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Dana RS trial conclusion – it’s the one Amy wants

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danarrs_03Back at the end of July Amy went on a trial of the Dana RS insulin pump, a trial which was due to last four weeks, two of which we were on holiday in France.
The trial was successful, Amy has asked for the pump and whilst it’s not cut-and-dry her Consultant is very hopeful that her request will be approved.

Controlling the pump via the AnyDana-A 2.0 app

We had delayed starting the trial as we wanted to test the new Android app, Anydana-A 2.0, which can be used to control the pump totally, being able to do anything on the app you can do on the pump. At the the start of the trial (30th July) the app wasn’t released but three days later as we travelled through France we got the call from Tom, our DanaRS and Advanced Therapeutics representative, to say the app was live.
Within minutes the app was downloaded, installed and was talking to the pump.
Simple.

Wait, what, you used the app in preference to AndroidAPS?

Yep.
The important part of this trial was to trial the pump, its cannulas and general day-to-day wear, tear and usage. We don’t need to check whether AndroidAPS works for Amy because it’s based on OpenAPS and that works very well for her, plus other users have millions of hours of experience – not each, jointly – of OpenAPS and AndroidAPS.
That works, no question.

So then, the pump?

The pump, being one of the smallest and lightest currently available in the UK, was comfortable to wear, coming with a whole range of clips, holders and things which we’ve really no idea what they’d be used for.
All pumps have similar features and Dana RS seems to have all the ones Amy requires, plus she found the menus easy to use on the pump, then again that was only for the first few days until the app arrived.
Amy found the reservoir changes easy and the only downside is possibly that filling the reservoir is a little fiddlier than she’s used to BUT a major advantage is that she only has to change reservoirs every six days. Hmm, should I write that on a public page? Six days? She says she’d rather spend a few seconds fiddling with “that screw” (see below) if it means she can change reservoir less often, with its insulin wasting, looking-for-bubbles-time-consuming nature.
Big downside though: her trial pump was grey not pink. Euw, eh?

And the cannulas?

dana soft release -oThe rather funky cannulas caught Amy’s attention immediately, with their 360 degree spinniness and the ability to disconnect rather than rip-out during an inevitable door handle moment.
The cannulas worked well but did leave a raised doughnut shaped mark and we didn’t think about trying anything to stop that happening. After the trial finished we realised we should have contacted Tom as he had many suggestions to try, and even let Amy continue using the pump for a further two weeks until she ran out of cannulas. During that time she used Cavilon for the first time and that seemed to help.

So then, the app?

In the first week the app had a few display issues but the developers were really on it, responding to feedback and rolling out minor tweaks every day it seemed, updates which really slowed down as they ironed out the issues.
Using it was easy and I found myself saying to Amy at each meal time “have you bolused?” as I was used to seeing her pull out a pump, but that’s a thing of the past with this app.
Here’s a video Amy did to show to do a simple bolus, a combo/multi bolus and how to change a basal rate:

So then, “that screw”?

dana screw
A couple of people who used a Dana R – the RS’s predecessor – as part of Dr Hovorka’s trials have mentioned about “that screw”, which is part of the pump/reservoir, putting out negative comments which others mention as the reason not to go for a Dana pump. The problem for me as that the originators don’t make a big thing of it, others do, why? Anyway, the Dana pumps work differently and has a screw which clips into the reservoir – see this video for more info. Honestly this process takes seconds, if that, way less that other parts of the refill process.

AndroidAPS: wait, what, you used it?

For the actual trial I didn’t even look at AndroidAPS for Amy, but after Tom suggested extending the trial I just went for it.
Within an hour or so the software was all installed properly on her phone and she was offline closed-looping.
And. It. Is. Brilliant.
It’s so easy to set up, it is offline from the word go and most importantly Amy can configure it all herself because it’s on her phone. She would technically have been able to configure her OpenAPS too but that would involve more faff than she was interested in doing.
Take a look at this time-lapse of 5 hours of AndroidAPS in 60 seconds. Keep an eye on the temporary basals shown in blue, especially the area the vertical dashed-line goes through.

Insulin pump trial – Dana RS

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Amy’s been using #OpenAPS (closed loop artificial pancreas system) since March and it’s been working very well, with some impressive results such as waking up in range without fail and without intervention every morning. Her set up includes a Dexcom G5, her phone (Xiaomi 4X), her OpenAPS rig (Edison/Explorer) and a 10 year old Medtronic 715 insulin pump. The only real issue we’ve had is bluetooth connectivity which we’ve resolved very well.

