#TADTalk2017, Nightscout and that blooming Diathlete

tadlogoEither you wish the world would swallow you up or you laugh it off, as you should.
Yep, that moment had happened again where Gav (@Diathlete) talks about running from John O’Groats to Land’s End, shows the photo of the support group including me, and then tells everyone he can run faster than I can cycle. It’s true.
Of course I don’t mind at all, cos Gav saved me: if he had not run 900 miles and needed a little support which I then gave for 4 days, then I would never have cycled 100 miles in 2013. Which led to finding something I love to do, cycling 2000 miles each year since, completing 100 miles/day rides, cycling to Paris twice. Thanks Gav, that’s down to you.

Yawn, yawn, yep, yep, rabbit, rabbit

The day had started early when at 6-something-or-other a.m. I picked up Kelly (@diabeticqueen1) who was my travel companion for the day. Like Chas & Dave’s famous song – Rabbit – she didn’t shut up the whole way, she was clearly as excited as half of my Twitter timeline was to be attending #TADTalk2017.
I didn’t mind at all, we had a lot to talk about what with various presentation collaborations, our Sugarbuddies peer support and our cycle together to Paris. I was keen to introduce her to lots of people I already knew and it made me smile when all I heard all day was ‘I love her/him’ as each speaker took their turn. Positivity is certainly the way forward.

A set of family speeches

Although we’d not met in real life before when Jen took to the stage it felt like I was watching a friend or member of my family up there on that stage, someone whose story I knew a fair bit but whose full story was unknown to me, a story which made me feel a little sad, a story which showed grit and a great outlook on life. The same happened when Gav floored us with his achievments, Roddy amazed us with his expeditions, Mel’s sporting achievements and finally Adrian with his story of never really speaking about Diabetes – he’s really turned that corner now.
Everyone so humble, so grounded, so unaware of just how bloody brilliant they are.
And they really are.
Loads of others have blogged about the speeches so take a look at their blogs: here, here, here, here, here.)

Three things which I thought were awesome

Let’s face it, the whole event was freaking awesome – hopefully Catherine, Peter and Partha know how grateful to them I am – and we are – for the event – but they were some stand-outs for me.

Three things which I thought were awesome – approachable people

Some of the people who attended not only went but made themselves approachable to the masses, and I’ll highlight Karen Addington, Chief Executive of JDRF UK. Let’s not forget that Karen herself lives with Type 1 Diabetes but it was great to see her there, and get the chance to have a good chat. I’ve noticed this before at Diabetes events, that CEOs and Directors of the charities attend and make themselves approachable. I’ll always remember being cheered on cycling up Newlands Corner hill on RideLondon 2015, only to find out later it was one of JDRF’s Directors.
At TAD we could freely have a chat with not only Partha and Catherine, but Bruce Keogh, Jane Cummings and Stephen Dixon too.

Three things which I thought were awesome – free beer

Diabetes UK’s drinks event after TAD had finished was absolutely brilliant and I want to thank them for doing that, they didn’t need to, but it really extended a great thing of the day…being able to talk to each other.
It gave us all another four hours or so or chat with our friends, some old, some new.
Thanks to Michaela and Sally for organising this and for the D:UK leads for allowing it to happen.

Three things which I thought were awesome – helping people with Nightscout/WeAreNotWaiting

I’d asked Partha and Catherine if Nightscout could have a stand at TAD, as we did the year before when we were supporting Wes, Nightscout USA’s busiest advocate.
Without hesitation they agreed.
Normally HCPs would say no, well let’s face it they can’t officially support something which doesn’t have the backing of clinical trials, and by some is seen as hacking.
I understand and expect the ‘no’s’ but it was lovely to have a ‘yes’ and I’m pretty confident I know why they agreed: ultimately they know Nightscout/OpenAPS/LOOP make a lot of difference to their patients and they want the best for their patients.
Us Nightscouters had travelled far and wide primarily just to be at the stand, yes we wanted to hear the talks but above all us we went to help people.
Rather than just Nightscout we opted for a #WeAreNotWaiting table and were delighted for Alasdair to join us with his OpenAPS and LOOP kit.
We had 5 Nightscouters and 2 Loopers present and each of us ended up speaking to a good few people, some learned about Nightscout for the first time, some had their nerves about setting it up quashed, many decided to set it all up soon.
For more info about Nightscout, either visit nightscout.info or join the Facebook groups: Nightscout UK; CGM in the Cloud; Nightscout for Medtronic.
For more info about creating a DIY artificial pancreas either visit openaps.org or join the Facebook group Looped.
For more info on getting your Dexcom G4 data available on a watch or website take a look at this page.

