Nightrider 2016, the Diabetes Dads and the Videos

JDRFDadsLogoShortly after last year’s Nightrider there was a little conversation on our UK Diabetes Dads group. I suggested we should try and get a large Dads team together and immediately got two Yes’s from Nightrider stalwarts Dave and Andrew. Little by little more Dads joined ending up with 23 Diabetes Dads and some friends. In total there were 30 of us riding with 27 of those fundraising for JDRF.

A little motivation & from nothing to everything

Many of the Dads have personally thanked me for organising and motivating them to do Nightrider but the truth is I did very little, they wanted to do this and everyone motivated everyone else, with tales of training rides, pictures of bikes, etc..
A fair few of the Dads didn’t even have a bike and stories such as Vincent’s weren’t uncommon: Vincent last rode a bike on his paper round 25 years ago. Alistair’s story was similar. Others such as John signed up for the 60km ride but soon got persuaded that the 100km ride was achievable.

Lighting up the roads of London

After doing Nightrider in 2014 I knew our large team would get split up so I search for lights for our bikes and found these which I’ve gotta to say looked by far the best lights at Nightrider. It gave us the chance to display multiple images throughout the whole ride, include JDRFs logo, the JDRF/Dad logo I created (see top right) and others such as the Nightscout logo. In my opinion these were the best lights of any bike doing Nightrider.

Team motivation

makereadyyourbikeStrava and Facebook are great motivators, people put up their rides, you see it and feel guilty you haven’t ridden for x days, so you go out for a ride and post it on Strava/Facebook afterwards. And so on.
And on.
With so many of us in the team the rides got longer, the bravado better, the team closer and the jokes worse. Far worse [thanks Vincent 🙂 ]. But it was turning into a great team and forgetting Nightrider we all just wanted to meet up and chat and joke.

Nutter on a bike

My RideLondon 2015 cycling buddy from last year Paul Smart made a heroic decision that to prise hard earned cash away from his friends Nightrider would not be enough. No, 100km is far too easy (!) so Paul planned to ride to London from west of Birmingham, leaving on the Friday and cycling 100 miles to Aylesbury before finishing the other 50 miles on Saturday morning and then taking on the Nightrider that night.
Nutter.
But he did it, in fact he smashed it.
Legend.

25 Lamb Bhunas

ddadscurry
It seemed like a good idea at the time with Lahore Kebab House being a firm favourite of mine and Andrew’s: let’s all meet and have a curry before the ride.
Right now I can realise that a curry before cycling 100km isn’t such a good idea but in truth it went done a storm, especially Lahore’s legendary lamb chops which we ordered 6 plates of.

Nightrider dawns…or rather dusks

Nightrider2016Team groupshotThe curry, or rather the tube to/from had made us late for registration, it was bedlam, no-one knew where to queue up to get their ride numbers and hi-viz vests. Luckily Daniel’s wife Julie went into event organiser mode and sorted us out, thank goodness as we’d never have set off for ages otherwise.
As it was our supposed start time of 11:00pm had turned into 11:24pm.

And the ride?

Well, in short it was brilliant but I’ll let you watch these two videos to find out.
First it’s mine, turn your speakers on….

And second it’s the one shot by David Reid, featuring selfie-idiot me:

A lovely fundraising amount

Finally, the whole point of the ride was to raise money for JDRF and I think we did this pretty well.
My personal thanks goes out to Stuart, Matthew and Daniel for the sheer volume of sponsorship they got it. Amazing effort lads, well done.
DadsNightriderTotal

JDRF’s #Type1Catalyst at Parliament

JDRF Westminster Palace reception. Theresa May, Mims Davies, Amy and Kevin Winchcombe. Copyright John Nguyen/JNVisuals 25/04//2016

JDRF Westminster Palace reception.
Theresa May, Mims Davies, Amy and Kevin Winchcombe.
Copyright John Nguyen/JNVisuals
25/04/2016

It was a surprise when I opened the email inviting Amy and me to attend a Parliamentary reception, hosted by Jamie Reed MP and JDRF. What an opportunity not to be turned down, a chance to educate some MPs in the ways of Type 1 life.

Amy and I decided to make a day of it as going to London isn’t a regular occurrence for us. Arriving at Kew we headed straight for the one and only place on both of our minds, Camden. We both love it there, Amy especially and I made sure I kept my credit card firmly in my pocket, nowhere near Amy’s eyes and all those clothes, boots and all things funky. On the downside Suggs was nowhere to be seen.

Off to Parliament and nervously I waited in the security line wondering how they would react to Amy’s xDrip device, surely they wouldn’t be bothered about a collection of electronic components, with dodgy soldering, wires everywhere? Surely not…hmmm…well maybe. Turns out they weren’t bothered at all and didn’t even ask Amy to explain what it was.

Parliament started with a set change for Amy, then a hypo which took ages to clear and with the thought of standing up for two hours I kind of regretted the 3 or so hours spent wandering around Camden’s maze.

Our MP, Mims Davies, was keen to attend the event, accepting my invite immediately, and it was great to see her again and chat about Amy’s life with Type 1 and some of the research being done. Mims picked up a copy of JDRF’s Type 1 Research Today report published that day, something I’d not had a chance to read yet. Mims is always keen to learn more about Type 1 and Type 2 and that’s something we’re grateful for. Afterwards Mims published a campaign article More Research Needed for Type 1 Diabetes.

We went to get a professional photo done with Mims and the Home Secretary Theresa May was there so we got the chance to meet her. She was lovely with Amy, discussing favourite hypo treatments and how she prefers Jelly Babies to Dextro, which is Amy’s preference.

JDRF Westminster Palace reception. Theresa May, Mims Davies, Amy and Kevin Winchcombe. Copyright John Nguyen/JNVisuals 25/04/2016

JDRF Westminster Palace reception.
Theresa May, Mims Davies, Amy and Kevin Winchcombe.
Copyright John Nguyen/JNVisuals
25/04/2016

CaptureJamie Reed opened the talks with a great line saying we are the people we have been waiting for and how we can make the difference. Nodding in agreement I felt like shouting WeAreNotWaiting but the introvert on my shoulder got the better of me, thank God. Further talks about research which ended with Karen Addington, JDRF’s Chief Executive, who was a pleasure to listen to and brought a lump to my throat when she proudly held a ViaCyte’s stem cell ‘sack’ which is a very exciting development.

I was very honoured to be introduced by INPUT’s Lesley to Professor Jonathan Valabhji (ational Clinical Director for Obesity and Diabetes at NHS England) and as you can imagine I wasted no time in discussing Nightscout, xDrip and the whole DIY movement. He was very interested so I offered him the chance to learn more with a proper demo which I hope he’ll take me up on. I may not like public speaking but there’s something about Nightscout which overrules all that.

The day itself was made so much better given the number of people I knew there, Ellie, Lydia, Helen, Jeff, Lesley and so many more. Meeting Carl for the first time was great and I can’t wait until our team of dozens of Diabetes Dads cycle around London overnight in the Nightrider, it little over 4 weeks. It was lovely to meet JDRF’s Karen, Sarah and Kris again and Sarah did a brilliant job of organising it. I felt we needed several hours just to chat, but isn’t that the way in these Diabetes community meet ups.

The technology is great but the people are just fab.
“We are the people we have been waiting for”
Yes. We are.

Children’s and Young People’s Network North West Education Day – #CYPNW2016

200?
Oh heck
Oh heck indeed

Back in January after presenting for my first time ever (outside of work) to a large audience of 30 at the TalkT1 event Dr May Ng and I chatted offline about my presentation. I wanted to know how the messages came across, how I came across and how it could have been better, just in case I was to ever present anywhere again. From my point of view I was so nervous it was difficult to gauge others’ impressions.
Then came Dr Ng’s little question: “are you free on 14th March?”. She was organising the North West Children and Young People’s Network Education Day and had a slot for a speaker.
“Yes. Is it for a talk or workshop?”
“A talk. 200 HCPs in Children’s & Young People’s diabetes attending for the annual education day”
200?
Oh heck.
Oh heck indeed.
I was pleased though, as Mike (of http://www.everydayupsanddowns.co.uk/) was going to be presenting there too, plus I’d get to chat with May and Francesca again, plus the chance meet some of the parent reps such as Nicky whom I’ve chatted to lots.
I’d also get the chance to include some Nightscout stuff in there too; just try and stop me talking about that eh?

