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Portsmouth’s second SweetMeet – another privileged invite

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amyprize2Amy shows off the carb counting scales she won at the SweetMeet

In the middle of a busy weekend – clinic yesterday, TeamBloodGlucose cycle ride tomorrow – Amy and I had an invite to the second SweetMeet organised by the team at Portsmouth’s QA hospital. For us it was another privileged invite being personally invited by Dr Partha Kar for the second year running.

Amy and I met Laura and Tanwen as soon as arriving, then with a breakfast bacon butty in hand had a nice chat JDRF’s Sue and DRWF’s Lee. Helen the pump rep from Roche was there and to our surprise our Animas rep Emma arrived, pleased to see Amy and to hear that she was getting on well with her Dexcom CGM, which Emma trained us in only two weeks ago. It’s really lovely coming to events like these and knowing so many people, it’s like one big family.

Kicking off with a great team

SweetMeet2 was officially opened by Lisa who referred to herself as just a nurse before introducing the team who had given up their spare time. With the plan for the day read out Dr Partha Kar stepped up to start the day off, but before doing so he praised lead nurse Lisa for the dedication and hard work she puts in keeping the department running.

66 years and the future

nhs creation leafletWith the NHS being formed 66 years ago to the day Partha outlined the changes in the NHS and in particular funding, explaining that funding had been matched to requirements from 1948 until a few years ago when funding plateaued, starting a funding gap which is unlikely to close any time soon. But there is hope and it will be found by making sure the right people perform the right jobs, freeing up the Wizards (Consultants) by getting the Gatekeepers (GPs) to perform the tasks they can – these references coming from Nigel Mathers and Paul Hodgkin’s 1989 story about the NHS “The Gatekeeper and the Wizard”

Speed-dating with the professionals

Next up it was time to speed date with the professionals, with the audience staying at their tables and professionals moving around the round to ask/answer questions during each 7 minute slot. Seven minutes goes very quickly when questions are being asked and it’s amazing how much you can cover during that time.
The podiatry and retinopathy sessions explain a lot about the processes that we know very little about and gave answers about what you should expect (nerve tests on bottoms AND tops of feet) and by whom (GP surgery nurse).
Partha did a session and an important message came across: people can and should help themselves, a message I’ve lived by since discovering the #DOC (Diabetes Online Community). The bigger question though is how to get those not already engaged to become so as those at the SweetMeet were clearly engaged already.

My favourite speed date

My favourite speed date – this sounds awkward 🙂 – was with Dr Iain Cranston, who chatted about Abbott’s Flash Glucose Monitoring, something I’m looking forward to being announced officially in September at EASD in Vienna – like many I’ve had an invite to go but can’t quite justify it. It has the potential to revolutionise finger-stick tests as it promises to do away with them, instead relying on swiping a NFC device across a sensor which is changed every two weeks. I didn’t think much of this technology initially but when I realised that it stores the last 8 hours of tests I realised it could be used as a non-alerting CGM, which is just fantastic. Fantastic that is if Abbott pitches it at a price to rival meter strips.

Breakout session 1: are all carbohydrates equal?

This year saw the introduction of two breakout sessions, with Amy and I going to the one of carbohydrates.
With a session of 45 minutes, 15 people and two dieticians it was like being a kid in a sweet shop, although obviously the first rule of SweetShopClub is that you don’t talk about sweets in front of dieticians. 🙂
Starting off with some simple carb-counting we moved on to GI which raised some interesting discussions, based bolusing for low-GI and wave bolusing techniques for pump users.
It was the first time I’ve been able to talk sensibly with a dietician about LCHF (low carb high fat) diets, their effect/usefulness and more importantly whether they’re suitable for kids, or can be adapted to be so.

Breakout session 2: new developments for type 1 diabetes

Dr Iain Cranston held our second breakout session which started with us all stating the new developments we wanted to know more about. With islet transplants and stem cell research already on the board (two things which could go hand in hand to get people off insulin) I offered a couple of other things: smart insulin and inhaled insulin.
Dr Cranston’s knowledge of developments is great and filled us all in on each of the developments, answering my questions about beta-cell replacement whilst super-T cells still exist.
How often do you get the chance to ask questions like this, that’s the beauty of something like the SweetMeet. I have a feeling that if the allocated time hadn’t run out Dr Cranston and I could have chatted about stuff like this for hours.

A patient’s experience: educate yourself

Lee Calladine, spoke about his life with Type 1 diabetes which he was diagnosed with aged 33. As DRWF’s Event Organiser Lee organises events such as the DRWF Wellness Day South which I attended two weeks ago as well as last year.
Lee’s message fitted in nicely with Partha’s: educate yourself, find out about your diabetes and your gains will be great. Since educating himself Lee feels more in control, has got his HbA1c lower and minimised his risk of complications and that’s something we all want.

Thanks Sue

The second SweetMeet was a huge success in my opinion and Sue, one of QA’s dieticians, should be thanked by all who attended for organising a great event. Well done Sue, we really enjoyed it.