From Night-crawler to Day-walker, a Diabetes Mum’s story, by Lucy Veal-Johnson – Part 1

I met Lucy and her family about a year ago, at an event organised by the local (South Hampshire area) families support group, Seahawks. We’ve spoken quite a bit, through highs, through lows and one day I offered her the chance to tell her story.
Here’s part one of a three part story.

sienna-for-blogLet me set a scene.
The date was 22nd April 2015, sat outside in the garden with some friends and my mum having a nice sunny chat over a few cups of coffee. Sienna was our youngest of four children at 2 years old she was tottering about tripping over her own two feet like a drunk 2 year old whilst playing with her toys. She had been under the weather for a couple of weeks and had noticed a change in her but couldn’t yet put our fingers on what was laying beneath. In my gut I knew she wasn’t right but was waiting for something more poinient to come through so I could say “yep, that’s it, that’s what it is” But nothing as frustrating as it was I was a mum of four, so yes experienced in the art of motherhood. The tripping over stood out as well as going off her food only wanting biscuits and drink, coupled with a bad bout of thrush. She had suffered with this on and off since birth but this one was taking an age to go. The next day day she went with her child-minder whilst her father and I went to work. I had mentioned to her that our little one wasn’t right but couldn’t put my finger on anything but if she needed me to get her I would. We didn’t hear anything all day until I picked her up on the school run. She went on to say that Sienna only had a couple biscuits and drank like a horse but most definitely wasn’t right and agreed with me that she could also not put a finger on it. She also had experience in the art of motherhood as well as achieving the minding of children certificate. With that I made the decision to ring the doctors and get her booked in for an emergency appointment that eve, explaining that she wasn’t right at all but really needed to be seen.

Trusting my instincts

My instincts were right.
As I exited the school gates she started going blue, I had already phoned a friend to help look after our other three whilst I took her to the doctors appointment. After I had told our doctor what was going on he went to ask for advice from the nurse but had first asked me if he could get her to perform a blood glucose test. Desperate for anything to help our little girl I replied with a yes of course.
Test 1 = HI on the testing meter but I had no clue what that meant so the nurse asked if she could do it again just to make sure but this time explained what it was for and why she was testing again. It slowly sank in. She was testing Sienna for Type 1 diabetes.
Test 2 = HI but this time the nurse turned around and talked to the doctor first before turning to me and said that our little Sienna was type 1 diabetic and the testing meter only goes to 32 before it cannot read sugars higher than that. The nurse exclaimed that Sienna needed to go to hospital to find out how ill she was and that she would be on injections but also that within 12 hours she would be feeling slightly better. The doctor in the mean time had called an ambulance and had come back to tell me that I should let her dad know what was going on. The next half hour was a bit of a blur with me texting close family to tell them in short hand text that Sienna was being rushed to A&E because of T1D. I felt like I was in a whirlwind, as the ride to hospital neared everything all jumbled into one.