Flying high on a Sunday

NWCYPsundayThe short flight to Manchester was my first ever domestic UK flight, great fun although I was quite nervous about the following day. Nervous but excited at the same time but somewhat wondering whether I’d regret my ‘yes’ to May two months earlier.
Mike and I had a great chat over a few beers and dinner, amazing that it was only the second time we’d met but it seemed like we were old friends, chatting about all the good stuff our other #DOC friends do, so many great advocates and great people. It was good to chat about some projects we’re involved in, some separately, some together.
It was funny when Mike asked me to double check his carb count of dinner as honestly I had no clue, this being one of the areas of T1 care Amy definitely takes care of herself; my memory isn’t a patch on hers.

A Day In Tweets

Before I continue I just want to point to Mike’s Storify of #NWCYP2016, summarising the day and its presentations via a series of tweets.

Dr Philip Weston

Dr WestonDr Weston’s presentation started with Autonomic Neuropathy and almost lost me within minutes; I feared today’s presentations might be too much for my little brain to understand but actually it was fascincating, and scary, but mainly fascinating.
The audience were asked to test their pulses whilst breathing in and out, and then holding and slowly releasing their breath, with the idea to see if their heart beat was changing. If it doesn’t this *may* be a sign. Read this for more info: http://www.mayoclinic.org/diseases-conditions/autonomic-neuropathy/basics/tests-diagnosis/con-20029053.
The non-HCPs I was sat next to all agreed it was one of the hardest (read: worrying) presentations we’ve sat in on.

Professor Helen Cooper

Helen2Not only leading in her field, Professor Cooper is proof that having Type 1 need not stop anyone and she’s proved this during the 50 years since being diagnosed. I find it wonderful being in the company of people with such experience and each one (Derek, Lis, Pat and now Helen) has a great and happy outlook.
Helen’s slides were gripping and fun, she spoke about learning being essential and said “there’s no end point, you are always working toward improvements”. Slides of landscapes spoke about the Mountains which resembled the high points and valleys which resembled the lows, reminding me that earth is not flat, life is not flat and it made me think about those flat CGM traces we all seek which don’t mirror those a person without Type 1 would show.

Dr Chizo Agwu

agwuDr Agwu presented about Toddlers with Type 1, something I’ve always been grateful we didn’t need to deal with: people often say they don’t know how families like ours cope, well I don’t know how families with toddlers cope.
It really brought it home when meal times were discussed, about how on earth can you give insulin in advance – something many people/teens/kids do – when you’re dealing with a toddler who just won’t eat something. I remember those days well and it was hard enough when we didn’t have insulin/hypos/hypers to deal with.
She mentioned something I’ve thought for a long time: that it is important to screen parents for depression. Absolutely correct, we’re all in it together and if the parents aren’t functioning the team is going to suffer.

Mike Kendall – Blogger, patient, all round nice chap

Mike1Mike is a natural presenter, eloquent, factual, meaningful messages and (sadly for me) too blooming funny: how on earth was I going to have the funniest presentation after his?
Mike told the room what life with Type 1 can be like, what just four blood checks a day means in reality – you’re in the dark for most of it. His analogy of life with T1 being like playing Scalextric with dodgy controls when a third of it is in a tunnel was brilliant, the room was in stitches. I secretly cursed our resident comedian and vowed to never present after him again (joking of course).
Mike went on to talk about things which help people deal with Type 1, such as the gizmos/tech and of course Social Media, which seemed to unsettle a few in the audience.
Mike’s was definitely the funniest presentation I’ve heard in a while. Or in other words…grrrrr 😉

Dr Ruth Krone

KroneDr Krone gave a great talk about the benefits of CGM and gave some real life examples of people who thought their diabetes management was excellent yet spent most of every night in a very long hypo.
She raised a very interesting point given that many are fighting for themselves or their kids to get fully-funded-full-time-CGM: Ruth told us that even where funding is agreed 50% of patients stop using CGM full time within 12 months. That’s staggering, maybe CGM is just unsustainable, maybe alarm fatigue, maybe wearing another device is too much. It reinforced my belief that having the one or two week gaps after every sensor are good for our family’s souls.

Some guy called Kev – clearly an idiot

KevAfter the tea break it was my turn.
I was nervous as hell but actually looking forward to presenting I took the stage.
I’ll go into detail in the next post but in short I gave an overview of Amy’s diagnosis, moved on to talk about the education we received and what I feel is important, and spoke a little about transition hopes and issues. Finally – and way over time – I spoke about Nightscout and OpenAPS.

Helen Thornton

helenDue to my running well over time Helen had little time left, I felt guilty.
She presented an updated web site named With You All The Wa, full of education tools for HCPs and patients, it looked great, it looked like it contained some really useful stuff for all of us.
A key focus was for individualised goals, targets and education; music to my ears.

End of a great day

I’d thoroughly enjoyed the day, even the presenting bit. Getting the chance to listen to professionals dealing with interesting and sometimes tricky subjects was enlightening. I was amazed how much I’d actually understood.
I was grateful for the opportunity – thanks May – to attend.
I was pleased to meet Nicky, Paula, the HCPs I spoke to and chat with Francesca again.
I was sad to find out I’m not as funny as Mike. 🙂

groupshot

Me, May, Mike, Helen

TADTalk2016 – Talking About Diabetes

tad1Once again the Stupid o’Clock alarm rang again and a quick check of Twitter told me that I wasn’t the only one awake and excited that today was the first ever UK day of TED style talks from people who live with Diabetes.

I was going for three reasons.
First and foremost was to meet everyone, some I’d met before, others I’ve spoken to for years and would meet for the first time. I was excited to meet Sarah (the UK’s hardest working Nightscout support person), Rob who’d travelled from darkest beyond and Anne who was one of the speakers. On top of them there were probably another 3 dozen I was looking forward to chatting with. But first it was off to meet (for the first time) Amber who we were giving a lift to – I’d worked with Amber’s Mum for 20 years and never knew she lived with T1 until Amy was diagnosed. 17 year old Amber’s relatively new to the community, go and say hello on Twitter.
Second was to listen to some great talks, four of which were from people I knew quite well from SocialMedia or indeed Real Life.
Last but definitely not least was because I was part of the Nightscout faculty, present there to be on the special stand we’d been allowed to have, to allow us to help attendees understand more about Nightscout.

The talks

Strangely, for a blog about a Talking About Diabetes event, I’m not going to talk about the talks themselves. Others have already done this through their blogs. Here’s Amber’s, here’s James’s, here’s Matt’s and here’s Anne’s.
Saving the last word for one of the organisers of this event, Here’s Dr Partha Kar’s blog.
Instead I’ll focus on Wes’s talk as it’s very dear to my heart.

Listening with a lump in my throat – The Nightscout Story

tad_westalkWes’s Nightscout story started in an unfamiliar way for me, he was taking us way, way back to Picadilly Circus in 1966, the start of events leading to the birth of Lane Desborough who is dubbed The Grandfather of Nightscout – great video of Lane talking about Nightscout here if you’re interested. Lane went on to develop monitoring software which led to the backbone of the Nightscout web sites people like us use.
I already had a lump in my throat, especially because I knew at some point soon in Wes’s talk his story would get the better of him and the rawness of emotion would come through. You could feel it in the audience who at this stage hadn’t quite worked out what Nightscout really was.
willTADWes progressed to the Nightscout story quite familiar to me – due to the presentations I’ve been giving to JDRF, Diabetes and the CYP NW Network – from the beginnings from the “7 guys on the internet” who thought “maybe 50 families” might be interested in setting up Nightscout. Less than two years later 16000 people are in the largest T1 Facebook group in the World, with 6000 more in the 27 country specific Nightscout groups around the world.
Building on the lumps in peoples’ throats Wes gave more reasons why Nightscout is so important to so many people and spoke about the only ‘cost’ to a person taking on Nightscout, that ‘cost’ being to Pay It Forward and help others. From my side it’s truly a great community, everyone is there to help others and everything is open.
Open Source.
Open Data.
Open Hearts.
Wes gave good praise to the UK’s Nightscout Faculty – which I’m proud to be a part of – and to Tim Omer for his excellent work on OpenAPS and HAPP (although Wes accidentally said ‘xDrip’ by mistake).

