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Diabetes UK’s Big Event 2013

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Diabetes UK Big Event

The Big Event

The Big Event lived up to its name with people coming from all over the UK to listen to topics about diabetes for all types (1, 2, etc.) in a single location.
It’s an awareness day very similar to the JDRF awareness days (1 and 2), the DRWF Wellness Day and Hedgie Pricks Diabetes awareness day I’ve been to recently.
I’m not sure of the exact count but I’d guess there were 500 or 600 people there so it’s a pretty large gathering.
One key element of the day for me was to meet some of the wonderful people that I “talk” to through Social Media on a daily basis and for me it was a highlight of my day.

First, the location

The event was in Hammersmith, London, certainly not too far from me therefore easy to get to. Last year’s event was in Warwick so it’s good to Diabetes UK moving the event around each year to enable access for others.
Some people though are happy to travel long distances for events like this and I met people who’d come from Nottingham, Derby, Wales and Northern Ireland. Fair play to them.

Registration and first meets

Registration was so simple and within seconds we were into the main hall where I immediately spotted a twitter colleague Dave, or was it Dave? People rarely look like their online presence do they! We’d all joked the other day on Twitter that Dave should bring his Yorkie down to give to whoever spotted him first. I tapped him on the shoulder with a “do you have my Yorkie?”. And so started my series of meetups.
Ten minutes later another tweep Rachel came to say hi proving once again that my ‘tweet a picture of today’s t-shirt’ worked. I proudly waved my Yorkie as Rachel was in on the joke too.
Then we bumped into friends from our clinic, Steve and Becky, who we’d arranged to meet there. This was already turning out to be a great day, I almost forgot we had talks to attend.

Talks, talks and more talks

Diabetes UK had gathered many talented speakers to discuss various different topics, all organised into tracks, one for Type 1, one for Type 2, one for parents of Type 1 kids and a generic one. You could pick and choose which ones to attend, there was no booking list, just turn up to the right room at the right time. We naturally migrated to the parents/schools sessions.

Session 1: What care to expect for your child

Steve, Becky, Jane and I took our places before I spotted Joe, Diabetes UK’s social media person at the event. We’d spoken online before so I went over for a quick chat. Yet another face to a name ticked off.
The talk was given by Libby Dowling, Clinical Advisor for Diabetes UK. She told us about the different policies and tariffs and just what care we should be expecting. The four of us are all at the same clinic and generally we’re pleased with the care we receive but listening others talk about their lack of care we felt quite privileged.
Two blonde haired women spoke about their recently diagnosed son, I knew one must be Karen, but which one? Finally I sussed which and tweeted her “I’m on your right, two rows back.” Next person to meet identified 🙂
The discussions around the room got quite heated as the lack of care provoked emotions.Session 1 tweet

Coffee time, some more people to meet

Back in the hall for more coffee and I spotted Simon – who has blogged about The Big Event too – and Teresa and went over for a chat and before I knew it session two was just about to start. It was hard to think we’d not actually met before as it seemed like a meeting between old friends. They introduced me briefly to Laura and Angie, two more from the #DOC.

Session 2: Pumps and continuous monitoring: basic introduction

Although Amy has been on a pump for a few months we still felt it was worth attending this session and went along with Steve & Becky whose child is getting a pump quite soon.
The talk was hosted by Melissa from INPUTdiabetes and Claire, a Diabetes Specialist Nurse and also co-founder of TeamBloodGlucose, an organisation I’ve been following for a while. Both have Type 1 Diabetes and are strong advocates for insulin pumps.
Questions were asked of the audience: who had a pump?; who had CGM?; who loved their pump?; who didn’t? It didn’t really surprise me that people loved their pumps (however on re-reading my tweet I’m surprised I didn’t spell ‘surprise’ correctly!).
Everyone loves their pump
It was great to hear Claire and Melissa speak, they were a great double act and everyone wanted Claire’s diabetes awareness dog who stayed near her the whole time. Claire spoke about CGM sensors and forced Melissa to parade uneasily around the audience.
Whilst talking about advantages and disadvantages I felt they omitted many of the advantages and bigged up some disadvantages, but I understood that they were probably not wanting to come across as saying pumping is the best solution – there’s a lot of people on daily injections who would get annoyed by that.
With the fab presentation over it was question time and some good questions were asked. Someone then started going on about her bad pump experiences and had a go for them bigging up insulin pumps. What a load of rubbish, the pump advantages had clearly been downplayed. I’m sad she had such bad experiences but that doesn’t happen to everyone and I’m sadder that her rant may put people off. Unfortunately it didn’t sound like she was going to stop going on so pretty much the whole audience left.

Amy’s Infusion Set Masterclass

After we’d eaten lunch Karen and her son introduced me to Shaun from Twitter who’d driven a long way for today’s event, yet another meet up done.
Then it was time for Amy for change her pump’s insulin/cannula/tube and it seemed to make a lot of sense for her to do it in front of Becky, Karen and their boys, both of which are getting a pump soon.
Amy took them through the whole process of drawing the insulin into the cartridge, removing bubbles, fitting the cannula, priming the tube and priming the cannula. I was proud of her for not only doing this in front of people but with the ease she did it under pressure. Karen suggested Amy does a YouTube video of it so perhaps that’s something for the future.

Session 3: Pumps and gadgets advanced

This session was also hosted by Claire and Melissa from session 2 and delved deeper into the world of pumps/CGM. Anyone without a pump would have struggled, in fact it’s fair to say that many of us in the room (Jane, me, Teresa, Dave) got a bit lost at points.
Carbohydrate counting can be tricky enough but now we were being introduced to Super Bolus and FPUs and multi wave bolusing. Eek!
Super Bolus
We learned that whilst normal bolusing is fine for normal GI (glycaemic index) foods there was a better method for high GI foods, i.e. those which would cause the blood glucose levels to spike very quickly.
Come in Super Bolus to save the day.
Roughly you ‘borrow’ some of the forthcoming x hours basal insulin units and add them to the normal food+correction bolus amount, at the same time you put on a temporary basal rate of 0% (or minus 100% depending on your pump) for the x hours.
Scott Hanselman’s “Hacking Diabetes” article has a section about Super Bolus which is worth reading.
There’s also Super Bolus information on DiabetesNet.com.
FPUs (Fat Protein Units)
This was the one that left many in the audience scratching their heads.
The idea is that extra insulin is needed for meals high in fat/protein.
Roughly you work out the calories from the meal, then work out the calories from fat & protein. With a bit of jiggery and pokery you end up with an amount of units of insulin to cope with the fat & protein, which in turns gives you the time you need to delivery that insulin over.
I’ve struggled to find the calculations themselves but DiabetesUK offered to send them to people who were at The Big Event so I hope to receive them soon. Whether or not we start to use them or not only time will tell.

Session 4: Coping with diabetes at school

Whilst I headed off to this session Jane went to hear the talk about emotional issues surrounding living with Type 1 Diabetes. I’ve heard from many that that session was one of these best of the day.
My session was hosted by Libby Dowling who was assisted by a parent of two children with Type 1. I’d met the parent, Fiona, before at the DRWF Wellness Day back in June. It struck me back then how well educated about diabetes she was, something living with 2 kids with D for many years makes you I guess.
Libby spoke about many things to do with children at school, about things Diabetes UK knew about and where they were seeking to go next.
Fiona told her story by reading an abridged version of her personal diary. It was quite shocking to hear the problems she had gone through and the prejudice and lack of equality her daughter received at school.
Parents spoke about the problems they received, the issues their schools had put them through as I sat in silence grateful for the wonderful school our kids attend. We’ve had no issues that haven’t been immediately rectified once I’d pointed out the errors of their ways.
Unbeknown to me, Baroness Barbara Young, Diabetes UK’s Chief Executive was sitting in the audience and stood up to discuss their plans, dealings with organisations and the way forward. I was impressed she took the time to attend a session and ask us what we all thought.
The key discussion that everyone agreed with was that someone at each school must be made accountable for any issues surrounding Diabetes (and other similar issues). Furthermore things were unlikely to improve until checks about a school’s equality/inclusion were properly included as part of their Ofsted report.

Summary

I thought I knew a lot about diabetes but going to an event like this proves I don’t.
I learn something at every event and that’s why I will continue to go to every one I can.
This event was great, its sessions, its presenters, its organisation and its opportunity for networking.
I haven’t really mentioned the childcare where people looked after the kids in a separate room whilst the adults were in sessions. Amy had a great time, playing all the games, drawing and playing with other kids, many of whom had Type 1 too. She’s made a new D friend of her own age and they’ve already started talking to each other online, which is great as we all know how good it is to feel the same as others.
The days after the event and we’re all still talking about how much we enjoyed the event so thank you Diabetes UK for organising it.

Best part of the day: the amazing Diabetes Awareness Dog

Claire’s dog Magic stayed by her side all day and whilst giving a talk during session 3 he started making a fuss over her. She left the room with Magic.
Melissa carried on the talk and it was a while until Claire returned to carry on with her side of the presentation.
At the end of session it was question time and the first question was “Claire, when you went out what level were you?”
Claire told us that Magic is trained to recognise a level of 4.5mmol or less.
She was 4.3mmol.
Wow.
Just wow.

Amy’s school trip to Germany, 27 days after getting insulin pump

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27 days after getting her insulin pump Amy went on her first European school trip, a two night stay in Koln, Germany.

Too soon after getting the pump?

When our DSN (Diabetes Specialist Nurse) called to let us know Amy would get her pump on the 20th June I was elated, before seconds later I remembered about her school residential trip to Germany, which was only a few weeks after. The DSN didn’t seem too worried though as long there was a clear 3 weeks before the trip – there was. This meant that Amy had to go straight on insulin when getting the pump, rather than spend a week using saline which some clinics do to get people used to using their new pump. Our DSNs confidence made us confident.
Amy would need to do a set change during the trip so would 27 days be enough to get used to doing this? By herself? Without us?

Negative press = worrying parents. Would the school still let her go?

In the news recently there’d been so many instances of kids being refused residential trips at the last minute that I attended a Parents’ Clinic run by the school, deciding to tackling this straight on.
I went in armed with articles such as ‘Sheffield schoolgirl with diabetes barred from trip‘ and ‘Diabetic lad is barred from school trip of a lifetime‘.
Their initial reaction was amazement, that schools would refuse to take kids with diabetes. I took that as a good sign.
Their official response came back a couple of days later: they just wanted a letter from the DSN a few days before the trip to say that Amy was fit to travel. They also wanted us to come in and discuss care requirements with the person who the designated pastoral carer for the trip.