So, OpenAPS is excellent and gives great results, but Amy’s pump is six years out of warranty already, might possibly break at any moment (unlikely) and the backup pump (Medtronic 712) is even older than the primary one. The dwindling supply of loopable old Medtronic pumps makes me nervous so for a while now we’ve been looking at alternatives.

danarrs_03Say hello to the Dana RS. A brand new insulin pump which can be used with AndroidAPS – which is based on OpenAPS code – and most importantly retains its warranty even if being used for DIY closed looping. AndroidAPS runs on an Android phone and communicates directly with the CGM source (Dexcom G5 in Amy’s case) and the Dana RS pump, no other hardware is required and most importantly there’s nothing which needs charging or could be forgotten when leaving the house each time. The potential to control the Dana RS using an official phone app from an Android phone (or iPhone if you really must 😀 ) is a great step forward, although its unlikely she’ll use this when she’s wearing CGM as AndroidAPS will be controlling everything. It is the only pump to allow full control via a phone: setting TBRs, doing a bolus, altering settings.

It’s taken a while to get here: I first mentioned about the Dana pump at clinic in September 2017 – back then we were talking about it’s predecessor the Dana R. I won’t go into detail but it’s been a slow process of discussions with Amy’s team to get to a point where they are happy for Amy to trial the Dana RS pump with a view to it becoming her new pump. It’s not a pump they knew about so I can fully understand any concerns they have but (I hope) they came to realise that we knew a lot about it and were confident it was the right pump for Amy at this point in time.

Back on the 12th July Amy got to see the Dana RS for the first time, she was excited. Tom, the Dana rep from Advanced Therapeutics, demoed the array of holders, pouches and holsters which pleased the girl who’s missed the trusty clip of her Animas Vibe pump. She was most excited by the 360 degree cannula which spins, hopefully meaning less kinked tubes and less pain during the inevitable moments when tubing meets door handle. Yesterday Tom came to our home to train Amy in everything, with us parents taking a real back seat, and within an hour or so she was up and running.

Day 2 has started, she’s alive, we’ll call that a win.

The trial lasts one month so we’ll keep you updated. We have no plans to involve AndroidAPS in the month’s trial but I’m not sure whether we’ll stick to that.

To see more about what you get in the kit and find out more about the Dana RS take a look at Andy’s Dana RS kit blog.

Standing on her own two feet (at DPC2017)

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Amy DPC1
As a parent you sometimes get a wake-up call that your job is done, that your child no longer needs your assistance in one area of their life. Be it walking to school, going to the cinema or shopping, catching the bus or train, or managing their Type 1 diabetes.

I’ve never been a fan of the they-need-to-deal-with-this-themselves-now-they’re-XX-years-old school of diabetes management, after all Amy’s got enough years of having to deal with Type 1 by herself ahead. We’ve always been a team, starting from when us parents did most of her care post diagnosis, to now where we do very little with her day to day management. There’s days when we never ask if she’s done a BG check, or how her levels have been, because we know she will have done them as she sees fit, and we know she will have changed her insulin pump set when needed. Now that she’s riding a moped the importance of BG management has been raised higher, and knowing the rules of checking/driving/hypos she manages this well too.

Disclaimer

Before reading on can I just apologise if this appears to be a bragging post, it is, I can’t help it. Sorry…not sorry.

DPC2017 – the Diabetes Professional Conference

Thursday 16th November marked another moment of realisation. Amy, aged 16, stood in front of a room full of health care professionals (HCPs) at Olympia as part of the Diabetes Professional Conference 2017 (DPC2017). She told them why she loved her insulin pump, how it had changed her life, how it had given her more time in the day, and most importantly how it helped her cope with life with Type 1 and a fear of needles. She stood there proudly showing her pump.

Amy DPC2She’d done similar stuff before, she’d spoken in front of 200 HCPs twice before but then the answers she gave were very short. She’d presented Nightscout and WeAreNotWaiting alongside me to Directors at JDRF and Diabetes UK, and to the team at Oxford. DPC2017 was different, as she stood there – alongside my friend Philippa and Dr Hussain – she answered Dr Hussain’s questions, elaborating on them with anecdotes and telling stories about school life, German exchange trips and the difference between two holidays in India, one on MDI, the next one using an insulin pump.

During ‘Any Questions?’ one HCP asked Amy about CGM and Nightscout – as that information was on the slide being shown – asking her how it helped. For me this was the epiphany, it was unscripted but Amy answered well, going into detail about how we used Nightscout to help with her GCSEs and how she felt it was a safety blanket to support her own management.

Thinking back to diagnosis I can’t imagine we’d ever have thought she’d be where she is now.

DISCLOSURE
No payment other than travel expenses was received.
Amy did receive a mahoosive feeling of satisfaction though.

Global Diabetes Day 2017 and Blogaversary 5

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Okay, I know, it’s really World Diabetes Day but for reasons which will become clear later I’m calling it Global Diabetes Day this year.