Nightscout Stand

pratikOne of the highlights of being on the stand was when Pratik approached me with his team and asked for a quick run down on Nightscout, so that he could understand what his patients might be using or need to know.
The stand was really busy and I spent all lunch time chatting with those who knew nothing about Nightscout, or those who knew loads but had some questions, some who were struggling with issues, some who were struggling with the concepts, some who were just interested in my family’s use of Nightscout. I was pleased to introduce James to Matt for help on his project, and to signpost people to certain web sites.
If only I’d had the time to eat any lunch!

We need to talk about H

Oh. My. God.
I’ve never felt so embarrassed.
She approached the stand by herself about the same time as Pratik and I turned my attention to him (bad move Kev!) for what I thought was a quick ‘Hi’ but turned into something much longer.
After waiting a while she said ‘I’ll come back later’, I still didn’t recognise her or know her name at that point.
During the afternoon talks I looked around and saw her sat next to Izzy and it suddenly dawned on me who was there at the stand earlier and a pang of guilt ran through me.
Hannah, damn, it was Hannah.
Hannah, the lovely young girl from OopNorf who advocates so well, whose blogged I’ve read for ages, with whom I spoken on Twitter for years, with whom I’ve spoken via Google Hangouts, whom I’d never met.
Hannah, if you’re reading this: sorry, what a twerp I am but I’m so glad you came back to say hello again.

Chatting with the reps

With more talks during the after and some question time later I managed to grab a coffee and chat with Jenny from Abbott about the London Planetarium sleepover happending that night, an event Amy and I had been invited to but had declined. Hopefully there’ll be a few guest blogs on site, coming out of that event and use of Libre. I managed to sort out a trial for Amy – which she’d previously shown interest in – so watch this space for a Libre write up from us.

What a great event

It’s hard to imagine how TAD could have been any better and if it’s run again it’s hard to imagine who could be chosen to match the great line up of this year’s speakers.
To the Doctors who set this up, Partha, Catherine, Peter, I want to thank you, it was truly a brilliant day out and a great opportunity to meet friends and help others.

Basingstoke Type 1 Diabetes Awareness Evening 11/03/16

The start of a whirlwind long weekend of diabetes events was an event organised by our clinic which jointly covers the Royal Hampshire County Hospital and Basingstoke Hospital, and their surrounding areas.

There was one last year and I found it really good, an opportunity to speak with our consultant outside of clinic walls, to mingle with other parents and grill the reps.

Truth be told I was rather nervous about attending this event.

The last time we saw the team was this fateful day back in January and my anger at the apparent complete disregard for our wishes almost saw us transfer elsewhere. So this would be the first time we met since that clinic. How would it go, would I lose it or could we still be ‘friends’?

I decided to put that last clinic down as a bad job, a mistake, a misunderstanding and walked into the room as if that clinic had never happened. And I’m so glad I did. Things appear to be back to normal although we’ll not know for sure until the next clinic.

These events are great for networking and we’d agreed to meet several people there; Steve and Becky; Matt, Sonal and their daughter who adores Amy. I bumped into Claire who runs the Basingstoke PWD group and I suddenly remembered I’m meant to be talking about Social Media and Nightscout there soon so I went over to discuss it. (*writes date in diary before he forgets*). Amy had made a little gift for Matt’s daughter who was thrilled.

The room filled with families and many of us left to listening to the Tech talk. Matt and I haad hoped to present Nightscout as part of this talk but its lack of clinical trials meant we were denied. Shame really as I think the parents needed to hear it, it would have been far more appropriate than talking about Smart Insulin etc.. But then again, there seemed to be so many families who nothing of this stuff. One person even asked if there was any truth that Reiki could help, something I consider as helpful to Type 1 as slapping, although hopefully less harmful.

Matt and I had joked that I’d ask a question after the session, that question being ‘Matt, what’s your daughter’s glucose level right now?’ and looking at his Pebble he’d reply ‘x.xx mmmol/l, how about Amy’s?’ at which point I’d look at my watch. We never did, I bottled it. It could have been funny though right?

The next session was about Transition and Amy and Jane sat in for that. I was gasping for a drink so headed out only to bump into fellow DiabetesDad and cyclist Gavin. Gavin asked if I could chat with him about Nightscout for 640g and I creased up as Matt (the 640g Nightscout solution provider) was a metre away. “Matt, meet Gavin” I mentally said Sorry to Sonal for given her husband even more support to do, although I’m pretty sure Gavin will figure it all out.

I never ventured back into the Transition talk and it’s probabably a good thing as Jane told me that apparently at the first transition clinic they see the kid first and then the parents and child together afterwards. So why on earth did they not do that with us? I just may have exploded if I’d been in there.

I had a chat to Emma, our pump rep, quizzing her on the rumours of Animas’s next pump name, release date and features. She’s good though and gave nothing away, thinking obviously that no-one in the community knows about the 2017 release date of the pump which like Medtronic’s 670g will feature a hypo and hyper minimiser. I already knew that this new pump will use Dexcom G5 as its base, we’d prefer G4 of course with its 4x longer lasting transmitter, but G5 will be awesome in this pump.

It had been a great night, lots of interactivity, lots of chats, lots of meetups and more importantly I’d not glared at the team.

JDRF Discovery Day Bournemouth 5/3/16

nnn-JDRF logo cropped_2“Call me Kath” said Professor Barnard when I introduced her to Amy and Jane. Moments before I’d wished the earth would swallow me up as moments before that Kath had recognised me (from Social Media avatars/photos) and I hadn’t recognised her. A tad embarrasing and not the best first encounter. Still we we’re lucky that Kath could make it to the event as years ago I was almost responsible for her untimely death, after telling her how simple it was to replace a broken dimmer switch. Turns out it is simple if you’ve done it loads of times, not so simple if you haven’t. Anyway, I was pleased I hadn’t killed Kath and I’ll be careful not to discuss electrics with anyone else ever again.

Back in early November I had contacted JDRF South to ask if myself and others could present Nightscout at the Discovery Day in Bournemouth. Imagine that, presenting to a Discovery Day, little old me. I don’t even ask questions at events, let alone present but Nightscout is different, you know the world doesn’t know about it and you want to make people aware. Nightscout however is unregulated and has not past clinical trials so it’s very understandable that JDRF couldn’t let me talk about it.

And JDRF had other plans for the event in the form of the very well respected Professor Katharine Barnard. It’s unusual that a Discovery Day has just one speaker but when you’ve got the chance to give the floor over to a renowned Professor then you do, you most definitely do.

I’ve been fortunate to meet and chat with several Professors this year, Simon Heller, Helen Cooper and now Kath. Here’s the thing, they’re all normal, brilliant but normal, experts in their field, but normal. A far cry from the stereotype British films and TV would have you believe.

Being a mum of a child with Type 1 the down-to-earth Kath found a very warm and engaged audience. This was no presentation though, it was almost a chat amongst friends, a discussion group, a think tank. Laughter rang around, interspersed with more solemn moments as some said things they about Diabetes which have a negative impact. But Type 1 crowds are never down for long and out poured many positives.

Kath picked up on some points and told us it’s okay to feel like that, it’s normal. This meant a lot to many of us who naturally beat ourselves up on a daily basis for not doing quite as well as we think we should, or could. In reality we’re all doing an absolutely brilliant job, but how many of us actually recognise that?

One standout for me was something I’d read before but this time in sank in properly.
Kath asked “Well controlled Type 1 Diabetes is the cause of ?????’
‘Nothing’ answered Helen in the audience.
Absolutely.
We’re all so worried about complications but are actually helping our kids tremendously.
I walked away quite proud that we’re helping Amy achieve ‘nothing’.