The School’s Pastoral Carer

We already had great respect for Mrs L – the person assigned as the trip’s pastoral carer – as she’d helped our eldest daughter with some issues on her trip three years ago, so we were glad to hear she was going on this trip.
Jane went to meet her the day before the trip with a list of things to do, which featured a key message: you should not need to do anything except make sure she’s okay; you don’t need to inject her; you don’t need to touch her pump.
I felt it was important – after the articles I’d seen elsewhere – that the school didn’t feel like it would be a chore taking Amy on a trip and I didn’t want Amy to think that she needed to rely on others to manage her diabetes, which in turn would hopefully give her confidence. In general this worked very well, a few issues aside.

Three weeks to get the basal profile sorted

The DSN wanted 3 weeks between getting the pump and the trip so that adjustments could be made to Amy’s basal profile to get it right.
In turned out that 3 weeks was enough to get the basal profile as close as possible and more importantly make us confident enough to make slight tweaks ourselves.

Wednesday 17th July, Day one

Waking up at Stupid O’Clock

The coach was leaving at 4am. which mean at 3:30am wake up call. It also meant there was no chance of doing a set change that early in the morning, so one was done the afternoon before, with another one to be done on either Thursday on Friday, by Amy.
We knew that Amy’s basal profile was pretty good so didn’t feel the need for her to test her blood glucose level at such an ungodly hour.
Arriving at the school, there was a mix of excitement from the kids and anxiousness from the parents. They felt like I did three years ago when I packed my eldest off on the same trip. I found it hard to appreciate their fears considering everything we were now worrying about: if it all went wrong it literally could be life or death.
Still, I made sure Amy had her mobile so she could text me her blood glucose check results and ask for advice if needed. It was a long wait.

Diabetes? Here? Nah!

A key thing any parent would want for their kid on a school trip is that diabetes doesn’t feature very highly so we told Amy to enjoy herself, get the most of the the trip but keep safe.
And she did.
Whilst she never texted me her results until a lot later in the day she clearly felt in control enough to not need to call me either, which was great, if not a little concerning for an incommunicado parent.
Later in the evening she sent her BG results through:

Amy's first day BG results

Thursday 18th July, Day two

Lindt and excercise

Today was the day which worried me most: it started off with a visit to the Lindt chocolate factory and also featured a lot of walking and a climb up Koln Cathedral’s 509 step spiral staircase.
We exchanged a few early morning texts one of which from Amy contained ‘is it okay if I have some chocolate at the Lindt factory?’. Bless her, as if I’d say no, knowing that she’d been looking forward to this specific visit for months. I looked up some nutritional values on Lindt’s informative web site and text Amy back carb values for stuff she likes. At Lindt she bolused three times in the space of the hour long visit, something she would never have done with injections so YAY for the pump, it meant she really enjoyed the visit.
The Koln Cathedral visit didn’t provide any problems either.

Infusion set change – without us

Amy had done all of the set changes herself, without us doing anything but with us watching and encouraging. Before the trip she wasn’t fazed about doing the set change and unsurprisingly she did it without issue, but under the close eye of the school’s Pastoral Carer.

Count the boluses

I’ve said before that Amy hated injections so wouldn’t often choose to snack anything over 15g carbs, and even then only once between meals. So the pump has given her the ability to do this but maybe, just maybe, 10 boluses in a day is a little too much. Well actually no, it isn’t, everyone else was snacking and now Amy’s pump meant she could too, without worrying about soaring or dropping levels.

Today’s blood glucose levels

7.8, 14.9, 4.6, 8.3, 4.1, 5.1, 3.5, 5.9.
We can discount the 14.9 pre-lunch test as it was 70 minutes after the first Lindt chocolate and 20 minutes after the last.
This means she only went a maximum of 0.5 out of range all day.
I’d call that winning.

Friday 19th July, Day three

A morning of stress induced highs

This morning she’d woken at 6.6mmol, another great result.
The trip had been going so well for Amy, she was having fun and her levels were pretty great all round. Diabetes itself wasn’t getting in her way at all.
That was until it was time to pack up and one of her room mates got all stroppy and pushed the other room mate into a wall, causing an untold amount of stress and emotion. I wasn’t surprised to hear about this event as I’ve never understood why Amy is friends with this girl, she’s always be horrid to Amy, so why share a room with her? The other girl has been one of Amy’s closest friends forever and one we very much trust to look out for Amy.
I was surprised how the stress affected Amy’s levels, shooting up to 15.5 which took a couple of corrections to shift over the next few hours.
By 1pm she was down to a respectable 5.4mmol.

Amy, do you really need Pizza for lunch?

The kids had to buy their own food on the last day, all opting for Pizza. I knew that a combo-bolus would be required but we don’t eat Pizza much at home and hadn’t experimented with combo -boluses for it. She wasn’t keen but I managed to convince Amy to do a four-hour bolus; I knew it needed to be longer but not when she’s by herself in Germany. We decided we’d run the risk of being higher later on…oh how that came back to bite us.

The case of the too-short-combo-bolus, the coach trip and the over-zealous teacher

Following Amy’s Pizza was the long coach journey back to England, sitting aimlessly on a coach for hours and hours. Combine this with the pizza and it’s easy to understand why Amy’s BG readings went up to 13.9.
What we didn’t expect though was the lovely Pastoral Carer going a bit overboard. She got Amy to test for ketones and even though it was very low she got her to test again minutes later. Then another blood test, then another, then another.
She did 9 blood glucose tests within 3 hours and a few ketones tests too!
Clearly this was down to us not clearly communicating what Amy needed to do if high; we’d concentrated on the lows, not the highs. We’d spoken about ketone testing but somewhere the hypo-15-minute-rule and ketone testing rule got mixed up. For the record, I’d rather had an over-zealous teacher than one who didn’t care or check on Amy.
It clearly threw Amy off balance and made her panic a little, which in turn probably raised her levels higher. Since, we’ve had a chat about why she went high which has renewed her confidence in her management of her diabetes.

In short…

Friendship incidents aside, pizza bolusing aside, everything went perfectly for Amy. Diabetes never got in her way, or stopped her from doing anything, she did everything her friends did.

Hedgie Pricks Diabetes “Greater Minds Inspire” event – 6th July 2013

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Aiming to inspire

Hedgie Pricks Diabetes (HPD) was set up by Zoe Scott with the aim to promote greater awareness of the psychological, emotional and social issues faced by any person with diabetes (PWD). As a father I’m especially concerned about these issues affecting my daughter, who’ll enter her teenage years in a few months, and am quite worried about the number of stories I hear of teenage PWDs who “go off the rails”, who fail to realise the consequences of their lack of diabetes care now and how it may affect things like their eyesight in a very short space of time.
I want Amy to be proactive about her diabetes and to realise that she can achieve great things, regardless of diabetes and that if she puts in the time managing it she’ll reap the benefits later. In short I wanted her to be inspired and that, in a nutshell, is why we signed up for the Greater Minds Inspire event.

Introduction from Zoe Scott

Zoe welcomed us all to event, thanked us for coming and spoke a little about Hedgie Pricks Diabetes and today’s event and the speakers who we’d see later.
Zoe and I have followed each other on Twitter for about a year now and I’ve followed her progress, through winning last year’s QiC People’s Award and setting up this event. It’s difficult to remember that she’s only 22 when you look at what she’s already achieved and especially how calm she was presenting to us at this event; I couldn’t do that and I’m double her age.

Video from Team Novo Nordisk

Zoe introduced a special video from Phil Sutherland, who created Team Type 1, which was later rebranded to Team Novo Nordisk. This team contains teams of cyclists, runners and triathletes who are competing at the highest level, whilst all having Type 1 Diabetes. The cycling team is so good it’s expecting to be able to enter the Tour de France very soon.
Whilst competing in races and tours the team also promote diabetes under the banner ‘Changing Diabetes’ and help the PWDs in places they visit, such as their recent donation of 400 blood glucose meters and 35000 test strips to people in Rwanda.

Flying with Type 1 Diabetes – Douglas Cairns

Douglas spoke about being a pilot before a diagnosis which which effectively ended his flying career, or so he thought. After trying out other careers he set about trying to fly again, gaining his license to fly privately in other countries, such as Thailand and USA. He then embarked on some major flights in his private plane: flying around the world and a flight to the North Pole. His talk was very well received, the kids seemed captivated and on seeing what he’d done Amy whispered “wow” to me a few times.

Kitesurfing – Pete Shaw

I was very keen to listen to Pete Shaw talk. I’ve loved surfing (badly) for years and whilst kiteboarding seems out of my reach due to fitness, it’s great to watch. Pete started his talk with some photos of people kiteboarding, racing on top of the waves, jumping waves and getting some air; I glanced at Amy with her jaw dropped and she turned to me and said “I want to do that”.
Pete explained that having Type 1 didn’t hold him back, he just had to plan a little more and he spoke well about the safety bits he does to make sure he can enjoy the sport and stay safe. He mentioned that people with Type 1 Diabetes could do anything; kitesurfing, rock climbing, base jumping.
“Base jumping” said Amy “what’s that”.
“Amy, he’s got that wrong” I smiled “you definitely can’t do that” said the worried parent. (I explained later that of course she could do it but after seeing some videos she decided not to pursue that idea.)
His key message was that the kids in the audience could do some really great extreme sports, with just a bit of planning ahead. As a parent I was pleased to hear this.
In the lunch break Pete let us all have a go on his Indo board which was great fun, if not incredibly difficult. Amy was a natural at it.

Climbing Mount Kilimanjaro – Dilan Shah

Dilan Shah was manning the JDRF stand during the day but was also a speaker. He spoke about how he had a lack of control of his diabetes and how he wasn’t sporty at all. Until that is the idea of running the London Marathon gripped his imagination and something he completed in 2007, albeit in a slower time than he’d hoped for. He returned in 2009 to complete it again, this time in an impressive 4 hours 30 minutes.
In October 2011 he climbed Mt Kilimanjaro in Tanzania, raising money for JDRF on the way. He spoke about his training, his expectations of insulin management from the advice he’d been given and the reality of walking up a mountain for up to 16 hours in one of the days. 16 hours!
He ended his talk stating that he believed that Type 1 Diabetes would not stop him accomplishing his dreams, reinforcing a common message running through the day so far.