Hospital arrival

Upon arriving at the hospital she had two drips in each of her hands and numerous blood vials were being taken. I had to literally pin our struggling, kicking and fighting 2 year to me with all my might. Dad arrived along with a close friend of the family,I was relieved but very shaken. Pinning her down really got to me. The consultant came in once Sienna was more settled and fully explained what T1 was and how it would affect her, how the hospital would help and who was going to get involved in helping her recover. For me, the next three days were a blur, all I knew and understood was that our other children were with our friend and that my little girl was hurting inside and I couldn’t make it better for her. Any mum would feel the same, no-one likes seeing their children in pain and just sitting there doing nothing, I felt hopeless.
Part of being Hyperglycaemic is that she loses all sense of normality, she becomes angry which is understandable, they say it’s like having a hangover with the headaches, feeling and being sick, wobbly like she was almost stagger like. And for a 2 year old to feel like that hit both her dad and I like a ton of bricks. She didn’t want me, no cuddles, no hugs, no soothing, NOTHING. The more I tried the angrier she was. This was totally a shock to us as she was always a sweet caring little dink (her nickname being the smallest and the baby of our family). Paediatricians, Diabetic nurses and dietitians, psychologists and consultants all came to give us individual talks on how they would each be helping Sienna and us come to terms with this life-changing condition.

sienna-for-blog-2
Even blood glucose strips need some love

Filling up with information

The injection training started on the third day when Sienna was well enough and coherent enough to tolerate being injected.
Both her father and I had to perform finger pricks every 2 hours, give 5 injections to Sienna and be confident in carb counting before being allowed to take her home. The team were fantastic in working with us for us to be able to take care of her at home. Our minds were stacked full of information, Yes with diabetes there is a lot to take in and a lot that can affect her levels.
Friends asked me later on how do I hold all that info? I said that I feel like we have completed a five year degree course in type 1 diabetes in 5 days and it just comes, there’s a little life at the end of it so you cant forget.

Feeling overwhelmed

Being told to give injections that could potentially be life threatening either way if you get it wrong was an over whelming feeling too. Too much insulin and you overdose and her levels will drop too low taking her into Hypoglycaemia. As she developed T1 at a young age she has no Hypo awareness, this is also a worry. The feeling of this is likened to an emotional female at the worst time of the month with the crying and the hunger. Her little brain is being starved of the glucose it so desperately needs making the brain function inept. Too little insulin and her sugars swing the other way, they would rise way up to the sky (sky/ HI). I took two weeks off work where I was a full-time lifeguard pool manager working shifts and my partner was working as a technician I ended up working for another eight weeks before the 2 hourly night & day testing took it’s toll. I constantly saw numbers on everything and soon became a genius in knowing the carbs in a slice of bread or a fudge bar to a small banana. You see, diabetes doesn’t sleep or take a break which meant we couldn’t either. We couldn’t just say we don’t want you today please come again tomorrow, it’s here to stay. However much I wanted to say just DO one.

Nighttime Ninja

I soon became the master of the night, The illusive one, Yes I became “THE NIGHTTIME NINJA”. Testing blood sugar levels in near complete darkness, I have the eyes of a hawk and the stealthiness of; well some kinds of demented ballerina Have you ever tried dodging Lego in the dark, delicately tripping over dolls and teddies with only the light of the blood meter to light the way. Then to use the meter light to light up the finger pricker to prick your precious ones finger for the umpteenth time, to then use it to light up the smallest drop of blood ever like some kind of spy. Mission impossible was only complete if her sugars were in range. If not we gave our little one a Jelly baby, yes a sweet in the middle of the night, kind of goes against any normal thinking but this one little jelly baby can and has saved her life on many occasions, all hail the jelly baby. Our little one safe and definitely soundo when I left to go back to bed and rest until the next alarm goes off in 2 hours. This was a mean feat. I can be sleep deprived longer than I thought I could and still get up and do a normal day. I think they call it a mombie, but after six months I was very, um exceedingly, no wait extremely tired, exhausted, worried and scared.
I cried more tears than I have drunk hot water. I tried to buck up my ideas and tried to be brave but no matter how hard or how brave I felt I was so scared that our little one won’t wake up in the morning. Mornings for me are special when I see her stir or take a breath, (that’s also normal to feel like that, but it does get better, a lot better. Over time I got used to walking the floorboards at night. I was now a master in the art of Night Crawling, I had passed the Lego and doll tests, I knew which floorboards to miss, I new how to give a hypo treatment and correction injection without fully waking our little tot. Not once did I ever test the wrong child due to tiredness and survived to do it all again the next day or that day depending on which side of the clock you’re on I suppose.