In what seemed like no time at all Kath’s hour was up and we all felt sorry it was all over. But then it was time for the peer support socialising and properly chatting with Steve, Becky, Matt and Sonal as well as the usual JDRF Discovery Day chat with Lesley from INPUT.

I loved this Discovery Day and if I ever get the chance to see Kath present again I’ll be there. You should to.

The 2nd #GBDOC Conference (#PWDC16)

pwdc16Last year’s first ever #GBDOC conference for people with diabetes turned out to be very successful, very popular and very enjoyable, so I was glad to hear Team Blood Glucose were going to run a second one. This year’s conference was set up to be a two-day affair at the more upmarket Colwick Wall in Nottingham.

Going, not going, going

As much as I’d enjoyed 2015’s conference I couldn’t really attend this year’s as I had commitments on the Saturday and couldn’t justify the £150 expense (tickets, hotel, travel) and I was sad to disappoint the several friends who’d hoped I’d go. Then Abbott stepped in to support the event financially making it free to attend and more importantly meaning I could attend for just one day, on the Sunday.
As it turns out my Saturday event was cancelled so I could have blooming gone for both days.

The excitement rises

As with last year’s conference my Twitter feed started buzzing several days before the event, everyone excited to finally meet or meet again people they’d spoken to daily for numerous years. If truth be told the conference itself wasn’t the draw for me at all, it was the people.

Trying to avoid Saturday’s excitement

treeAfter finding my Saturday event cancelled and disappointed that I could have attended the conference’s first day I couldn’t face the excitement on Twitter and decided to I needed to distance myself. So I positioned myself up one of my apple trees to give it a little prune, I think I may have overdone it as it took all day.

Stupid o’clock on a Sunday

A 6am start on a Sunday is unheard of but was a necessary evil to be able to arrive at Colwick Hall for the 10am start after a 3 hour, 175 mile drive.
It felt ironic that with so far to travel I was actually the first to arrive, closely followed by my good friend Nick and we went in to be welcomed by Rhodri, who helped organise this year’s event.
Nick, Rhodri, me, and no-one else.
pwdcarrival

A sea of friendly faces

People started arriving, Bob, Philippa, Sacha, Sarah, Steve, Paul, Jules&Lee, Lydia, Lis, Jo, Veeny and so many more. Chatter and laughs filled the room and it almost seemed a shame to break it when the conference started.

Open format conferences, the way forward

In open format conference style there was no agenda and it started with everyone deciding what they wanted to talk about and the topics were grouped together and sessions arranged.

Session One: MDI to Pump and Tech

A few people, Philippa mainly, had asked me to attend the conference just in case anyone wanted to ask me any tech questions regarding CGM, Nightscout or xDrip, so it made sense I’d join this session. I was pleased to hear that Tim Omer had done a great job on the Saturday with chats about xDrip, OpenAPS, HAPP and general artificial pancreas and CGM topics.
The session started off with a discussion about pumps, an intro on what they are, benefits of using one and about getting approval from clinic/CCG to get one. To be honest after 15 minutes I’d switched off a little – as it wasn’t so relevant to my situation – and happily chatted quietly with Steve whom I live a few miles away yet travelled 175 miles to chat to.
But I heard Lis say ‘Kev would you like to say something?’
‘Erm, no’ I panicked ‘I’ve not really been listening’.
The pump discussion had concluded and they wanted to hear about tech, from me, now; I really should have thought about this in advance.

CGM, xDrip, Pebbles, glanceability

Recently I’ve spoken to many about Nightscout, the ability to see your kid’s glucose values from afar, but Nightscout isn’t really suitable for an audience of adults, so I switched to talking about getting glucose values on a watch on your wrist.
Taking a step back I went through CGM and particularly how DexcomG4 broadcasts a signal out to anything which wants to listen.
Moving on to xDrip I explained the £40 DIY kit I’d built back in January 2015, which some had seen at last year’s conference when Amy demo’d it to a few.
I spoke about the glanceability benefits of having your glucose level on your watch gives and explained how it helped Amy through the day, especially being at school where use of phones is banned or frowned upon.
Nic and Alyssa asked some great questions about Dexcom and Medtronic CGM and I answered questions about extending the life of DexcomG4 sensors – obviously no-one does that right?! – and different positions they can be worn.
The time whizzed by and 20 minutes later and it was time for me to shut up.

The Afternoon Sessions

After a lovely lunch with great conversation with Philippa and a table of others it was time for the afternoon sessions although I’d decided session two would be reserved for a chat with Jules and Lee whom I was surprised to see, knowing that she was worn out by day 1.
For session three I joined in with the ‘Food’ topic, interested to hear other people’s opinions on food, different diets they used to manage their diabetes and its effects on glucose levels. After a great discussion led by Nick and with some great input from Vicky and Jo, before Paul arrived and Nick asked him to explain Low Carb High Fat and how it worked for him.
I found myself nodding with Paul’s chat so much my neck ached, he’s really got the knowledge of this completely sorted and it was a breath of fresh air to listening to someone helping others out with fact, not fiction nor flippant comment. Paul spoke in length about ketones, ketosis and diabetic ketoacidosis (DKA) and explained why people with diabetes can deal with ketones. He also answered many questions on how to get started in becoming ketogenic, truly great advice for those who were there and interested.

Post sessions chat

Yet again more time was devoted to chat with friends old and new and I enjoyed my chats with Bob and meeting Tim, Melissa and Matt for the first time, as well as chatting with numerous people who’s names I sadly haven’t remember.

It’s all over

And before we knew it the conference was all over and it was time for the long drive home. I’d had a great day, it seemed everyone had a great day/weekend.

Thanks

I’m not exactly sure of who did what but I’d just like to thank Paul, Alex, Rhodri and TeamBloodGlucose for all they did to organise and run the conference. It’s truly a great event I’d suggest everyone attends next year.
I’d also like to thank Abbott for the investment which meant that I could attend.

#TalkT1 – Changing the way Type1 care is delivered

talkt1 wordcloudFrom a small seed of an idea Dr Partha Kar has created something which has grown so well, so quickly and has so much potential to bloom into something great. He suggested a day where some of the UK’s top Diabetes professionals would gather together and talk about Type 1 and come up with ideas how to deliver care for it better. They responded in droves, pretty much everyone said yes and a date was agreed, Saturday 16th January.
Now, I feel like I’m quite the working professional, I take work home, I do work out of hours, I read my work emails and reply on days off, but if asked whether I wanted to forego some quality family weekend time and lock myself in a room with like-minded individuals I know what my answer would be. No. Perhaps I should let Jeremy Hunt know just how dedicated these people are.

An honour of an invite

Partha wanted the attendees to hear the experiences, hopes, fears and wishes from people with Type 1 and from a parent of a child with Type 1. Now why he asked me to speak I’ll never know, there’s far more eloquent speakers out there, people who don’t dislike public speaking. In truth I thought there would be only be a handful of locals there so I accepted the invite but on the day before when Partha started tweeting the list of people attending I started getting nervous. As if people like Dr May Ng, Dr Pratik Choudary, Dr Mayank Patel and Chris Askew (CEO of Diabetes UK) weren’t big enough names already also in attendance were Dr Fiona Campbell, Professor Simon Heller and Dr Alistair Lumb. The evening before Professor Jonathan Valabjhi and Samantha Jones also delivered presentations but unfortunately they weren’t there on the Saturday.
That’s quite a list and that’s just a few of the many, many more who gave up their time to help drive Type 1 care forward.