And finally, Amy wins another prize

At last year’s event Amy won a bottle of champagne in the carb counting quiz, which of course was commandeered by myself and consumed shortly thereafter. With high hopes she entered this year’s quiz and alongside a few others won another prize, this time a set of Rosemary Conley Nutritional Scales which will hopefully be very useful for carb counting.
Here she is with them:
amyprize2

Type Onesie fundraising for DRWF

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DRWF logoDiabetes Research & Wellness Foundation

Raising awareness locally

Last weekend a few Twitter friends and some of their families went to Havant shopping centre to raise awareness and money for DRWF, an international diabetes charity whose UK base is quite close to me. DRWF are unique in that they are a global charity helping people with all types of diabetes.

I’ve meet a few of the DRWF team before: Sarah (the CEO) at the Portsmouth Sweetmeet in May; Claire who does the social media at the DRWF Wellness Day South day in June. There’s something quite special about DRWF, after all which other Diabetes charity Chief Executive would recognise you instantly and come over and have a chat?

When my friend Laura (aka @Ninjabetic1) came up with the idea of raising some money in Diabetes Awareness Month it didn’t take her long to figure that trying to help DRWF was the right option. And so started the conversations which led to many of us local Twitter friends meeting for the first time.

Jane, Amy and Emilia were there; Steve, Suzie and their daughter were there; Laura was there; Helen and her daughter (who has Type 1) were there; Tanwen was there, along with Sarah and Claire and her husband from DRWF. I know what you’re thinking: where we you Kev, in your onesie? Sadly – well luckily really – I was going to see Chase & Status at the O2 in London, so sadly/luckily I couldn’t buy/don a onesie and wear it out in public. Shame eh?

Claire’s husband took a video at the event, it’s pretty good, watch it and get to hear how Type 1 Diabetes has affected my family and friends and what a cure would mean to them.

httpv://www.youtube.com/watch?v=30ioXK51uis

JDRF Walk to Cure – Meetups, tweetups & eat-ups

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walktocure2013
Warming up before the walk

A tale of two cities

Each year JDRF organise Walk to Cure sponsored walks around the globe, with this year’s falling on 13th October for both the South and South-west & Wales regions. Right from day one I was torn as friends of mine (Becky, Helen, Sarah) were going to the event in Netley near Southampton – merely a 10 minute drive from me – and others (Annie, Mark, Chris and more) were going to the one in Bristol – a shade under 2 hours away.
With apologies given to my local friends we signed up for the Bristol Walk to Cure.

“Luke, use the force”

As we neared the university campus where the walk was starting from we saw a couple of Star Wars Stormtroopers. It seemed a bit bizarre but maybe that’s what people do in Bristol each Sunday morning…oh no, hold on, this where we’re meant to be.
*brakes screech to halt*

One hug too far

Walking up to registration and Annie spotted us, greeting us with the customary hug that we’ve become used to when meeting Twitter friends with whom I speak to more regularly than family or local friends. I looked around for Izzy, who I’d been wanting to meet for ages; there she was waiting with another hug for me.
Annie pointed me towards Rufus – JDRF’s 6 foot tall bear – who was walking towards me. “Don’t forget to kick him in the shins” she said as inside the costume was her husband.
The handshake wasn’t working between man and bear so with outstretched arms Rufus demanded a hug. It worried me how pleasingly cuddly Rufus felt but worse how long he held me for, a little too long in my opinion. 🙂

Expected and unexpected meet-ups

Recovering from my bear hug I walked into registration and was recognised by Chris who’s young son Alfie had been part of Gav’s GBR30/30 that Amy and I had been involved with earlier this year.
After, we met Mark – whom we’d met many times – and Danielle who’s on Twitter too.
Before the walkers went through a warm up routine a speech was made by Colin Rowland, whom I last saw at the JDRF Discovery Day in April. Colin and I had spoken a fair bit since April and it was great to see him; I had no idea he’d be there.

Walking to Cure

These walks are short, being aimed clearly at the youngest kids, and we opted for the longer 5km walk.
At this point the rain started. Typical!
Amy was walking in front with Annie’s kids, whilst Jane and I walked round with Colin and his wife, having a great chat about diabetes, Amy, pumps, CGM, the future, running and cycling.
At the half way point we left Colin and waited for Annie/Mark/Izzy/Danielle who never appeared. I suspected they’d employed the old school cross-country cheat tactics of waiting behind a tree somewhere until everyone returned.

Post exercise carbs & protein

As any athlete knows you need to make sure you take care of your body replenishing lost carbs and taking on protein. With this in mind I polished off a huge slice of Annie’s superb chocolate cake and we planned a trip to Nando’s… that’s an okay post-exercise recovery plan right?
Nando’s was great, with 10 of us there, adults at one end, kids at the other and me getting to sit next to the wonderful Izzy and hear all of her future plans.

Today had been brilliant.

Rufus’s finest moment

Just before the walk the walkers were put through a warm-up routine, so I’ll leave you with a video of Rufus’s finest moment:

httpv://youtu.be/zrMbDl3nhis

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.

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

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.

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.