From Coach Potato to Ironman Triathlete and Channel Swimmer – Claire Duncan

As the title eluded to Claire never grew up with dreams of being an triathlete or channel swimmer, instead focusing on a music background. She spoke about how she found that she liked running and swimming, entered some sprint triathlons and ended up completing an Ironman 140.6 triathlon. That’s an amazing achievement in my eyes and I could see that Amy was impressed: she knows how hard it is to cycle 27 miles, let alone a 112 mile cycle ride, sandwiched between a 2.4 mile swim and a 26.2 mile run.
She spoke about swimming the English Channel, how freezing cold it was and the weird sensation that a jellyfish sting gave her as it warmed her up as its poison worked its magic!
Claire gave out the message that there will always be some sport or fitness that you will enjoy, you just need to find it; that you don’t need to be the fastest, the longest, the best, it’s okay to do it in your own time. By doing this Claire has completed marathons and the hardest triathlon in the world.

Running from John O’Groats to Land’s End

Next up was Gavin Griffiths to talk about his recent challenge where he ran from John O’Groats to Land’s End covering 30 miles a day for 30 days. Many of you will know that I got involved for the last four days and Amy and Jane cycled for one day.
Gavin spoke about his challenge and showed photos from some of the days, telling us stories of how people he hadn’t even met before pulled him through the challenge, offering lifts, beds, meals and support.
A big part of Gav’s challenge was to inspire type 1 kids and as he reeled off the names of a few – Beth, Angel, Danny, Tom, Alfie, Mimi, Amy – it was clear that he had achieved that goal. More exciting for my family was when he started to speak about the last week of the challenge as he spoke about the great involvement from my friends: Chris and his son Alfie (pictured top) who ran into Bristol with Gav; Annabel and Jeff for driving/running for two whole days with their type 1 daughter Mimi running with Gav into Taunton. Gav then praised us (pictured bottom) for our support and mentioned what a great effort Amy had made on the penultimate day.
Take a look at some videos of the kids who took part in Gav’s challenge.

A wall of emotions

There was a set of boards at the event where the kids could write down their feelings about diabetes, the bad bits, the sad bits, the good bits and their inspiration. Many kids had written their feelings for all to see and I know that everything Amy feels was represented on the boards. Hopefully some of kids realised that they’re not alone in the way they feel by reading the thoughts of others.
Here’s just a few of the things that were written:







Finally…I had a feeling I knew who’d written this one

I was happy to read this, it was half the point of getting involved with Gavin’s GBR30/30 Challenge in May, and getting Amy cycling for the day and running with Gav’s Olympic Torch.

In summary

It was over a 5 hour round trip for us to attend this event but I’m so glad we did. Events like this don’t come up often – or in this case ever before – so it’s worth going the extra mile (literally) to support them.
I know Zoe had hoped that more people had attended this event but I’ve seen less people at events organised by the big charities. The event was very well put together and Zoe should be applauded for achieving this.
Each and every speaker was superb and whilst they all had their stories to tell they all shared a common message: your diabetes need not stop you doing great things.
Amy left the day inspired.
Right, must go, apparently I’ve got to look into Kitesurfing lessons for kids!

Alton Towers tweetup – 29th June 2013

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Alton Towers

Day two at Alton Towers

Our first day at Alton Towers was a great success, albeit slightly damp from the rain. Today was going to be different on many ways: it was sunny; it was the weekend, so queues would be longer; we were meeting other people from the #DOC.
Us Winchcombes were in a bit of a rush to meet Derek’s family, forcing us to have a speedy breakfast all in a fluster and running out of the room to meet them in time.

Guest Services: to wait or not to wait

Pulling into the car park there were cars everywhere, far more than the day before…and to think we thought we were early. It took ages to get to the park entrance and by the time the we reached Guest Services there was a queue of 20 or 30 people there.
Although the Guest Services queue was long we knew that time spent here, getting the ‘special access’ pass for the people with diabetes, would be time well spent, minimising queueing time at all the rides.
Philippa and James met us in the queue and we chatted like we were old friends, not like people who had never met each other outside of Twitter before. Philippa also has Type 1 Diabetes and needed to get herself a ‘special access’ wristband.
Derek and I had been tweeting with Vanessa-Louise who was running behind time so we said we’d meet for lunch time, or sometime afterwards.

Straight to The Smiler

We headed straight to The Smiler, with the kids running, but kid-like James failed to appreciate an uneven path and tumbled head-over-heels denting more than just his pride. Philippa took him to get fixed up whilst we queued for The Smiler. It was only my family which went in, Derek’s stayed behind and unfortunately it took us ages to get through. However this “ages” was only 40 minutes and the real queue was already 2hrs long. Luckily our Smiler ride was brilliant and the ride worked well; more on this later.
By the time we met up with Derek’s family they’d managed to ride Obvlivion twice using Chloe’s special access pass.

Rides before lunch

Some of us went into Hex before we headed off to Thirteen, where the main queues were getting big already, but luckily our fast passes got us on in no time. We all loved this ride, it’s kinda cool.
It was great to chat with Philippa and James, so nice to put faces to names and they’re such a lovely couple.

Lunch time and the much-awaited BG test

We had lunch over in the Forbidden Valley (where Air and Nemesis are) with all 11 of us sat around a table.
Amy did her blood test and was 16mmol. SIXTEEN! This was her highest lunch time result on a pump and we had no idea why. We felt embarrassed as her new insulin pump was meant to stop things like this happening.
The mystery was solved a week later when I found out by looking at her pump’s data (on Diasend) that she never took any insulin to cover breakfast time.

Forbidden Valley

tweet, going on Air

Forbidden Valley has got to be one of the better areas of Alton Towers, with Nemesis and Air which we all really liked. After doing Air again we met up with Vanessa-Louise and partner who told us the The Smiler had got stuck, with 16 people stuck at the top of the vertical incline. Rumours were about that they were there for 30 minutes, luckily facing up not down, and I felt my desire to ride this coaster again disappear.
The Smiler - stuck - again

A rather wet Log Flume

Off to the Log Flume and the 11 of us were split across three ‘logs’ – which actually turned out to be shaped like baths, which was more apt than we knew at that point. The ride was really long and there were ample opportunities to get soaked, as Derek found out to his cost. Watch the video to see it, at about 2 minutes 56 seconds in.

A soaked Derek and me

httpv://www.youtube.com/watch?v=bOa4avl13iY

Sonic Spinball

The kids really wanted to go on Sonic Spinball which they’d not been on before so off went Chloe, Amy, Charlotte and Martin.
httpv://www.youtube.com/watch?v=FvYECfslVj4

The SmilerGate incident

Stuck on the Smiler

For the last ride we all did The Smiler, something I was a little worried about after it getting stuck during the day; but that couldn’t happen twice in a day right? Wrong!
Derek, Philippa and James went first; then Chloe, Clare, Charlotte and Martin; then my lot. The queue seemed to take forever but we knew that some people had been in the queue for 3 hours so we could hardly complain about 30-45 minutes.
Whilst waiting in the final boarding zone the ride broke down. It didn’t take Amy long to realise that Chloe was on the ride and broke into tears worried that she might be stuck up the top, without any dextrose or blood glucose meter. Eventually the ride got going again and Chloe etc returned looking not too shaken.
The ride was tested again and again and again before they were happy for people to go back on it.
Then it was our turn. It couldn’t break down a third time could it? Wrong!
Going up the first 45 degree incline and the ride stopped again.
This time Emilia got upset, worried that even if it got going again we’d get stuck at the 100% vertical lift.
After 10 minutes the ride got going and we were happy to get off.
Amy did a blood test, she’d shot up to 17mmol. No surprise there!

A brilliant couple of days

SmilerGate aside it had been a brilliant couple of days. We’d all had a lovely time and enjoyed our tweetup.
More over all the people with diabetes felt great about their special access passes and the benefits they brought.

Alton Towers tweetup – 28th June 2013

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Alton Towers

It’s teacher training day

For the first time in years both my kids were in the same school this year and we’d promised that we’d take them to Alton Towers on the first summer-ish teacher training day. So way back in November I booked up a hotel nearby for a couple of nights. I say hotel, it’s a Travelodge, which many of you will baulk at but it was clean, had a bed as was £20 per night for a family of four.

Talking about a tweetup

In December or January some #DOC (diabetes online community) people on Twitter were talking about meeting up somewhere like Alton Towers, perfect for me, as long as they wanted to meet up on the 28th or 29th June. I mentioned that I would already be there and a few people said they’d try to come too, with Derek and his family (Clare and Chloe) committing themselves and booking up the same hotel for the same two nights.
Many people started saying they would come and I got a little worried about how doing all the rollercoasters would work, but eventually our tweetup group dwindled to what became a perfect number for hanging out together. I would have preferred to have met more people but it could have meant we got to do a lot less rides.
In the end my family and Derek’s family were there for two days and we were joined by Philippa/James for the whole of Saturday, and met Vanessa-Louise and partner briefly on Saturday too. The next article talks about 29th June 2013 when Philippa and Vanessa-Louise were there too.

tweet, off to Alton Towers

Friday 28th June starts with a long drive

Both Derek and I had circa 3 hour drives to get to Alton Towers but we arrived within minutes of each other.
Derek’s daughter Chloe has Type 1 Diabetes as does my daughter Amy and they’d been texting each other during the journeys so they were very pleased to see each other again. Chloe’s cousins Charlotte and Martin had come along too to enjoy Alton Towers with us.
Once there we headed straight to Guest Services to arrange the ‘special access’ wristbands that Derek’s daughter Chloe and my daughter Amy were eligible for, both having type 1 diabetes. Here’s more information about Alton Towers’s special access wristbands and fast tracking rides.

tweet, at the front of the smiler

The Smiler: it’s time to be corrected

The Smiler is Alton Towers’s newest and biggest ride, with a world-first 14 inversions. It’s mad, it’s really made. Here’s a video of it.
We entered the disabled queue, which seemed odd, but as by that time the main queue was 120 minutes long we were happy to gain quick access to the ride, “just keep your head down, don’t look them in the eyes” 🙂
My family went first, Derek’s behind and after only 10 minutes or so we were waiting to board The Smiler.
Strictly speaking we were meant to be in the back row on the 4 row coaster as that’s where people with ‘special access’ wristbands are meant to sit, but I didn’t know it, so pleaded with the attendant to let us on the front. He agreed.
So our first ride of the day was Alton Towers’s biggest ride and we were at the front.
Wow.
OMG.
Awesome.

Rides, lunch, more rides

The special wristband enabled us to do so many rides: before lunch we’d managed to do The Smiler, Oblivion, Submission, Rita (twice) and some smaller rides, all within two hours which was the length of the normal queue for The Smiler. Amy needed to disconnect her pump for many of the rides, which is advised due to the G forces on the big rides and ridiculously strong magnets employed by them.