Experience of people/carers with Type 1

Laura EducationMy nerves were settled a little being amongst friends with Mike (@everydayupsdwns) and Laura (@ninjabetic1), as well as Jens (@dcarefinder).
Then I found out I was on first, crikey!
I’ll detail my presentation in the next blog.
Laura followed me and I was so pleased to see some of the same issues highlighted. Laura is a great speaker with a story both sad and shocking but told with humour. The post diagnosis feeling of ‘what I needed was some education’ felt so inline with our own experience and became quite a focus of the sessions later. Personally I find it’s so easy to listen to Laura speak so if you’ve not had the pleasure yet I suggest you seek out her next presentation.
CaptureJens from Diabetes Carefinder was up next and spoke about how care is so disjointed, we certain care being here, certain care being there and generally leaving the PWD like they are being here, there and everywhere. Jens has highlighted the need to see which services are offered by which practice too as it turned out he was going miles to get a service which could be delivered effectively next-door. It all seemed a bit mad when he explained it but being the parent of a child with Type 1 it’s not something we experience that much.
MikeMike was last, no doubt Partha was saving the best and all that. It was the first time I’d met Mike in person and it was no surprise to me what a lovely bloke he was, easy to get on with, eager to help and it turns out really good at presenting. Mike explained his involvement with the production of the most recent NICE guidelines which took years to produce. He explained the importance of the guidelines and I changed my view from one of ambivalence to one of thankfulness.

The legends set the scene

Dr Fiona CampbellProfessor Simon Heller and Dr Fiona Campbell each presented some great statistics, progress and thoughts setting the scene for what was to follow. Prof Heller explained about factors which affect poor UK outcomes and I was pleased to see the acknowledgement ‘poor availability and uptake of high quality structured training’. He concluded in the end that ‘we could do better’ which I thought was a little hard hitting to an audience of people who really care, but the nods in the audience confirmed they already knew it.
Dr Campbell spoke about improving care for patients and asked of the Doctors ‘if you don’t it for your patients who else will?’, a valid point they all knew. As someone who’s very engaged it’s often hard to remember that others sometimes don’t or can’t engage and that’s where the Doctors’ care is really needed.
The charts of complication rates Dr Campbell brought it home why it’s so important for all of us in the Type 1 community to do whatever we can to help whomever we can. Be it helping them to make sense of numbers, be it helping them to become the alleged BG-helicopter-parent that I am, be it giving them a smile or a joke when they’re struggling. We all can make that difference.
I could have listened to Dr Campbell all day, in fact I could have listened to all the presenters happily all day.

Delivering Type 1 care….but better

The afternoon saw the HCPs group into teams; 4 teams of around 6 or 7 people.
Partha set the challenge: for each team to dream up a new model of care, based the information all 6 presenters had given in the morning as well as they vast wealth of information they.
Dr Kar cleverly hand picked each team to contain people with different specialities and he handed each team a set of criteria and information about a fictitious population.
The 4 of us (Mike, Jens, Laura, me) were there to be asked questions by the teams so they could figure out adjustments to their new plan.
Let’s stop there for a minute, I guess you’re thinking that our viewpoints may not match or represent those of the wider community. You’re possibly right, I felt this pressure and I struggled to answer what I felt, as opposed to what I thought others might feel. I questioned why me, why should I be answering, I know my opinion is vastly different to many, but ultimately they wanted and needed some sounding boards for the day.
At the end of the day this was a game, but one with potentially great implications, one which proved there are great people with great ideas wanted to deliver a better service.

New care proposals

I won’t go into detail about the proposals as Partha will do that on his blog, so read and keep an eye on his blog.
Some great ideas I took from it was the desire to make it easier for people to receive the care they need, be it in a hospital or in the community.
Another one is the idea of modular education where you don’t have to commit to a whole week off work, or one day a week for several weeks, but that off being ablee to take the education module when it suits you.

Just one small hour

In reality there was just one hour for these new care model ideas to be proposed.
One hour.
Just imagine what they would be able to achieve in one day.

4 days on an I’m still buzzing

Four days later and I’m still thinking about the event, about what great promise it showed for a brighter future for my child and my friends.
I still am astounded by the sheer quantity of high-flying health care professionals Partha managed to get in the room that day and there desire to provide a better service.

Further reading

Check out Roz’s write up, Laura’s storify (inc lovely pictures of me LOL) and Laura’s write up.

Disclaimer and Thanks

As usual there’s nothing to disclaim from me, apart from the lunch and a couple of coffees.
No money could have equalled the honour I had of being there that day, of the opportunity to listen to some of the most respected Doctors in the Diabetes field.
Personally I got so much from the tweets about my presentation and the kindness showed by Dr Fiona Campbell and Dr Alistair Lumb chatting to me at the end about my presentation.

Well done Partha.
Well done everyone who attended.
Very well done indeed.

Open Loops, Closed Loops and Tim Omer’s Hackabetes Artificial Pancreas Project (HAPP)

It was a turn of good fortune that Tim Omer’s presentation to the London Type 1s group fell on the same day as the Medical Technology Awareness Week Reception at Parliament I attended. I was looking forward to this event, it didn’t disappoint.

But first: That annoying Guardian article

Having created our first xDrip in early January and using it effectively since then I was more than pleased to read that Stephen Black’s xDrip design was at the center of his system. I was intrigued, I needed to learn more and an article about Tim in the Guardian gave me that chance. Unfortunately although Tim’s article from the Guardian in late October gave a great overview of what he was trying to do the journalist neglected to print any of the information Tim gave them about who designed the different parts. I’ll be honest, this annoyed me, it’s lazy journalism and I’m suprised the author, Lord Darzi, who has a medical and scientific vocation, did not list the relevant sources.

A bloody nice bloke

I’d never met Tim before but what came across strongly was that he’s very knowledgeable about everything Type 1 tech, whether it be at Dexcom G4 or G5, artificial pancreases, insulins, many types of bolusing as well as the tech stuff, like Bluetooth, RF and NFC to name but a few. He’s also a very nice chap, more than happy to answer any question to help the person asking, really Paying It Forward to make others’ lives easier. As Paying It Forward is my current voie de vie it’s clear Tim and I would get on well. Then add a love a travel and all round geekiness and it gets even better.

A brief history of time…it’s only three years long

Tim spent quite a while going through the history which led to HAPP, from John Costik, Lane Desborough, Jason Adams, Ben West and all the other Nightscout founders and developers, then onto to talk about Dana and Scott Leibrand being the first to ‘close the loop’ – that’s where the pump is controlled based on inputs from CGM data. He spent a good bit of time crediting those forerunners in enabling him to get where he is now.

Let’s talk about Loops baby

Let’s stop for a moment to talk about about loops.
An ‘open loop’ design takes CGM data and suggests actions, the pump is never touched, or even connected to the system.
A ‘closed loop’ will actually control the pump.
A ‘closed loop’ system is therefore probably what people would see as an actual artificial pancreas, it controls the pump to reduce or increase the level of insulin given. One type of a ‘closed loop’ system is that run by Dana/Scott and follows the OpenAPS method where it constantly puts on TBRs (temporary basal rates) and will potentially stop all basal insulin delivery for a moment of time, or increase the amount of insulin for a moment of time. This use of TBRs is for me an important thing as it’s a safety mechanism, given that it is constantly monitoring, calculating and adjusting. Just imagine what would happen if the system gave a 2 unit ‘correction’ and BGs started coming down rapidly, it couldn’t backtrack. That’s not the case with TBRs, much safer indeed.
I’ve seen the results of Dana’s system, it’s very, very impressive.
And it’s not just Dana: there’s 16 people who are running a ‘closed loop’ OpenAPS system. Amazing eh?
Going back to ‘open loops’, it’s just what we do already right, using Smart Meters or our brains? At the moment us parents and T1s make decisions many times a day about what action to take to amend a glucose level that’s heading out of range. But the problem is that emotion is brought into the loop (sorry – dreadful pun) and we end up over-correcting too often. And we have to think to take a look at the BG or CGM trend and do something. An ‘open loop’ sorts some of that out by using notifications and suggestions and of course you don’t need to accept the suggestion.

HAPPy days

So where is Tim now with HAPP? It’s at the ‘open loop’ stage, where it runs nicely on his mobile phone and sends notifications to his watch which he can choose to act on or not. Although I noticed I’m not sure that everyone realised that Tim had set a couple of TBR adjustments during his demo. At the end of the demo he showed us the results with his own Nightscout page and everyone could see the 0% TBRs he’d put on, which on HAPP had suggested and Tim felt comfortable with.