I am not alone

I very quickly joined a Diabetes discussion forum on Facebook.
I was not alone.
The parents all gave their welcome speeches in their own way and I quickly realised how many little tots there were all over England, Scotland, Wales. I quickly learned that advice can be gained at any minute of the day, every hour of the day and night. I read other parents T1 Journeys with their little ones just like your reading mine now.
“I couldn’t inject” one friend said to me, another said “it could be worse”, “so she can’t have sweets now” every one of those questions really grated but one thing was for sure I had my FB T1 group to vent to. A HUGE group of parents of children with Type 1 diabetes, they ALL got it, they knew what I was thinking, what we were going through as a family, they knew the right words to say anytime of day or night. We like to share every little bit of happiness and excitement and achievements as well as go through the journey of Lows, the hospitalisations for some little ones. But the journey’s we’ve had we take together. I’ve never met any of them/you but because we all talk so much it’s like I have known them for an age.
For them/you this is my own personal thank you.
Thank you for being there through the good times and the bad.
Thank you for giving that extra little bit of advice at stupid o’clock in the morning as well as sharing our HIs and LOs 😉

At least night time testing provided some comedy moments
sienna-for-blog-3
 

QiC Diabetes Awards 2016: being a Judge

QiC Diabetes logo“No thanks, it’s not really my sort of thing” I said on the phone a few times to Emma, “but if no-one steps forward I’ll do it”.
Emma was organising the Judges for 2016’s Quality in Care (QiC) Diabetes Awards and was seeking to get a non health care professional (HCP) person on each of the three award judging teams.
No-one else stepped forward.
“Damn it” I thought, never wanting to backtrack on a promise.

QiC Diabetes Awards: a bit of background

The QiC Diabetes Awards is a programme designed to award some of the very best projects, initiatives, people and groups within the UK Diabetes arena. 2016 sees it celebrate its sixth year.
This year they were 11 categories, 8 of which were for projects and 3 were for people. See the list here.
Many of the winners and finalists from previous years are featured on the QiC Case Studies page for others to view and learn from, maybe taking on the initiative/project or adapting it to suit their organisation.

What the judges do

This year the judges were responsible for just 7 of the project categories and these are split across three judging teams.
Bob Swindell, Andy Broomhead and I were the non-HCP people and we each took our place on the teams which were chaired by Simon O’Neill (Diabetes UK), Dr Paru King (Derby Hospitals) and Dr Sheridan Waldron (Children and Young People’s National Diabetes Network) respectively.
Each team had to decide on the winners, finalists and commendations for each category.
My team had two categories to review – of course I’m not going to let on which ones.
After all the applications are finalised they are sent by email to each judge who then reads (and re-reads in my case) each application scoring each section against a defined set of criteria. We received them on 14th June 2016.
You have about a month to do this before the results grids are sent back to the organiser, who collates everything ahead of Judging Day. We had to send ours back by 11th July 2016.
After Judging Day you sit back, relax, and look forward to attending the QiC Diabetes Awards evening which you automatically get an invite to.

Paperwork, paperwork

I was sent an email with all the applications for my team’s two categories, 25 applications.
“Well, this won’t take long” I thought, incorrectly.
25 applications, most of which had 10 sides of A4. I don’t think I was prepared for the amount of paperwork I had to read through, and as someone who doesn’t really read it was all a bit of a shock to the system.

It’s 2016, why did I agree to be a judge this year?

If I’d really thought this through I never would have agreed to be a judge this year, another year maybe, but not this year.
June 2016 saw a month long feast of football in the EUFA Euro 2016 finals.
Early July saw the Tour de France start.
It turns out for me these were both far more compelling than judging applications for an awards programme.

Don’t judge my judging process

I guess everyone’s judging process is different, I’ve never done it before but my process worked for me and I’d improve it if I were ever to judge anything again.
On average I took at least one hour per application and judging it on its merits against the framework proved not much of a problem, but after doing that I needed to make sure it was fairly judged against the others. On the two days where I locked myself away for 6 or 7 hours this was much easier, but with football and cycling to watch this wasn’t so easy.
I made notes about every mark I gave for every section for every application as I was worried about being questionned on Judging Day. Turns out I needn’t have worried so much but making notes helped me through the process.
Finally I’d done them all and emailed Emma my completed results grid, merely seconds before the deadline time. Which was pretty much like my whole life at school.