Baited breath for the lunchtime BG result

Lunchtime came and we waited with baited breath to see what Amy’s blood glucose level would: 6.5 phew!
Talking about BG levels Amy’s were good for the whole day: 5.0, 6.5, 7.2, 3.6, 13.7, 7.2. Only the 13.7 was massively out of range and that was because she’d had too big a hypo-cure 30 minutes before, easily done. I’d call those figures a win.

Ride after ride

After lunch we rode, Thirteen, Air (twice), Nemesis, Blade and finally the Congo River Rapids.
I think there was no doubt that The Smiler and Air were the two best loved rides for the group.
It was interesting for me as I’d done Air four years ago, paying to fast-pass it but still waiting 45 minutes to ride it at the front; I didn’t think much of it, but today I loved it. Top tip: it is not worth riding Air at the front as you’re looking down most of the time.
But that time we were already soaked from the light rain, it was a good job considering what happened next on the Congo River Rapids ride; take a look.
httpv://www.youtube.com/watch?v=Xf-y81Gz1oU

Diabetes and fast tracking rides at theme parks…and free tickets

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Colossus at Thorpe Park
c/o Wikimedia Commons

Did you know…

…that someone with Type 1 Diabetes can avoid queueing for ages at some theme parks?

Fast tracking rides at Alton Towers

A couple of days ago I blogged about how to get a ‘special access’ ride pass at Alton Towers for people with Type 1 Diabetes.
That article has quite simply broken all records with regards to views, it’s been so popular, so it’s obviously a subject dear to many peoples hearts.

That’s fine but I want to go to a different theme park

From responses to that blog and elsewhere I’ve decided to write another article to include some other theme parks.
I’ll list a few of the other theme parks people have mentioned, here in this article.
Please note that I’ve not tried these myself (yet!) so please just this information as a pointer and check out the park’s own web site for the current situation.
If you feel any of the information is wrong or if you know of any other theme parks let me know too.

But first…FREE TICKETS…(for kids)!

Merlin, who own several UK theme parks (Thorpe Park, Alton Towers, Chessington), has set up the Merlin’s Magic Wand charity to put “the magic back into the childhoods of seriously ill, disabled and disadvantaged children”.
In simple terms you apply for tickets and if you’re lucky you get some.
This is a great idea but to be honest I’ll never apply as I’d prefer all available tickets to be used by people from families who can’t afford to take their kids to theme parks occasionally. I can, so we won’t apply.
Offical web site: http://www.merlinsmagicwand.org

Alton Towers, Staffordshire, England

It’s all detailed here but in summary:
Name of offer: Special access ride pass
Number of people: eligible person + 3 carers – although you can get away with at least one more
Offical web site: Alton Towers

Chessington World of Adventures

I would presume that being owned by Merlin (as is Alton Towers) that Chessington’s ride access pass would be similar but details seem sketchy and I’ve not heard of anyone trying it.
It seems though that cheaper entry tickets may be able to be obtained you will pay the full rate for your Park entry ticket; also one helper will be admitted free of charge and one at a concessionary rate, providing the second is required to assist you on to specific rides and attractions.
However they state that you must apply online, at least 24 hours before visiting the park and take photographic identification too when they visit.
Name of offer: Ride access pass
Number of people: (seems to be) eligible person and 1 carer (for people with type 1 diabetes)
Official web site: http://www.chessington.com/

Legoland Windsor Resort, Berkshire, England

Someone told me that they did something similar at Legoland a couple of weeks ago saying “it really made a difference to our day”.
I presume that this was using Legoland’s ‘Ride Access Pass‘ which allows an eligible person and three others to avoid queues for up to 10 rides during their visit.
Name of offer: Ride Access Pass
Number of people: eligible person and three carers.
Official web site http://www.legoland.co.uk/

Thorpe Park, Surrey, England

Thorpe Park is also owned by Merlin yet their offer is not as good, only allowing 1 helper, not 3. This must make it pretty tricky for families with just one parent as the helper has to be 14 or over.
Name of offer: Ride access pass
Number of people: eligible person and 1 helper
Official web site: http://www.thorpepark.com/

..and further afield…

Disneyworld, Florida

Angela from Texas let me know that her daughter went to Florida on a school trip and managed to get a fast pass.
Here’s what she wrote:
Re Disney, my eldest has just been to Florida on her school trip. I emailed prior to her going, gave the booking details etc and got a reply from customer relations which I printed off and gave to her.
On her first day, inside the first park she went to the customer service/assistance desk and showed them her pump. They gave her a customer assistance card with her name on + 3 others. This card could be used in any of the theme parks at Disney.
It didn’t put her right at the front, but it let her use the ‘assistance required access, which was a quarter of the waiting time..she regularly passed teachers and school mates standing in the long queues!!
Importantly she also added:
diabetes is quickly being removed as a reason for these passes, as they do not consider it a reason good enough. The best way to go is to mention that you are insulin dependent, and as such find if difficult to stand in queues without food etc which may result in a possible seizures.. Seizure is a good word that they don’t like!

Diabetes and fast tracking rides at Alton Towers

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Alton Towers

Did you know…

…that someone with Type 1 Diabetes can avoid queueing for ages?
Until recently I didn’t but some people in the Twitter #DOC (diabetes online community) made me aware of it and (after having just returned from two days at the theme park) I’m really glad they did.

In general how does it work?

Once in the park you get a ‘special access’ wrist band which enables the person with Type 1 diabetes and three carers to use the disabled entrance to the ride, avoiding queueing in the normal ride queue.
In essence this means that queueing times is dramatically reduced, meaning you can get to go on more rides. You have to wait a certain amount of time between each ride so that you just can’t keep going on ride after ride.
Note that whilst it only allows 3 carers, on our first ride of The Smiler we had 9 of us ride with just two ‘special access’ passes. I guess some ride operators are lenient, others maybe not.

STOP PRESS – 22 July 2014: there’s quite a lot of reports within the last two weeks that only people with insulin pumps are getting a pass, which in itself seem ludicrous as they’ve got the ability to turn their basal down whilst queueing.

Getting over the guilt

These ‘special access’ passes aren’t only available to people with Type 1, they’re available to people who suffer many different issues.
At first the idea of using a pass like this seemed odd, like we were cheating the system, after all we don’t normally think of our Type 1 child as disabled.
For the first few rides I felt guilty, walking ably down the disabled ramp and getting on a ride in front of people who’d queued for ages.
But I thought about it and realised that for 2.5 years now we’ve ate, slept and breathed diabetes, worrying about hypos and hypers and hospital visits and preventing incredibly horrible future complications.
It’s about time then we got something out of this diabetes, and this ‘special access’ pass was it.
Guilt over.

Getting your wristband/card at Guest Services

Once you’ve bought your tickets and are within the park head straight to the Guest Services building, which is on the right just after you’ve gone down the steps.
In there let the staff view a letter from the hospital which mentions about the kid/adult having Type 1 Diabetes and they will put a ‘special access’ band around that person’s wrist. They will also give you a ride time card.
Note that one of our party didn’t have a letter but was wearing an insulin pump and she managed to get to a pass too.

Getting on a ride

Use the disable entrance. Do not go in at the Fastrack entrance, this is for people who’ve paid a premium to get on rides quickly and this entrance is not for ‘special access’ riders.
Each ride has a disabled entrance, which are often the same place riders exit from. Note that some rides has a ‘disabled’ entrance and a ‘wheelchair’ entrance so use the ‘disabled’ one if you can, or the ‘wheelchair’ one if not. Mostly though, they’re the same entrance and they’re usually easy to find. An exception to this though is Oblivion where you have to go in through the shop.
Once you reach the front of the disabled queue the ride operator will ask to see your ride time card and will write a new time in the next free box. Often this time will be one hour from the current time, although on several occasions it was only 30 minutes. After riding the current ride you will not be able to use this ‘special access’ method again until the card time has been reached.
The ride operator will get you on one of the next available rides.

Only one at a time

Presumably for safety reasons only one ‘special access’ riders is allowed on a ride at a time, so if you go with a group of you as we did, you will not be able to all ride at the same time.
This seemed like a small price to pay for the benefits you got.

Wait…and do it again

Once your ride card time has been reached you just go and do a different ride, or the same ride if you wish.
On Friday we managed to do The Smiler, Oblivion, Thirteen, Nemesis, Rita (twice), Air (twice), Blade, Submision, Congo River Rapids, Hex, Runaway Mine Train and some smaller stuff too. That’s a lot in one day and wouldn’t have been possible without using the ‘special access’ pass.

 
If you’re interested about whether this is available at other theme parks read this article: Fast tracking rides at theme parks for PWDs…and free tickets

UPDATE: 3rd July 2013
Amy’s pretty switched on and cleverly announced to her friends yesterday ‘if you’re going to a theme park soon you might want to take me’. What a good idea. 🙂

DRWF Wellness Day South – 22nd June 2013

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DRWF logoDiabetes Research & Wellness Foundation

Going, then not going, then going again

I had originally planned to go to this event, but then something else turned up, I got sidetracked and never put it in my diary.
If I’m honest the photos of the previous year’s event didn’t inspire me that this event would have much relevance for Type 1 diabetes. I’d like to state now that I couldn’t have been more wrong, and some parts probably had a lot more relevance to Type 1 than the majority of the audience who (I’m guessing) had Type 2.

Helping another person with diabetes

For all the diabetes events I go to I do it for someone else, my daughter Amy who has Type 1 Diabetes. This time however I was going for someone different, my dad Roy who has had Type 2 Diabetes for many years.
My Dad seemed to know very little about his condition but to be honest he didn’t need to as my lovely step-mum Liz managed his diabetes, making sure he ate the right things and took his tablet medication. My Dad didn’t really even know what his last hbA1c was – which shocked me – and it as at that point I start talking to him regularly about diabetes. I should have done this some time ago.
So a few weeks ago I convinced my Dad and Liz to go to this DRWF event and freed up my diary to go with them, something my Dad wanted.

On my way

Just before leaving I tweeted (like I do 🙂 )

drwf tweet

I love it when social media officers in charities/companies/etc embrace a sense of humour.

Welcome to the family

Arriving at the event earlier than my Dad, I bumped into Helen (who I’d met at the last JDRF event) and had a chat before being tapped on the shoulder and turning around to meet DRWF’s Claire who’d been tweeting with me earlier; I’d not met Clare before but we had a good chat as if we were old friends, that’s what happens at diabetes events, one big family.
Later I caught sight of DRWF’s CEO Sarah Bone who said “Ah, Mr Oceantragic” or something like that. It’s really nice to be recognised at these events, especially by those who must meet so many people in their role.
It feels like being a part of a big family, meeting your distant cousins at some celebration.