A HAPPy future

Once Tim has honed his current ‘open loop’ system he will be trying to move it to the ‘closed loop’ stage.
He’s determined, he’s knowledgeable, he’s very resourceful.
I’m sure he will get there and I wish him good luck.
Moreover, I really hope to get to meet him properly one day and have time to talk.

But what about us?

I’m very behind a homemade open loop system for Amy, I’ve got no problem with that, although I can’t imagine it’s anything we’ll look in the coming months. It could monitor Amy and give suggestions as to TBRs to put on and with her knowledge of what else is going on she could choose to action those suggestions or not.
Her choice.
So, no ‘closed loop’ desire for us them.
But if it were me…I’d already have a closed loop system or be working towards it. I’d leap into this technology because after all I’m a computer programmer so I could tailor it.
Amy can’t do that and I won’t mess with her health.

As far as all of us in that room are concerned…. #WeAreNotWaiting

Further information

The Guardian article about Tim’s HAPP
Tim Omer’s HAPP GitHub

Medical Technology Awareness Week Reception at the Houses of Parliament

Parliament from inside the gatesThrough INPUT Diabetes I got a chance to get to see the Palace of Westminster for the first time AND talk about diabetes tech to anyone prepared to listen. Two birds, one stone, what could have been better. Well actually I attended another great event afterwards too – blog coming soon – , so three birds, one stone, if that’s a thing.

The Medical Technology Group’s event yesterday was hosted by John Pugh MP and part of the group’s Medical Technology Awareness Week. The event sought to get people together discussing technology used to help people manage their conditions. Type 1 Diabetes is clearly a condition which has benefitted from the tech available, in fact it’s hard to imagine a life now without it. Of course I realise how lucky we are to have all this, in fact I realise how lucky we are to be able to get insulin without issue.

Matt and I travelled up together and arriving at Parliament all suited up I cursed ignoring his advice to borrow a coat as ‘it’s bound to rain’, as it did, just as we were waiting at security under a torrential sky; so I entered Britain’s seat of power drenched and dishevelled. Through security tighter than Paris last weekend and into the main Westminster Hall and meet our friend Alistair (Samuelson) and all took a sneak peak at the MPs discussing things in the House of Commons.

On the day before I left I tweeted to several MPs from my local area: Mim Davies MP as she’s my local MP; Caroline Noakes MP as she’s a neighbouring MP and I knew she had an interest in Diabetes; Suella Fernandes MP as she’s the MP for where I work. Suella was not in London that day but I was amazed to get responses from Caroline and Mim – am I allowed to refer to them by their first name, what’s the protocol here?
tweetdavies

tweetnoakes

The event was held in the marquee overlooking the River Thames, a marquee I’ve seen so many times from the other side. Collecting my badge I heard my name mentioned, an MP was here to see me. Crikey! Already?

I spent a good few minutes speaking with Caroline Noakes MP about Amy’s diabetes tech, talking about how Amy’s pump is life changing and she’d never give it back. Caroline has an interest in Diabetes, I’ve seen this often in media articles and events, and it made explaining things a lot easier. Unfortunately though Caroline had to go to speak in the Further Education debate happening in the House so our chat didn’t last long but I was very grateful for the chance to discuss the life-changing tech Amy uses.

Off to find the insulin pump table provided by Roche where Matt, Alistair and I chatted with Lesley (INPUT) and Philippa, whom I know from the #DOC (Diabetes Online Community). Philippa had been before and this time was one of the speakers; she admitted to being nervous and I knew exactly how she felt from when I did the Nightscout presentations a few weeks ago. I knew Philippa would speak well, she’s a very level-headed, knowledgeable patient advocate and hearing her speak I felt quite proud of what she was doing and saying. The audience was engaged, people didn’t leave the room, they didn’t shuffle about and whisper, they were held there listening attentively to her story, to effectively Amy’s story, to the story of many of my friends. I thought she could do with some praise from the #DOCPhilippa speaks at Parliament

mimdaviesMy MP, Mim Davies, returned for a chat and we spent a long time talking about the medical tech which is life changing for Amy, how we get some of it from the NHS and how we self fund CGM. I couldn’t help but show her Amy’s glucose readings on my Pebble watch and go into (probably too much) detail about how Nightscout is an unfunded parent driven group with 15000 worldwide families using Open Source software. Mim seemed quite impressed with the whole thing. We chatted in general about Type 2 Diabetes as through my research I knew Mim had recently met with Jamie Oliver about the sugar tax proposal and I mentioned that this would cost people with Type 1 Diabetes more as sugary drinks are also life saving medicine when hypo.

I loved this event and would encourage you to go to it or similar if you ever get the chance.

Vive le weekend, vive Nightscout, vive la France et très bien Amy

DSC_2651This weekend saw Jane and I go away for the first time without the kids, celebrating Jane’s 50th birthday with a surprise weekend to Paris. Amy, Emilia and I had been planning this for ages, they were both happy to be left alone, probably happier than I was feeling about it if I’m honest. At almost 18 and almost 15 Emilia and Amy were more than capable of looking after themselves, Type 1 issues aside.

Thursday 12th November

As we sped into France on the Eurostar on Thursday night, I waited for the Fajita-induced glucose spikes to hit my Pebble watch with the data sent by Nightscout. I would have preferred that the kids didn’t start with the most evil of glucose-spiking meals on our first night away, but this was their choice and Amy knew it would need managing.

Nightscout for a trip like this was a Godsend, although typically our house WiFi had started going wrong minutes before we left the house and Amy’s phone had run out of 3G data allowance. Somehow a low 3.2 notification got to my phone and nervously I thought I’d check-in with Amy and request she check her level.

wpid-wp-1447652062790.jpeg

At 10:30pm, as Jane and I went out to a cabaret I bid Amy bonne nuit.

Friday

‘Bees?’ is my way of instantly making Amy laugh, it’s a Cards Against Humanity reference.
I meant to say ‘Miss’ not ‘Mid’

So I didn’t get to see the nice 22mmol she hit between 2am and 3am as the WiFi had stopped but Amy had managed herself really, really well.

Jane and I had a fabulous time on Friday, walking from our beautiful peniche for three nights on the Seine to Invalides and then to the surreal catacombs Jane wanted to visit – ugh! Then up Montparnasse at 5pm to watch the sun go down and the City of Light start to glow. On floor 59 we pulled up two seats and watched the Parisien lights appear before heading off to Bouillion Chartier for dinner.
At various times throughout the day I’d glanced at Amy’s glucose levels on my Pebble, she was doing a grand job.

Friday 13th, a night of terror in Paris

I checked my phone when we got back to the houseboat and saw this from my friend Carolyn
pleasecheckin
I checked in with Carolyn and got some twitter replies from other Twitter friends. We’d heard sirens, a lot of sirens, but had thought nothing of it.
Within seconds my thoughts turned to the kids and knowing Emilia was at work I messaged Amy.
message

Dozens of private messages had arrived via Twitter and Facebook, so I sent another message out:parispressrelease1

Saturday 14th

Amy’s glucose levels overnight had been good, Emilia’s (non-T1) on the other hand were probably another story: she’d been awake half the night worrying reading the newsfeeds.
As I fell asleep the night before we thought it was a single shooting or explosion, nothing like the devastation which actually took place. Only in the morning did we realise the extend of the night of terror Paris endured.

Logging in to Facebook it suggested that I might be in an area affected by the terrorism and asked two questions: was I there – yes; was I ok – yes. What a great idea this was, especially when I learned that Facebook friends had this information right at the top of their newsfeeds when they logged in.

Message upon message rolled in, phone call upon phone call. I put out numerous messages and set up a network of people all set to check in on the kids at various points throughout the day.
I guessed Amy and Emilia were still sleeping though; should I wake them, should I leave them sleeping? I waited a bit, I couldn’t wait long though to hear their voices.