It’s been in some ways a busy year, in some ways a quiet year, since 2016’s World Diabetes Day blog.

bannersIt started with Amy and me presenting Nightscout, WeAreNotWaiting and DIY artificial pancreases to the team at Oxford in January and ends (almost) with Amy presenting with Dr Sufyan Hussain at the Diabetes Professional Conference 17 at Olympia this coming Thursday and me lecturing at South Bank university a few days later. I’ve been really pleased to meet so many teams and HCPs who want to know more about what patients are doing and one day, who knows, I might actually feel comfortable presenting. Nightscout UK had a great weekend at the Children With Diabetes Friends for Life conference in October where we used for the first time the roller banners I created. October saw Amy and I attend the QiC Diabetes Awards which I helped judge this year, walking away with a Winners trophy for T1 Resources and collecting the People’s Award trophy for my friend Sarah Davies who works tirelessly supporting families and adults who are using Nightscout.

Enough about us, and back to Global Diabetes Day.

On Saturday I went to the premiere of the #T1DGlobal17 video, a day for people with diabetes and carers, organised by Gavin Griffiths, who had been sponsored by Sanofi Diabetes to visit lots of different places around the world, chatting to T1 groups and doing some exercise classes and events with them. Saturday saw the premiere showing of the film of that trip but Gavin made the day much more than that, including multiple panels of people discussing different topics. I was astounded at the work being done by all (Chris, Bri, Sara, Shelley, Rebecca) but the standout for me was Jacq for the amazing work she has done with DWED (Diabetics with Eating Disorders) for people with Diabulimia, a condition some few have heard about but a condition that as a parent of a teenage daughter with Type 1 I have previously worried about.

diathletes

The best part of the day for me came later when Gav’s League of DiAthletes took the stage, each one telling us what life was like for a person with Type 1 in their countries of Ghana, Kuwait, Pakistan, Brazil, Costa Rica, Australia, Ghana and the Republic of California as Gav liked to call it. The stories range from good to bad but they had one thing in common: the work being done by the people for the people was amazing. Communities pulled together to help others live their lives. The world is a much better place because of the likes of Fred, Mohammad, Sana, Naty, Dani, Paula, Lucas, Nikki and of course Gav.

It made me think a lot, it was very humbling.

Here we are looking at which insulin pump Amy is going to get next, arguing for the pump we want rather than what the clinic have offered, having the options to try the latest insulins, deciding whether Amy prefers this cannula or that, this meter or that, this insulin or that. We moan about not having funded CGM, or currently the lack of CCGs funding Libre. At no point ever have we faced the issues that any of the League of DiAthletes face every day. We don’t need to fight for anything that Amy actually needs – not wants – to live. We are very privileged to be in this position. We are very privileged to have the NHS.

And that leads me on to one of my favourite speakers from Saturday, Elizabeth Rowley who runs T1International. Elizabeth, wearing her t-shirt emblazoned with ‘Access to Insulin is a Human Right’ spoke about the fantastic work T1International is doing, about their work with the #InsulinForAll movement which has always been brilliant but even more so now with the crisis our friends in USA are facing with the cost of their insulin, a so-called rich country where people can’t afford insulin. It’s mad.

Basingstoke Type 1 Diabetes Awareness Evening 11/03/16

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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.

Medical Technology Awareness Week Reception at the Houses of Parliament

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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.

Why I am Cycling to Paris for INPUT Diabetes

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London 2 Paris Logo + Input Logo
Disclaimer: this post is all about fundraising – sponsorship link is here.

The beginnings of a trip

In preparation for doing last year’s 100km Nightrider charity ride with group of work colleagues we naturally formed a team bond, of people who just enjoyed cycling together. After the Nightrider event we decided that we’d cycle somewhere in 2015 as a team. It had to be a bigger challenge than before whilst not being so silly we’d never make it.
Many months later and the rough idea was formed: we would cycle from London to Paris taking in much of the Avenue Verte, south of Dieppe. With routes planned the trip works out at 320 kilometres, over 4 days, split into two days of 100km, one of 65km and the last of 55km.
This ride would be an aided ride, quite different from the normal London to Paris route where people are guided by a company who plan the route, the hotels, supply food, have support vehicles which carry your belongings and charge a fair bit for doing this.
This trip is a cheap trip, I’m organising the routes, we’re carrying our own gear and it’s going to be fun too. It’s costing less than £250 all in.

To fundraise or not to fundraise

Originally the plan was to get some sponsorship but after a while the group decided to just treat this as a holiday. I on the other hand decided to respond to Lesley from INPUTs question from the previous year “I wondered if you’d like to raise some money for INPUT, we don’t need much to keep going”.
So with that thought in my mind I decided that INPUT Diabetes would be my charity of choice for this trip.
If you’d like to sponsor me the sponsorship link is here.