The day starts

After a few words from Sarah, then Lee (the event organiser) spoke for a while before the first speaker came on.

The Diabetes Checklist, Dr Mayank Patel

Dr Mayank Patel is a Diabetes Consultant Physician at the General Hospital in Southampton. I didn’t recognise the name but I should have, I follow him on Twitter, but in my defence he doesn’t tweet much.
He spoke about the checklist of diabetes care that everyone should be getting, expecting, demanding. He asked who had heard of the 15 item checklist and I raised my hand, along with very few others; I was quite surprised.
I found myself nodding with many things Dr Patel said and enjoying every minute of his talk.
I could see that my Dad had learned a fair bit in this talk and I was pleased.

Diabetes behind the wheel, Dr Patrick Sharp

Dr Patrick Sharp is a Diabetes Consultant Physician for the Solent NHS Trust. (I’d better check whether I’m following him on Twitter 🙂 ).
He went through the current state of play with driving in you’ve been diagnosed with diabetes; stating the current law and importantly why it’s changed recently.
I liked the way he spoke about the sense/logic behind the DVLA’s current rules and medically the reason for the rules.
Importantly he explained the ‘assisted hypos’ which seems to cause confusion no end, explaining that an assisted hypo is not when you ask your spouse/parent/partner to get you your Dextro tablets, it’s when you need help from a healthcare professional or similar.

Meet The Experts

The hour long coffee break was also the Meet The Experts time where we could go around the stalls. I headed straight to INPUT Diabetes, met Lesley and had a good chat.
I went round all the stands by myself, bumping occasionally into my Dad and pleased to see him getting so involved and interested.
I wanted to also see the Menarini Diagnostics stand and chat with them about their Glucomen meter, which we’ve got two off. I’d called their support desk last week to discuss a potential faulty meter and they were great, so I wanted to pass on my thanks. I found the stand but it looked odd, only showing their GlucoRx meter. Turned out it was a different company (GlucoRx – I only found out after saying ‘are you Glucomen?’. Oops. I was quite impressed with the design of their GlucoRx Nexus Mini and the practicality of the brand new GlucoRx Nexus Voice speaking glucose meter.
Apart from INPUT one of the better chats I had was with a dietician talking but it didn’t start well. I saw the stand and spotted their Eatwell plate, then I saw a slightly different version, it was the Eatwell plate for the Asian community so I picked up a leaflet. The dietician looked at me strangely and offered me the normal leaflet which I declined.
“No thanks the Asian one will do me fine”
“We have it in Bengali too”
(Alright love, I’ll do the jokes around here thanks)
I then kept her busy with questions and questions about low-carbing, low-GI, deducting fibre grammes whilst carb counting and my favourite carb-counting topic of when to count, or not, a portion of 5g veg. (Don’t get me started, I’ll be here all week!!)

Pilates with Priya

Priya Tew is a level 3 pilates instructor and honestly I had no interest in watching her demo. Not for me right, I’m a bloke, I play football, squash and go surfing (although all quite badly to be fair).
But watch it I did and how glad am I that I stated.
Priya gave a few demos although being at the back I could barely see, and she explained why pilates could be good for some of the people in the audience.
Then came the eye-opener for me: “Pilates is good for those with a frozen shoulder”.
Hold on, I’ve got one of them, I’ve had it 3 years!. Whilst it’s no longer painful my arm movement is quite restricted. I listened more eagerly to the rest of the demo.
Afterwards I spoke with Priya and discussed a way forward for me, how pilates could really help. I’ve got her details and I hope I do actually book a session with her soon.

Lunch and meeting the experts again

After a very enjoyable lunch it was time to meet the experts again and I had a nice chat with Dr Patel, speaking about hbA1c checks and things like that. I’d briefly chatted with him earlier, finding out he trained with Dr Partha Kar and what a great Dr/guy he is. I tweeted Dr Kar who’d replied and said Dr Patel was in fact the legend. I found it so nice to see the mutual respect they had for each other.

Pick your stream

After lunch there were 3 streams to choose from: Increase Your Wellbeing; Looking After Your Eyes; Speed Dating for Type 1s.
I sent my Dad into the wellbeing stream whilst I attended the Type 1 stream, along with Helen from earlier and her friend.
In my stream were two Diabetes Specialist Nurses from Southampton. We had a good chat, especially about their lack of pump service and what they’re trying to do to get one.

Q&A

The afternoon ended with a question and answer session with three people; Dr Mayank Patel; Jan Mitchell and Sarah Woodman.
I’d passed Sarah in the corridor and she smiled at me, I thought I knew her from somewhere but didn’t know where until I saw her on the stage. I’d met her a couple of weeks back at a DiabetesUK stand in a nearby supermarket. She’d promised to email me something, I never received it, I wondered if this could be a question I could put to her as part of the Q&A.
Okay, maybe not.

It’s all over

What a great day.
I’d learnt so much, networked so much and drank so much coffee. I’d met some wonderful people, many of which I’m sure to bump into again at future events.
More importantly my Dad had learned loads and picked up an Accu-chek Aviva meter which he intends to use to start monitoring his glucose levels, something he hasn’t done much in years. It was worth me going just to see this.

Thanks

I’d like to thank DRWF for putting this event on and the other great work they do.
Thanks.

Gav’s GBR30/30 Challenge – the final day

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Gav's GBR30/30 ChallengeGav’s GBR30/30 Challenge poster

This article is about my involvement with Gav’s challenge, where I cycled next to him during the last four days of his challenge, whilst he ran 30 miles or more each day for JDRF and DiabetesUK.
If you’re expecting to find out about how Gav got on with his diabetes or running you’re going to be disappointed, you’ll have to wait and buy the book or attend one of his talks. Sorry but his tale is his to tell, not mine.

Donation, donation, donation

If you’d like to donate to Gav’s GBR30/30 Challenge fundraising pot please click this: http://bit.ly/gbr3030donate

Sunday, 26th May 2013 – St Agnes to Land’s End

Today’s route was going to be a tough one, at least 35 miles and having a 500ft hill towards the end.
Early on whilst planning this route I tried to convince Gav to start from somewhere further south, maybe Portreath or the Hell’s Mouth Cafe, so as to shorten the distance and make it easier on himself. Gav was having none of my advice and replied to one email with “If I’ve made it that far on the GBR30/30 then nothing will stop me, I will conquer any hills and any distance”…or something like that.
I felt for Matthew (Wood), Gav’s friend who ran with him on day one of the challenge starting at John O’ Groats; I don’t think he knew anything about this; I wasn’t sure how he’d feel about this. I knew Matthew had completed marathons but 35 milers, up big hills. I decided my best policy was to keep quiet about the route as Matthew followed me on Twitter.
Personally, I was never going to start from St Agnes as I was camping down near Leedstown, near Hayle, so I’d always planned to start from me, which meant I’d accompany Gav and Matthew for the last 20 miles.

Gav’s (planned) route, my route and elevation

Gav’s planned route was as follows – I say planned route as Gav decided that he hadn’t seen enough of Great Britain on his travels and decided to take a wrong turn, turning this planned 35 mile day into 40 miles!. I joined them at Hayle, roughly where the green triangle is shown:
GBR30/30 Challenge, Day 30, route map

Feeling guilty, getting nervous

Waking up to a glorious sunny day at the campsite my family and I chilled out around the pool, before I headed of to meet Gav and Mat shortly after lunch. In a way I felt a little guilty about this but in honestly laying by the pool felt great. After doing over 80 miles on my bike so far I, or more to the point my bottom, was glad of the break.
I was starting to feel nervous, a strange feeling that I’d not had on any of the previous days. I knew why: I’m no cyclist or athlete and I really didn’t want to muck up Gav’s big day by being too slow etc.. It was stupid really, I knew it was but I couldn’t do anything about it.

The “Where’s Gav?” Game

Jane drove me and my bike to the meeting point as we’d had no word from Gav. This was no surprise once we found out he was lost. Jane drove me up country lane after country lane trying to find the missing runners but we never did find them, so we went back to the meet point and eventually Gav and Matthew turned up, looking pretty fresh considering they’d already run about 20 miles.

Off we, erm I, go

Setting off from Hayle I felt supremely confident about the route: I didn’t really need a map; I consider this part of Cornwall as like a second home having spent so much time around these parts.
Along the Hayle estuary, onto the A30, off to Penzance, up the hill past Drift and then Land’s End. It couldn’t have been simpler I thought, forgetting that these guys who had already run 20 miles still had 20 to go. I was on a bike and much of it was downhill, so on came the (slight) guilt again.
Whilst much of it was on the A30 the route was generally beautiful, with Kites and Buzzards flying around us, sea alternating from this side to that and back again.

A chance meeting – this is what GBR30/30 is all about

On the A30 we stopped in a lay by for Gav to test his blood glucose. A random Land Rover pulled up and out go two people and walked over to us. It seemed a little strange at first.
“Hi” they said and told us that they’d followed the GBR30/30 information on Facebook and just wanted to come and meet Gav and say hello. They lived in Truro where the female was diagnosed with Type 1 Diabetes within the last year, aged 29. She was inspired by Gav and his challenge and just wanted to say “hi”. This to me epitomises GBR30/30: to bring awareness to people diagnosed with Type 1 Diabetes so that they can see that the can achieve great things, they may need to work around/with diabetes but it need not stop them. It was fitting that this encounter happened on the last day of the GBR30/30.

Water, water, give me water, says Gav

The route I’d planned would see Gav running into Penzance around the beautiful bay, in front of the mighty St Michael’s Mount. Things changed though when Gav saw the sea and he decided to go in for a little paddle, to help soothe his legs.
GBR3030 tweet about Gav having a paddle

Gav stands proudly in front of St Michael’s Mount, with 12 miles to go until Land’s End:
Gav in front of St Michael's Mount

So much support

At Penzance we met with everyone else before the final push. Well, I say push as it was nothing, it was still TEN MILES. That’s a distance I couldn’t run in a week, let alone one day where 30 miles had already been run. Knowing how slow I am at going up hills and not wanting to slow Gav/Matthew down I put my bike on the car and got taken to the next meet point and cycled on from there. In my mind the hill was too steep for me but as I drove up it I was truly gutted I didn’t attempt it.

Growing Oceans

Gav powered on towards Land’s End whilst I stayed at the back cycling behind Matthew, who had already run one of his furthest distances ever but still had 5 miles to go. I tried offering some encouragement but stayed away from the “just one more hill” comment as I could never be sure. Gav was on a mission, there was no way we were going to catch him up and I knew at this point that I wouldn’t get to see Gav finish at Land’s End, yet it didn’t matter as Matthew seemed to need my support more than Gav did at the moment.
The oceans grew bigger and bigger as the horizon opened up in front of us. We could see clouds on the horizon, or was it, no, actually, that’s the Isles of Scilly. Wow!