A subdued Paris

With most of Paris shut down, hundreds of sirens going off and armed police roaming the streets I peered out of the houseboat’s windows and gazed upon an eerie silent Paris still moving. The absence of tourist boats made the river a quiet place but people were still jogging, cycling and living life on the Rive Gauche.
We spent the day walking around the silent Parisien streets using ghosttown Metros to get around. You couldn’t help but feel the sadness of the city.

Back to the kids

Even with everything going on, Amy and Emilia had dealt with everything brilliantly. We were of course remotely checking on Amy several times a day but with the odd nudge managed her glucose levels superbly over this trying period.
And the result?
Nightscout estimates over these 4 days she’d have an HbA1c of 6.0%.
Wow
4 days estimate

World Diabetes Day 2015 and Blogaversary 3

Eiffel arrivalIt hardly seems like a month ago since I wrote last year’s WDD2014 and Blogaversary 2 post but now I reflect it feels like a lifetime ago.

Three years on and I’m surprised I’m still blogging, I thought my enthusiasm for this fad would have died out by now and I suppose it has a little as I just don’t seem to write so much these days. In reality the problem is time and I’m not sure that’s going to improve any time soon.

World Diabetes Day for me is about reflecting on what we’ve achieved during the past twelve months whilst looking to the future about we’ll achieve, plus the advancements of medicine and tech which help everyone with Type 1 Diabetes.
(I’m posting this early as I’m away for the weekend.)

Motto for the last year

I can sum up the last 12 months in three easy words: Pay It Forward. I’d like to think this has always been my motto but never so much as it has been recently. It’s important to me, it keeps the world spinning in my eyes, it makes may days brighter and when in (thankfully rare) darker moods it’s the only thing which gets me through the day.
So here goes for a few moments of the previous year, but first how’s Amy been getting on?

Amy’s worst moment with Type 1 – Where’s Jacques?

Quite recently we visited Versailles so it’s apt to think this last year was the best of times, it was the worst of times. Unlike in Dickens’s Tale of Two Cities there’s been no revolution but we’ve certainly had two episodes which came too close to kissing the guilotine for my liking. August was marred by two moments when we just took our eye off the ball and by rights Amy should have gone to hospital to quickly get her out of her nose dive towards diabetoketoacidosis. I don’t feel that proud that I didn’t take her in but we wanted to spare her the trauma, but she was scared, we were all scared and yet the first occurrence really proved what a great team our little family unit is, all pulling together for the good of Amy.
That first near-DKA occurrence was a dark moment for me particularly, I’ve never felt so helpless but at the same time the education everyone in the #DOC has helped me attain meant I knew what was going on.
It turns out I can’t even read this tweet without welling up, it’s raw:
nearDKAtweet
Whilst I got lots of advice from the #DOC it was really only Andy Sherwood who kept me going through this as without WiFi or data I relied on SMS and I thankfully had Andy’s number to hand. Thank you Andy.
Anyway, enough of this dark rubbish, let’s move on.

Pay It Forward – with the Pharmacists and Peer Support

In December last year I got the opportunity to help the next generation of Pharmacists learn what living as a family with Type 1 diabetes meant. I thought it went well but maybe not, I’ve not been asked back.
I’ve continued my role as Peer Supporter for Diabetes UK in a slightly lesser manner than before but still get to help people via email. It’s a vital service but I just couldn’t commit any time to answering the phones anymore.

January: time to say #WeAreNotWaiting

On January 1st, in ‘new start’ mode I pulled the trigger and ordered up the components needed to build xDrip and get Nightscout up and running.
10 days later with it up and running I realeasd my first blog about it: #WeAreNotWaiting thanks to #xDrip – Introduction.
I can’t possibly explain it here so read the above article or any of the several #WeAreNotWaiting posts I’ve done.
The xDrip blog articles went wild, especially in the States and are still used by many to introduce xDrip and Nightscout to newbies. I’m quite proud of that.
My involvement with Nightscout and xDrip moved on a stage when I was asked to be part of a team presenting Nightscout to many families at a conference recently. See the posts here and here or watch the videos of the presentations.
My involvement with Nightscout is contuining at a pace and I hope January’s blog(s) may prove interesting and exciting.

March: the #GBDOC conference

The first ever ‘unconference’ organised by Paul and Midge of TeamBloodGlucose was simply brilliant.
The opportunity to meet with several of my online friends was excellent and meeting Veeny was a highlight for me but the effort Jules put in to be able to attend made her the star of the show for many of us.
Later that evening we would learn that toothpaste is an unsuitable hypo treatment. It’s a shock eh?

April: Amy nails a week in Germany

Amy spent a week in April on a student exchange trip to Germany. Not only did she nail her glucose levels sufficiently to have a great time away – some feat considering the family lived so close to the Haribo outlet shop – but she spoken German all the time, one of the few to do so, and nailed an A in her GCSE which she took two years early.

May: Conferences, Public Speaking and Interviews

May was a big month. First, Amy and I spoke a little at the National Paediatric Team Meeting in Birmingham. A super scary time speaking in front of 200 health care professionals.
Then I had the most wonderful time with Chris, interviewing Dr Stephen Ponder about Sugar Surfing on behalf of Diabetes UK. Dr P is undoubtedly one of the nicest people I’ve ever met.

June and August: cycle, cycle, cycle

In June I undertook the biggest cycle ride of my life, cycling from London to Paris in a self-organised and unsupported trip with friends, raising £600 for INPUTDiabetes. The full self-organised London to Paris trip blog is available here if you fancy doing this yourself.
In August I rode the longest ride of my life, 100 miles, supporting JDRF and raising £430 in the Prudential Ride London Surrey 100.

And finally, some statistics

My blog has never been about statistics however it’s really nice to see them improve. Well I say improve, they’ve rocketed since blogging about Nightscout and xDrip.
In the first year the blog had about 11,000 hits.
In the second a huge increase to 27,000 that year, over 38,000 in total.
In the third, because of xDrip, it’s massively increased to 52,000 hits, and a grand total of over 90,000 hits.
The key thing about these numbers is that people are finding the information that matters, and that’s all that matters.

#PayItForward

Presenting Nightscout at CWD FFL 2015 – the videos

This article contains the three presentation videos recorded at Children with Diabetes Friends for Life 2015 at Windsor on November 1st 2015. They are available on the Nightscout UK YouTube channel individually, or as a playlist.

Introduction

Here’s an uplifting video previewing the Nightscout conferences taking part in the Fall Autumn of 2015.

(Watch on YouTube)

Part One

A moving introduction to Nightscout from Wes and then the ‘What Nightscout Means To Me’ presentations from Kate and Jesus.

(Watch on YouTube)

Part Two

Myself, Tim and Stuart give ‘What Nightscout Means To Me’ presentations. Kate introduces Nightscout web pages, apps and CarePortal, Stuart introduces the advanced options, I introduce the reporting options, then take the mick out of Wes’s Apple Watch a little before reminding everyone that Nightscout is DIY, no-one will do it for you.

(Watch on YouTube)

Nightscout Workshop at CWD FFL 2015

You might like to read the article about the morning’s presentation of Nightscout to families at the CWD FFL 2015 conference if you’ve not already done so.

Afternoon Presentation/Workshop

Nightscout UK teamIt seems the afternoon session was the only one actually listed in the FFL programme so we had more people, about 30, attending.
Like the morning session they were really attentive, most of them knew Nightscout already, they wanted it, they needed it and they thankfully had a lot of questions.

 
First we gave the obligatory warning that Nightscout isn’t an approved thing, it can’t be bought, it’s not something anyone would build for you, you should never make a medical decision based on information shown etc. etc..