Judging Day beckons

I was very nervously excited to go to Judging Day, at Chandos House in central London.
As a non-HCP and clearly the least educated person in the room I felt nervous about stating my views, holding my ground, challenging others and being a valuable member of the team.
But this would be the first time I’d ever met Becky or Anne in person, after years of chatting on Social Media, and I was really excited about that. Plus I was looking forward to saying hi to a few people I’d met before: Simon, Andy, Kate, Phil, Mayank and Bob.
The judging day itself was good, fairly low key with great open discussions.
The wine, cider and meal out afterwards with Anne and Bob was even better, even if I did later that evening fall victim to Bob’s mission of upping his step count for his One Million Steps Challenge for Diabetes UK.

Making a difference

My worries about making a difference as a non-HCP were unfounded. My views were encouraged, listened to and respected and I left feeling I’d made a real difference, raising awareness about some things, highlighting inconsistencies the HCPs hadn’t noticed.
I was initially worried about being seen as a representive of others in the community – I’ve seen some pretty negative comments to this effect about others – but I soon realised that I’d been invited myself, not as a ‘patient rep’. Otherwise I’d have refused to join in.

Would I do it again?

Yes, I would, without a doubt.
Along with the caveat of not doing it in a year which features a major football tournament.

DISCLOSURE
No-one had any input into the writing of this article other than me.
I received compensation for my time spent being a QiC Judge, for the hours spent doing the reading, taking the day off for the Judging Day, and travel was also paid for. On the plus side I’ll be using this exclusively for Amy and her diabetes stuff.
I also got a free lunch and Lord knows I love a free lunch, it was a damn fine meal and the company I had was pretty good too.
I also got a no-expenses-paid invite to the QiC awards on 13th October where there’ll be cake and I intend to up my ‘wages’ by consuming vast quantities of it.

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.

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

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.

Pop4Diabetes 2015 with DRWF

pop4A couple of weeks ago Jane and I were invited to attend the Pop4Diabetes ball as a thank you from DRWF for things I’ve done for them. Claire and Lee from DRWF hosted us for the evening, alongside other volunteers such as Lynwood who does a lot of fundraising and other events for them.

What made the evening more special was that my Dad and step-mum Liz were also invited by Claire and Lee. My Dad has had Type 2 for quite some time but it was only Amy’s diagnosis which spurred me on to learn more about his Type 2 and ultimately to get him to learn more about it. Since the DRWF Wellness Day in 2013 Dad has volunteered for DRWF, helping them with mailshots, poster deliveries and many other things. He’s given a good deal of time helping out for the good of others so it was lovely to see him be invited to attend the ball too.

Pop4Diabetes is an annual ball like event, spearheaded by Iris Board who’s son Shane was diagnosed with Type 1 Diabetes several years ago. Shane is an actor/singer/presenter who has released various Type 1 oriented songs over the years, including the recent Find A Cure.

The event is frequented by celebrities past and present and this year Anita Dobson – Angie from Eastenders – was there supporting the event, along with internet star Jack Jones.

Music and dancing is the theme behind this event and it was great to hear songs from Shane and others, as well as songs and dancing from Naomi Bowring, a talented dancer/singer and Miss England candidate. There was dancing from local groups, some made up of adults only, others made up by kids, as well as a type 1 choir who sang a song.

Pop4Diabetes also gave out some awards to a few kids with Type 1 who had achieved good things over the years. It was lovely to see the smiles on the kids who received these awards and the pride beaming on theirs and their parents faces.

I really enjoyed the event but for me the highlight was being able to spend some time with DRWF and their supporters, and especially being able to chat all night with Lee (DRWF), chatting through all topics Type 1 related.

Pop4Diabetes was a great event, Iris has done well to pull it together and raise thousands of pounds yet again for charity.

The Bournemouth Echo did a nice write up about this year’s Pop4Diabetes event if you would like to read more.