The last push

Safe in the assumption that Gav had already finished, Matthew strode on, passing the first/last pub in England, going through Sennen and finally on the straight towards the Land’s End Visitor Centre.
Gav’s Dad Vince was waiting with the Olympic Torch for Matt to pick up and run with.
Matt strode on, we could hear cheers getting louder and louder pulling Matthew towards the finish line.

Fantastic end

Everyone celebrated together, one big team, those that had done it, those that had supported it, all happy together. Gav looked knackered but elated, drenched in champagne. Now it was time for the photos at the signpost and this seemed to go on forever.
Other kids just there for the day saw the Olympic Torch and had their pictures taken with it; anyone we told about what Gav had just completed was amazed, many saying “ran, did you say ran?” to me; the photo taking went on and on.

Gav’s last day run video

A short video of Gav’s run, with some of the photos at the end

Matthew’s last day run video

Much more footage of Matthew, because I stayed with him for support

And finally…

Gavin and me at Land's End

Gav’s GBR30/30 Challenge – Day 29 to Gav, day 1 to Amy, day 3 to me

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Gav's GBR30/30 ChallengeGav’s GBR30/30 Challenge poster

This article is about my involvement with Gav’s challenge, where I cycled next to him during the last four days of his challenge, whilst he ran 30 miles or more each day for JDRF and DiabetesUK.
If you’re expecting to find out about how Gav got on with his diabetes or running you’re going to be disappointed, you’ll have to wait and buy the book or attend one of his talks. Sorry but his tale is his to tell, not mine.

Saturday, 25th May 2013 – Bodmin to St Agnes

Today was my 12 year old daughter Amy’s big day: she’d cycle her longest distance ever (27 miles); meet an inspirational athlete who, like her, has type 1 diabetes; raise lots of money for charity; run with Gavin into St Agnes carrying his Olympic Torch. My wife Jane would also be cycling with us today.

The planned route and elevation

Late the night before I changed the plan slightly so we’d join Gavin about 3 miles in, halfway up a 500ft hill. Why? Well to be honest I’d had enough of hills by this point and I didn’t want Amy’s big day to start with a 500ft hill climb, knackering her out with still 27 miles cycling and a run to the end with the Olympic Torch.

Setting off from Bodmin Jail, or Gaol to ye olde rascals

Gav was going to depart from Bodmin Jail and although we weren’t going to cycle from there we went to see him off on his run, to then join him 3 miles later. When we got there everyone was downstairs in the old jail checking out the cells, we ventured down there too but I knew Amy wouldn’t last long, she hates things like that.
Afterwards it was photo time and Gav had a little issue to sort out before we could start his run:

Our journey begins

Meeting Gav three miles in we parked the car in a country layby and left it there, hoping it would still be there 10 hours later. We were halfway up the hill we were trying to avoid but actually it didn’t seem to bad, probably because yesterday’s gales weren’t there any more, leaving a lovely sunny day for us to enjoy.
After a couple of miles Gav’s sister Kaylie joined him running and Amy warmed to her straight away, cycling next to her for the next few miles.
We passed by a road sign for a town which made me smile, especially whilst on a diabetes-related trip.

Lovely countryside, quite roads

For the next few miles we cycled on cycleways, the Goss Moor trail (where people on horseback rode past) and very quiet roads. The sun was shining down and I only was pleased not to need the fleece+jacket I’d worn on the previous two days.
Amy and Jane were enjoying themselves too.
httpv://youtu.be/Q5-pgPmXt1s

A great support team

Throughout the day Gavin’s family met us at different points, giving Gav a cheer as he neared them, motivating through the next stretch.
httpv://youtu.be/LtrLYHkEZaM

Gav in “Countryside Meltdown Shocker”

On the way to the final checkpoint, Gav laughingly had a bit of a breakdown, longing for tarmac and concrete. Watch it happen:
httpv://youtu.be/3fl3tJjzNcc

A cock-up of a finale

day 29, new inn goonhavernWith 6 miles or so to go we stopped at the New Inn at Goonhavern for a quick drink, meeting up with Matthew Wood and his wife Clare – Matthew ran the first day with Gav and was going to run the last too. Gav’s Dad Vince bought me a refreshing pint of shandy and as he passed it to me Gav said “right, I’m off to finish this thing”.
“Erm, ok, Gav, I’d better drink this first.”
Matthew was staying in St Agnes and told have which way to run, but it differed to the plan I’d done previously, but I hatched a plan where he’d go one way and we’d go the other and get in front of him, to be in St Agnes ready for his arrival. Amy would then collect the torch and run with Gav to the end point, the St Agnes Hotel.
If only it had worked out like that!
Leaving twenty minutes later than Gav we sped down the first hill – at 35mph for me: “woohoo…yeah…damn, that hill goes up…and up…oh kak”.
The series of hills kept coming and coming, downhill then uphill and downhill again.
After cycling over 23 miles already the last 4 were killers to our tired legs.
Day 29, Amy with torch at St AgnesThis was broken by calls from Emilia, then Gav, then Vince (Gav’s Dad) then Emilia again; all asking us where we were and when we’d arrive. I had no clue.
Finally, St Agnes neared and Gav met us, gave the Olympic Torch to Amy and ran up the hill with her bike, whilst Jane and I followed, slowly.
Amy was elated, but sadly for Jane and myself we’d missed seeing her finish with the torch.

Day 29, finish group shot

Gav’s GBR30/30 Challenge – Day 28 to Gav, day 2 to me

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Gav's GBR30/30 ChallengeGav’s GBR30/30 Challenge poster

This article is about my involvement with Gav’s challenge, where I cycled next to him during the last four days of his challenge, whilst he ran 30 miles or more each day for JDRF and DiabetesUK.
If you’re expecting to find out about how Gav got on with his diabetes or running you’re going to be disappointed, you’ll have to wait and buy the book or attend one of his talks. Sorry but his tale is his to tell, not mine.

Donation, donation, donation

If you’d like to donate to Gav’s GBR30/30 Challenge fundraising pot please click this: http://bit.ly/gbr3030donate

Friday, 24th May 013 – Plymouth to Bodmin

Today would see us leave from Home Park, the home of Plymouth Football Club and attempt to make it to Bodmin, over some hills potentially worse than yesterday. At least yesterday’s hills were at the start, today they were all the way through.

The planned route and elevation

Today’s route on flat land was due to be 33.1 miles, or 53.3km in new money.
You can click on the map to show it in Google maps:

Oh my God, my legs hurt

After the longest ride I’d ever done and a couple of pints of (medicinal!) cider later I’d almost fallen asleep in my dinner, but typically didn’t sleep once in bed as my legs were shouting “you idiot, why didn’t you do a bit more cycle training for this!” at me throughout the night.
They didn’t feel any better in the morning.
I compared the elevation plans for yesterday and today, with dread.

Crossing the Tamar

Gav and I set off from Plymouth Argyle FC’s ground, home park and headed towards the Tamar Bridge. As we got nearer it struck me that this was a momentous time as Gavin stepped foot into the last county in Great Britain, leaving him with around 90 miles still left.
httpv://youtu.be/aJQBU0BwKY4

It’s pretty but it’s hilly

The countryside around us as we went north turned into rolling hills, often full of ripening rapeseed.

A slight headwind

The hills meant I’d lost Gavin once again as he surged forward as if they were flat. I had no idea how far behind I was but kept on going up the hills hoping to catch him up at some point before the next checkpoint at Quethiock.
The wind was heading directly towards us for most of the day but only became a real problem when out in the open. Here’s a sample of what we faced, see how the wires sway and the speed of the clouds. The shaky camera was caused by the gusts:
httpv://youtu.be/oPLwijC5LNM

Where’s Gav?

I reached Quethiock and found my Dad there waiting with a sandwich for my lunch, but where was Gav? He was way ahead of me, but I’d caned it down any available hills and never caught up with him. He called, he was at Blunts, a village I’d passed through 2.4 miles beforehand. He was lost and had done far too many miles already, but luckily his aunt and sister were with him.

I didn’t quite make it

After Quethiock I pressed on but due to pretty steep hills and an horrendous gusting wind I called it a day at Liskeard, having done only 21 miles. If there’d been no wind I’m sure I would have managed the full distance. I guess I’d only set out to cycle 100 miles with Gav, that’s 25 a day and I’d already covered 57 in two days, but I was disappointed about stopping early.
The route I covered was:

Gav’s GBR30/30 Challenge – Day 27 to Gav, day 1 to me

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Gav's GBR30/30 ChallengeGav’s GBR30/30 Challenge poster

This article is about my involvement with Gav’s challenge, where I cycled next to him during the last four days of his challenge, whilst he ran 30 miles or more each day for JDRF and DiabetesUK.
If you’re expecting to find out about how Gav got on with his diabetes or running you’re going to be disappointed, you’ll have to wait and buy the book or attend one of his talks. Sorry but his tale is his to tell, not mine.

The night before…

Dad rang me on the phone to confirm the time he was picking me up in the morning.
“Ok, Kev, I’ll see you at 5am”
“What, 5am! No, later, can we aim to leave here at 6am?”
We settled on him arriving at 5:30am, to leave at 6am on our 3 hour drive to Torquay in Devon, to meet Gav and cycle 30 odd miles next to him. It was going to be a long day.
5:30am obviously stuck in my Dad’s head, as that’s when he left his house, to drive to mine, 45 minutes away.
We were already late.

The route and elevation

Today’s route on flat land was due to be 33.6 miles, or 54.2km in new money.
You can click on the map to show it in Google maps:
GBR3030, Day 27, route map
GBR3030, Day 27, elevation

Plymouth ho!

At Plainmoor, the home of Torquay Football Club, we met Gavin, his sister and his Aunt, took pictures and readied to set off.
I presumed that the hilly route would be quite normal to Gavin, who’d already run through Scotland, the Cotswolds and the Mendips but he next four days turned out to be some of the hilliest routes.
I was dreading it, I hate hills, which is why I’d cleverly (or not!) spent hours changing the route to minimise elevation changes and therefore hill climbs. It only took me a couple of miles to realised all this was in vain and that I should have put it a lot of hill cycle training beforehand; it was too late now.

Did I say that I hate hills?