After debunking the myth that this was a solution only available to nerdy geeks we showed the routes into Nightscout from a ‘How Do You Get Your CGM In The Cloud‘ article, quickly dismissing some of the USA-centric options like Share and focussing on using a Dexcom receiver, xDrip device or using the uploader for Medtronic CGM (not 640g).
Kate showed the original ‘rig’ where a phone is directly connected to a Dexcom receiver as this is what her family first used, but now they use xDrip.

xdrip circuit
xdrip1xdrip2

I presented the xDrip wiring diagram and hopefully quickly busted the myth that it’s hard to build. For me this was the easiest bit to present as I knew most of the audience just got it, for some the penny dropped during the presentation, for some it just reaffirmed what they already knew and thought.
People were keen to see some model xDrips so I passed my two spares to members of the audience, whilst Tim demonstrated the tiny one in a TicTac box which he wears on a band around his bicep which he prefers to do so he doesn’t forget it.
Jesus talked about the components required to build MMCommander to get CGM data from Enlites (for Medtronic 530 and Veo pumps) into Nightscout, which received a lot of interest from the audience.
In the last slide Kate spoke about the different cloud services which were required for a standard Nightscout installation: Azure, for the web site; MongoLab, where the data is held; GitHub, where the code is for everything.

Workshop session

Nightscout afternoon sessionsAt the start of the workshop session we split into two tables, one for Medtronic with Jesus, one for Dexcom/xDrip with Kate, Tim and myself. Stuart meanwhile helped one of the audience members sort out issues with her set up, she left with it working properly.
I spent most of my time showing the two of the different xDrips I’d built, fielding questions about the components or how to build them or issues I faced.

It’s hard to imagine how the session could have gone any better: people seemed to get the answers they needed; people seemed engaged; many said they would order the components that night and set up Nightscout as soon as possible.
From my point of view we had achieved our goal, that one family walked away from the presentation/workshop having discovered something they could set up to help them. But in this case it wasn’t one, it was probably 20 or 30.

Presenting Nightscout to Families at CWD FFL UK 2015

Nighscout FFL, Kev, what nightscout means

Building a team for Old Blighty

Back in September Wes from the USA based Nightscout Foundation gave me the honour (yep Wes, there’s a ‘u’ in honour 🙂 ) of asking me to join a faculty team they were having at the Children With Diabetes Friends For Life UK conference which took place last weekend. Wes was gathering a team of Nightscout and xDrip users together with the aim of showing families what Nightscout does for us.

Nightscout UK team
Left to right: Stuart, Jesus, Wes, Kate, Kev, Tim

And so the team was formed with me, Wes, along with Stuart and Kate whose kids have Type1, and Tim and Jesus who both have Type 1 themselves. Jesus is somewhat of a God (bet that joke hasn’t been said before eh Jesus?) in the community and flew over from Spain for the weekend.

Then Wes dropped the bombshell, he wanted us to present Nightscout, not just give 1-1 advice and info at a stand. Present! What? Me? “Erm, okay” I said very tentatively. Being on holiday for the Saturday I could sadly only attend the Sunday but the planets aligned as that was the day the presentations were (“Oh great!”).

Panicking about presentation slides

At 5am the alarm sounded.
I present often at work and am somewhat reknowned for having whizzy slides full of colour, animation and more importantly eye-distracting graphics which take the focus off of me, but I had a problem as I would have no time to prepare anything as I was on holiday. So at 5am on the Sunday I woke in panic and managed to cobble stuff together and from there on in I felt relaxed, I had a plan, I had slides, I was ready.

A team as one

Nightscout team, anonymousNone of us had met before but after arriving at Windsor and meeting everyone I felt like this was a team which had been together many times, we were so relaxed together, sharing jokes, poking fun, and just understanding everything each other was talking about.
Our first task was to decide who was doing which bits and I found myself volunteering for a lot more than I thought I would. Perhaps I wasn’t so nervous after all.
Wes posted a photo: we were no longer anonymous.

Morning presentation – What Nightscout means to us

The morning session wasn’t advertised in the programme, just on flyers at our stand so we had less than 20 people there, but that was great for my first foray into public speaking. I’ve always felt that if anything I say or write opens the eyes of just one family then I’ve done my job because I know that family will open the eyes of another.
Due to enthusiastically overrunning our slide timing the session really turned into a What Nightscout Means To Us presentation.

Nightscout, Wes opening speechWes opened the presentation with a heartfelt introduction to Nightscout and what it mean for him, it was very moving, speaking about how his son’s T1 diagnosis at 12 months affected the family.
Kate spoke about how Nightscout “makes the diference” and spoke of how the “glanceability” of her glucose readings on a watch reflects what her driving instructor told her “nothing should ever come as a surprise in your rear view mirror”, she’s aware of what’s happening before it escalates into a difficult to deal with hypo or hyper.
Jesus’s story to me is amazing. He’s a parent but he is the T1 and he developed software for himself to monitor glucose readings. One day he heard John Costik’s Nightscout story and within an hour sent him an email to let him know that Jesus could get readings from Medtronic Veo CGM and could amend it to work with Nightscout. I can’t begin to tell you how moved I was by Jesus’s story of selflessness.
Tim’s story was another good one, speaking how great the community is and how Nightscout has pushed the boundaries and helped Dexcom release Share ahead of its original plan. Having Type 1 for 32 years he had a Dexcom receiver but built an xDrip and is pleased to realise the much better calculation engine than that available in UK Dexcom products, with the added bonus of extended life sensors. (USA has the ‘505’ software and Share but this has not been released in the UK.)
Stuart spoke about how Nightscout lets him know “at a glance whether to react or relax”, which along with Kate’s “glanceability” sum up Nightscout very well for me. With his daughter being 13 she is starting to manage her own diabetes and diabetes allows Stuart and his wife to pull away more and only intervene when required, meaning his daughter finds it less intrusive.

My presentation: BG’s are not as important as Snapchat or 5 Seconds of Summer

Nighscout FFL, Kev talking about watchesWhen my turn to speak arose I felt calm, I just wanted to get my story out there, I was somewhat surprised I wasn’t a bag of nerves.
I spoke about how to a teenager almost nothing was more than important the weekend lie-ins and that Nightscout means I’m not worried about whether she’s too low or too high when her bedroom door is closed till noon.
“BG’s are not as important as Snapchat and 5 Seconds of Summer” was my next line. Amy wants to be a teenager and do teenagery stuff like listening to her music and chatting online with friends, probably about the music they’re listening too…and boys…and boys who are in bands…like 5SOS. I mentioned that whilst cooking I can glance at my watch and decide whether I need to intrude on Amy to ask for an early BG check so we can pre-bolus, or adjust to get her at the lower end of her range before eating. Like Stuart’s daughter this is less intrusive for Amy than before Nightscout.
I explained how I use Nightscout to “nudge” Amy. With my range set from 3.5-14mmol and Amy’s set from 4-9mmol (her choice) I know that she would have had an alarm if over 9 but if she reaches 13 for example it’s probably because she’s not noticed an alarm, so I give her a gentle nudge to do a check or make an adjustment.
My key message though was how Amy’s HbA1c’s had changed through her time with Type 1:
hba1c history

Nightscout and how it works

Nighscout FFL, Kev, nightscout reportingKate went into the basics of Nightscout, the website, the browsers and phones and what appears on the screens and gave an overview of CarePortal. CarePortal is where kids and school carers/nurses can enter information about carbs, insulin and many other things into Nightscout which can then immediately be seen by the parent/carer, which in turn means that worries about Hypers may be negated if the parent can see insulin has been given, meaning in turn no panicky phone calls to school.
Stuart expanded on this talking about the ‘pills’ which appear on the screen and show you values such as Insulin On Board, Carbs On Board, and the Bolus Wizard Preview, which based on settings you’ve entered gives you an idea what sort of action might be required to get the child back in range. Stuart stressed that this is only for an idea of what to do and shouldn’t be used without deciding on whether that action is appropriate or not.
Nighscout FFL, Kev talking about watchesI presented about the reports Nightscout gives, comparing them favourably to Diasend which I rarely use now. One report gives you an estimation of A1c and ours said 6.8% prior to the last clinic when Amy got her 6.7% result.
Just for fun us Pebble watch users decided to do a speed test with Wes and his Apple Watch, to see how quick we could all glance out our kids’ glucose level. It took Wes a fair bit or time.

Finally

Finally, it was lunch time, and as the engaged audience left the room I knew the team had done a good job and we eagerly awaited the afternoon session which would include presenting solutions and a workshop where we could solder some bits or help get people going with their Nightscout solutions.