me, someone who has always struggled to get my head about a dual waver

One of the key lectures for us to attend included INPUT’s very own Lesley Jordan taking to the stage. Lesley has been involved in a pioneering project to trial the Accu Chek Diaport, an intra-peritoneal (goes into the peritoneal cavity in the abdomen) infusion site which is permanently fixed (as long as the host wants it, that is). It is surgically implanted and regularly maintained and allows for insulin to be much faster acting (see number 3 on my list), removes the worry of hitting a bad site and means much better control. It may not be for everyone as it is surgically implanted but for those with site problems leading to frustration and poor control it provides a very useful tool in helping achieve control over their condition and maintain use of an insulin pump effectively. Lesley has been one of the Diaport 'guinea pigs' and thanks to feedback from her, the new and improved second generation is ready to launch.

There were also stands demonstrating the Omnipod, the Accu-Chek Combo, the Medtronic Veo and my particular favourite of the moment, the Cell-Novo. I had the chance to catch up with some old friends from Medtronic, meet new ones at Roche and Cell-Novo and had a chance to thank Dexcom for supporting INPUT and in a round about way, helped me attend such an inspiring event.