Just two miles into the route came our first steep hill, a road still within the boundary of Torquay.
I slowed as I cycled and watched as Gav ran on, powering up the hill. Half way up my unfit legs told me to get off the bike and walk.
I was disappointed but as I walked up I looked at the terracing of the houses and realised it was probably the steepest I’d ever attempted to cycle up.
And just at moment Gav’s sister Kaylie caught the moment on camera.
The next 3km were up hill all the way and at this point I lost Gav.
Here I was, meant to be supporting someone who’d already run 780 miles and I couldn’t even keep up. I didn’t catch up with Gavin until we reached the first checkpoint, 5 miles or so in.

Downhill(ish) to Totnes, then up, up, up

Kaylie joined us for the run to Totnes, running alonside her brother for the next 5 miles.
The lack of inclines pleased me and finally I felt like I was doing what I set out to do, thoroughly enjoying cycling through the beautiful countryside.
Totnes approached, where my Dad was waiting with my first pasty of the trip, which on reflection probably wasn’t a good idea.
Out of Totnes the road just went up and up, on a road not suitable for cars, or my bike, at least that’s what it felt like.
Through miles and miles of countryside we went and reached the halfway point at our first pub stop, the Avon Inn at Avonwick. I looked forward to a beer until I looked at the elevation of the road that came next. I ordered a coke.

Climbing and falling

The new few miles were pretty good although it was getting pretty windy and we could see rain in the distance.
Gav had told me he would run at 5mph to conserve energy but at 24 miles in he was caning it at 9mph, as the photo shows.
The road was getting busier, the clouds were getting darker but we pressed towards Plymouth.
Through the pouring rain I cycled into Plymouth and towards the finish line. My odometer told me I’d already clocked 35 miles, the most I’d ever cycled by 10 miles…and that was on the flat.
Gav and I neared the finish line and just before crossing the road I fell off my bike, with my feet still in the clips. My elbow felt like it was broken, I may have sworn a little.
By the time we reached the finish the sky was turning quite blue…as was my arm.

Plymouth. Hi!

Gav ran with the torch to the finish, near the Fish on a Stick and the Mayflower steps.
I was pretty relieved today and its weather and its hills was over.
Day one end, 36 miles done to Plymouth

And finally…

Gav knew the cold water in the harbour would soothe his legs so like our countrymen in 1620 he descended the Mayflower steps in search of salvation.
httpv://youtu.be/ynjPNTVRH70

JDRF Discovery Day (Verwood, Dorset) and Mini Tweetup

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JDRF logo

My second Discovery Day

Even before we “met” this Discovery Day and I have had a rocky relationship: “she” was the first one I booked but then I ditched her in favour of meeting friends at the Bristol JDRF Discovery Day in April. But she wouldn’t leave me alone, bombing my timelines with information about her, so I relented and booked up to see her with only a few hours to go until her big day.
This article about the Bristol JDRF Discovery Day explains what Discovery Days are about, or you can check out the official information on the JDRF web site.

Stuck for something to wear

I was hoping to meet a local tweep named Amy – let’s call her AmyTwo to avoid confusion with references to my daughter –  there,  and already knew that recognising a t-shirt is easier than recognising a face from an online avatar, so I put a joke out there on Twitter, mainly for AmyTwo to be able to recognise me.

GBR3030 shirts

I was proud to wear one of Gav’s GBR30/30 Challenge t-shirts having cycled 100 miles next to him and knew it would be easy to be recognised in one of them, it turned out to work very well.

Faces to names and all that

At the entrance JDRF’s Louise was there to sign people in. Of course I wasn’t on the list because I was such a late entrant but I said my name and her response was “Oh, hi Kev, I met your lovely wife last week at the JDRF Speakers Training day”. Jane’s signed up to be a speaker on behalf of JDRF, speaking to Rotary Clubs and the like, starting quite soon.
I went into the auditorium, AmyTwo wasn’t there and neither was anyone else I recognised.

Ooh, a new blood glucose meter which we haven’t got

It’s becoming a standard joke that whereever I go I pick up a new meter for my Amy: I got a ContourUSB from the last JDRF Discovery Day; on the GBR3030 I saw Gav’s Glucomen LX meter and ordered a free one of those.
Here I saw a lady demoing a meter by Mendor, one which I’d seen a video of a couple of weeks ago and thought it looked interesting, well boring looking actually but the concept was interesting.
Everything you need, pricker, strip, meter and case are contained in one unit. Here’s a couple of their videos:

 

The first talks start

First up was JDRF’s Nikki who opened the day, said a bit about the speakers and later as a bit of ‘cheesy fun’ (as she called it) got us to raise our right hand and state “I do solemnly swear, that I will never, just refer to type 1 diabetes, as “diabetes”, and I will always say “type 1 diabetes”‘. It raised a lot of laughs and actually was a very valid point. If we, the people associated with Type 1 Diabetes don’t always quality the type then what chance is there that others, like the press and media, will do the same?

Diabetes Awareness Dogs and Wessex Assisting Dogs

I saw a similar presentation to this in Bristol but for me this one was much better, probably because they actually had two well behaved dogs there. To be fair at Bristol I spent the duration of the presentation mucking around on twitter with the #DOC tweeps, jokingly asking Annie to get Jane a cup of tea and then having a cup being passed along the line – hilarious.
I was amazed to hear how the dogs are trained and just the sort of thing they can do, such as trying to alert their owner of a forthcoming hypo, bringing them hypo supplies and evening pressing alarm buttons should their owner not respond.

Superb presentation by Dr Tim Tree

Dr Tree works at Kings College as part of the D-GAP programme and alongside Cambridge and Bristol.
He’s a pretty smart cookie. But would he be too smart? Would I understand his presentation?
I had these worries as the two PhD holding speakers at Bristol presented very well indeed but it was just a little too technical for me, someone who never studied Biology or Chemistry at school whatsoever.
Dr Tree was brilliant though, aided by a very whizzy presentation which sadly for me was done using a Mac; still I’ll let him off this faux pas.
Dr Tim Tree presentsHe has type 1 diabetes himself, as have relatives of his, but not his siblings and he spoke about them, getting diagnosed and using multiple blood samples of theirs in his research to discover why he got it but they didn’t.
He took us back to 3500 years ago and explained how ancient Egyptians detected the presence of diabetes: they used ants and two samples or urine, one without diabetes and one suspected of having it, if the suspected patient had diabetes all the ants moved to his/her urine sample. Simple. Effective. Sadly it didn’t help as prior to 150 years all diabetics died as no medicine had been discovered.
He brought us forward to the last 5 years and told us all the recent breakthroughs being discovered and the part D-GAP (and Bristol, Cambridge and Kings) play in it.
The presentation was fun as he used pictures of his family and one of his sons who was in the audience helped out too. Much use was made of lego figures and in the end he said “there you are, 5 years of research summed up by 6 lego figures” – the audience laughed.
He made no promises about 100% cures or 100% prevention but ultimately we were left with hope.
He ended well stating “none of this research would have happened if it wasn’t for the money from JDRF” and thanked us for giving it.
If you read this Dr Tree, thank you very much for what was one of the best presentations I’ve ever seen.

Meeting up with AmyTwo

Whilst the talks were going on I spotted AmyTwo, a couple of rows in front of me and at the end I went over to say hello.
“Hi, are you Amy?”
“No, I’m Alice”
Oops. I apologised and sheepishly walked away.
Whilst looking at some of the stands the real AmyTwo spotted me – I’m guessing my t-shirt trick worked once more. I didn’t recognise her at all from her avatar, thank God she found me.
AmyTwo was due to be in Jane’s group at the JDRF Volunteer Speaker training course last week but unfortunately she couldn’t go so we chatted about that for a while until it was time for her to go.

Meeting up with local parents and preaching about pumps

I thought I recognised someone from the carbohydrate counting course the other month, I had, it was another parent, Steve, whose young son has type 1.
Steve told me that they’d only done the carb counting course because they’re looking into pumps and that they just needed to decide between one of the two pumps the hospitals offer (Medtronic and Roche).
“Two? Actually Steve you have more choice than that, Amy’s getting an Animas Vibe in two weeks.”.
I couldn’t help myself extol the benefits of the Animas Vibe, citing waterproofness, the colours, the lack of bluetooth, the CGM potential, the waterproofness (again).
Steve seemed quite interested and asked for my details.
I hope we’ll be in contact soon as it’s important choose the right pump – when they have a choice – and it’s important to know what your choices are.
Steve, if you’re reading this, I’m sorry if I went on a bit about the Animas pump 🙂

Like a red rag to a bull

I only wore the GBR30/30 t-shirt so AmyTwo could recognise me but on the day three people came up to me and asked if I was something to do with Gavin’s challenge.
They were pleased when I said “yes” and they all asked me questions about what I did (cycled 100 miles, last 4 days), how Gavin was during/after his challenge and each one of them ended with something similar to:
“That lad has been an inspiration to me/my-daughter/my-son.”
“You’re right, he is, isn’t he!?”

Chatting with JDRF staff

Just before I left I chatted with JDRF South’s Louise about everything that’s been going on, with our fundraising efforts, Jane’s volunteer speaker role, Amy’s fundraising and forthcoming pump.
She was so pleased with our efforts and kept thanking me but honestly it’s the other way around, if it wasn’t for what JDRF do people wouldn’t do what they do…and then there’d be no hope for a cure for Amy – one and two 🙂

The Portsmouth “SweetMeet”: A privileged invite

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Dr Iain Cranston gives a talkDr Iain Cranston let’s us know about future improvements

Many months ago Dr Kar from Portsmouth’s QA hospital tweeted a question to the diabetes online community to see if there was any interest in an idea he (or his team) had: would people like the opportunity to meet with healthcare professionals outside of the normal setting, asking questions openly and receiving open answers.
The response was positive, especially from me, and the QA team set up organising the event.

Why?

The need for an event like this was clear to me: it would give a chance to speak openly with professionals who don’t have a defined set of questions to get answers to, or things they have to inform us about. I could ask those questions which seemed silly to me, the sort of things I don’t want to waste anyone’s time over, the sort of thing I would definitely not call the clinic about.
Clearly others felt similar things.

Progress, announcement, sadness, happiness

I’d been following the discussion about the SweetMeet before my Twitter friend Laura even put that name forward. I was excited about attending, along with Amy.
The announcement came out that it was on the 11th May and was open to any type 1 diabetics…who were over 17.
Darn it, Amy’s only 12, I can’t go.
I wished Dr Kar luck but said it was shame I wouldn’t be able to go and he replied by saying he had the power to break the rules for certain individuals.
Great, we’re in, I was happy again.

A simple terms of reference

Initially it was difficult to figure out what the event would be like until Dr Kar coined the phrase “Speed Dating With The Professionals”.
Now it all made sense.
The mention of free bacon sandwiches smoothed the way for many I suspect.
The layout of the morning was set as follows:
– welcome & introduction by Dr Kar
– a speech about patient experience by my friend Laura Cleverly
– speed dating with the professionals
– a speech by Dr Cranston about what’s on the horizon for type 1 diabetes
– an open forum with Lisa Skinner, Diabetes Nurse Specialist

The funny moment of trying to register

When trying to register for the event I called and spoke to a lady who took my details.
“Your name?”. I gave it.
“Your address?”. I gave it.
“Can I just check that you’re over 17 and have type 1 diabetes?”. “Erm, well actually no, but I’m allowed to come, just put me down and ask Dr Kar.”.
“Erm, okay” she said.

The event starts

Driving to the event today Amy and I wrote down as many questions as we could, just in case we got the opportunity to ask them.
Arriving this morning we registered and met with Laura and quickly found the bacon rolls, mmmmm bacon!
We looked at the stands and happened across the one run by the widwife team. “Okay, Amy we don’t need to worry about this for a little while”. Instead of moving on we had a really good chat with the two midwives there.

Ladies and Gentlemen take your seats

It was time to take our seats and when walking into the room we headed to the back only to be greeted by a “hello Kev, what are you doing here?”. It was a guy from work, a guy who I see often, a guy I’ve played football with for years, a guy who had type 1 diabetes, yet I never knew.
It was great to bump into him and have a great long chat about diabetes care, pumps and stuff.

Intro by Dr Kar

Dr Kar is an eloquent speaker, a great advocate of good service by his team and someone who could literally talk for Britain, but in a nice way. He’s so enthuastic about being able to work together (patients and professionals) and shape the future together that listening to him talk about it makes you feel so positive.
He spoke about how the event came about, the ideas, the desires and then he passed over to Laura.

Laura’s story

I only got involved with the Diabetes Online Community after a friend spoke about Laura’s Ninjabetic support group (read this) being in the news. We’ve spoken on Twitter so many times that Laura seems like a member of the family and I know her story so well.
Laura, Mark and I had tweeted earlier in the week about Laura’s speech: she didn’t know what to say. She suggested the three of us do a flash mob but luckily Mark and I turned it around and suggested she just spoke about herself, about her diagnosis, about her salvation from the dark days of ignoring diabetes care.
She spoke from the heart about her diagnosis, a story I could relate to so well, a story I knew off by heart. I was quite moved, more than I’ll admit to for sure. My tweet sums it up:

Speed dating starts

We all sat around the 7 tables, there was six on ours including me, Amy, Laura (@ninjabetic1) and Mark (@thedteam2) who’d travelled all the way from Swindon, plus two other guys from the Portsmouth area.
Each of the 7 professional people/teams switched from table to table to table in true speed dating fashion, having 8 minutes each.
In those 8 minutes we had to get through multiple questions from our side and theirs. This event wasn’t just about patients getting answers it was also about professionals finding out what patients require, so that they can improve their service.
All in all it worked very, very well, it was just that 8 minutes wasn’t enough, we could have done with about 30 minutes each, but that just wouldn’t be realistic.

Meeting Derek, refreshments and quiz time

At 11:15ish we broke for refreshments which gave me a chance to chat with my friend from work. Whilst talking 76 year old Derek Bockett said hello and we had a nice chat. I recognised him from last year’s JDRF Walk To Cure which we’d done. He’s an amazing chap, 76 years young, full of life, fit as a fiddle and has had type 1 diabetes for 61 years! He told us to keep active and make sure we kept ourselves well. What a great advocate for diabetes.
Amy came up and asked me to fill-in the carbohydrate counting quiz: she’d done it and wanted to increase our chances of winning the prize. I didn’t bother.

Talk by Dr Cranston

Back in the room and Dr Cranston (Consultant Diabetologist – and more importantly Laura’s pump consultant) gave a great presentation about what’s on the horizon for type 1 diabetes, current stuff, future stuff and some quite complex stuff. I enjoyed the talk even if some of it flew right over my head.
I really admire Doctors who give talks like this. As a geek I know how hard it is to get things across in a language which is understood by the layman, without comprising what you need to say and the points you need to get across. Dr Cranston did this extremely well.

The quiz result

It was time for the carbohydrate counting quiz result.
Who had guessed the right amount of carbs for a Sunday Roast and a Spag Bol? Not on the same plate you realise, there was two plates 🙂
“The roast was 50g”. Amy whispered an emphatic “Yes!”
“The spag bol was 90g”. Amy wispered “darn, I said 100g”.
“And the winner is….Amy Winchcombe”
I let out a “Yesssssss!”
The problem was the the prize was a bottle of champagne and Amy was 12 and it wasn’t good form for a healthcare professional to be giving alcohol to a 12 year old. I said that that’s the standard age to start drinking in Portsmouth but (luckily) no-one heard me.
The champagne was given to Laura, sat next to Amy, who put it on the table.
Yay, we’d (erm I mean Amy had) won some champagne.
I’m so proud that in a room full of diabetics many of whom have counted carbs for years that Amy’s knowledge proved the best. Well done Amy.

JDRF Discovery Day (Bristol, 27th April 2013) and #DOC Tweetup

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Roche Accu-chek Combo pump and meterJuvenile Diabetes Research Foundation – the world’s biggest Type 1 Diabetes Charity

What’s a Discovery Day?

A JDRF Discovery Day is an event which is organised by JDRF for its supporters to learn about research currently going on, about reasons why people get type 1 diabetes, about other interesting areas to do with type 1 diabetes.
Parents and kids are welcome to listen to the presentations or the kids are welcome to attend activities being held outside the room and run by volunteers, making it easy for parents to listen undisturbed.
If you follow JDRF in any way you’ll find out about these Discovery Days but all the information is on their web site here: http://www.jdrf.org.uk/research/research-events.

Booking this event

I first booked a Discovery Day being held later on this year in Dorset, it was the nearest one to me and we’d never been to one before.
I put a tweet out asking if anyone else was going to the same event; no-one was, but a couple of people were going to one in Bristol. Bristol isn’t that far away, sub two hours, and I wanted to meet these two people so I changed plans and booked for Bristol.
Before I knew it more and more people had registered to go to Bristol, there was likely to be quite a few of us.
The most amazing news arrived that Derek and family were going to come too, a 5 or so hour drive down.

The day draws near

A couple of others had registered too and in total 60 families had registered for the event.
The #DOC’s own party organiser Annie booked a table for several of us (Paul, Polly, Mark, Sarah, Derek & co, Annie & co, me & co, plus a couple of other local families) to eat at the buffet place Cosmo in town afterwards.
It was going to be quite a day.
The night before I changed my avatar to a picture of the t-shirt I was going to wear and put a tweet out to come and say hello if you recognised it/me.

An early start

Up at 6:30am and out the door and on the road by 7:40am meant we arrived spot on time at 9:30am in Bristol and headed for the venue, @Bristol, a cool science centre. We registered and looked around to see if I could recognise anyone; I didn’t. Oh dear, how were we going to meet up?
I was just getting a coffee and Derek tapped me on the shoulder, thank God for that, at least there’s a few of us.
A quick chat and I went to retrieve my coat and got recognised – the t-shirt avatar was working – by Chris and we had a great chat about the GBR3030 John O’Groats to Land’s End run that Gavin Griffiths was starting at that exact moment.
Others turned up, Annie & crew, Paul, Mark and Polly but where was Sarah?
Another tweeter Louise came over to say hello to me too.
This was already turning out to be a great day and the event hadn’t even started.
But where was Sarah?
Jane and I sat down, with Derek’s family next to us, and Annie’s family next.

The talks begin

First up was a great talk about JDRF by one of the organisers Danielle, who spoke eloquently about the charity and the work they do.
Next up was a JDRF research Doctor named Maebh. She spoke well about the avenues JDRF research is taking, what’s happening now, what’ll be happening soon. When it came to questions people fired research questions at her and understandably she answered well, then a few people asked JDRF questions and still she knew the answers. I was very impressed with her knowledge, given her tender years.
Next up was a research scientist from a lab in Bristol. She spoke very well about what is causing the surge in type one diabetes and demonstrated an excellent knowledge of what research is going on around the world. Admittedly I got a little lost with some of the words but it all seemed to make sense and I left after this demo and the previous one with hope that at some point the cause would be isolated and prevention of it could be researched properly.

Having a bit of fun

During the next presentation I checked my tweets and saw that others had been tweeting; I couldn’t help but join in.
I saw Annie’s tweet about her location:

I couldn’t help being a little cheeky:

Moments later I felt the row of chairs move and saw Annie get up and walk towards the tea trolley, Derek saw her too, we both started laughing quietly, leaving Jane wondering what was going on.
A minute later and a nice hot cup of tea was being passed hand by hand along the line, to a very pleased Jane. Thanks Annie.

My favourite presentation

The highlight of the presentations for me was given by someone diagnosed with type 1 diabetes in 1966, Colin Rowland. This was no death-by-powerpoint, it was a heartfelt chat with a very interested audience.
Colin spoke about technology; about how when diagnosed his mum was constantly boiling his glass syringe with its huge needle; about how the first ‘technology’ he ever had was his Palmer Injector; about how today’s improvements make him think that in reality the artificial/bionic pancreas isn’t far away. To us ‘far’ might mean the year after next, to Colin it’s a greater number but one that will arrive.
Whatever technology we’ve got now, or in the next couple of years it beats the Palmer Injector he showed us.
Read more about Colin on his facebook page.

Time for lunch

After it was all over we headed to the all-you-can-eat buffet place Cosmo. We were quite late after seeing the delights of Bristol time and time again and we circled the one way streets.
Lunch was good and I was lucky enough to be sat within chatting distance of Polly and Paul and the next hour or so flew by faster than one of Paul’s Wednesday night tweetchats. I feel Paul may have bitten off more than he could chew when asking me about my interest in India. I know I’m an India-bore but I just can’t help it; give me a platform and I’ll talk about it for hours.
I felt a little guilty as I tucked into whatever I wanted to eat without a care in the world about carb-counting or bolusing as Amy and Jane were sat on another table.
After lunch we had a good chat and Annie gave me a demo of the Animas Vibe and associated kit, more on that in the next post.

What a great day

Today was excellent, I really enjoyed myself, I learnt loads of stuff and came away from the presentations with far more hope than I entered with. If you’ve never been to one, book one up now, it’s really worth it.
The #DOC people there today were a great bunch, a bunch I am pleased to be considered a part of.