Why not raise for a bigger charity?

Quite simply, I already have.
As a family we’ve already raised thousands for JDRF and as a national peer supporter I devote a fair amount of my free time to Diabetes UK.
Selecting INPUT was in some ways a difficult decision, given that there are so many smaller worthy charities I’d like to raise money for – DRWF, T1International, Diabetics with Eating Disorders, Seahawks – all of whom never seem to attract the fundraisers the way bigger charities like JDRF and Diabetes UK do.
These smaller charities need such a smaller amount of money to keep going and provide such a valuable service for the people they support.

A little more about INPUT

Unashamedly stolen from their website here’s a little more about INPUT Diabetes.
We aim to help any person who could benefit from insulin pump therapy, and has motivation to use it, to access it through the NHS. Our mission is to support patients by advocating for easier access to diabetes technology across the UK – from insulin pumps to smart glucose meters and continuous glucose monitoring.

INPUT the charity we’ve never needed

We’re the lucky ones, we’ve never needed to use the services of INPUT and although I’ve asked them the odd question we never needed their help, but so many others do. Raising money for them is more about recognising the great job they do advising people of a way forward to get an insulin pump, helping them through decisions about pumps and CGM.
Seeing Lesley at JDRF Discovery Days tirelessly trying to help others is a lovely sight, she’s such a great advocate for pump therapy. Hearing another one of INPUT’s team, Melissa, talk about the Diabetes UK Big Event was also great as spurred me on to looking into using CGM as soon as possible.

And finally…

Just in case you missed it…my sponsorship link is hereLondon 2 Paris Logo + Input Logo

#WeAreNotWaiting thanks to #xDrip – Introduction

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xDrip logo on left, Nightscout logo on right
As you can see xDrip loves Nightscout
NOTE: xDrip used to be called DexDrip so you might find some references to the old name in this article.

 

Okay, I’ll own up, I know I shouldn’t be so excited about this but I am.
This is a game changer, for us and many, many more.
It proved its worth within 24 hours when I saw Amy was hypo whilst sleeping (see below). Amy wouldn’t have woken up and tested her blood glucose for another 4 or 5 hours but by having xDrip working I saw that she needed some glucose tablets to raise her blood glucose levels. 5 minutes later she was back asleep…for four more hours. #Teenagers!

Interested in further posts about this subject? Why not like this blog’s Facebook page and get notified of updates, or click ‘Follow’ using the button at the bottom-right of this page.

PLEASE READ THIS ADVISORY

a) Never make a medical decision based on a reading from any CGM device, whether certified (eg Dexcom) or not (eg xDrip). Always perform a fingerstick blood glucose check first.
b) xDrip is a DIY product, decide for yourself if you wish to use it. Build it, test it, test it again and use (if you want to) in conjunction with a certified receiver.
c) The fact that it is working for us does not mean it’s right for you.
d) Never build a xDrip for anyone else and never sell one.
e) The blogs are provided for information only. We are not endorsing it for use by others, nor promoting it, just merely publishing our information as well as answering questions from previous blog articles.

partially made up xDripSo what is xDrip?
xDrip is a combination of a device and a software application which receives data sent out by a Dexcom G4 CGM transmitter/sensor and displays the glucose readings on an Android phone. The app can also upload it’s data for use by Nightscout, which in turn means glucose readings are available on the internet via a PC/Mac, phone or even a smart watch (Pebble etc.).
xDrip is made up of two things:
1. The first is a do-it-yourself device, made up of four components which you can buy off the Internet and solder together. Total price is about £40 including battery. (That’s a partially made device on the right).
2. The second is the xDrip application which runs on Android phones (4.3+above with Bluetooth Low Energy (BLE) support). The app uses the xDrip device to read the output from a Dexcom CGM (continuous glucose monitor) sensor/transmitter. xDrip links up to existing Nightscout databases. The xDrip app can feed the data to a Nightscout database, which in turn means the data can be accessed via the Internet practically anywhere, using a PC/Mac, laptop, smartphone (Android/IOS/Windows) or better still a SmartWatch.

Wait! What? Nightscout? BLE? CGM? Dexcom? Animas?
Okay, it’s probably a good time to go over some of the common words I’ve used in the article. I’ll presume you’re already aware of insulin, insulin pumps, glucose levels and the world of Smartphones.
Animas – Animas is a company that makes insulin pumps. My daughter Amy has been using one of their pumps – called the Vibe (yeah, yeah, I know!) – since since June 2013. We chose the Animas Vibe specifically because of it’s use of Dexcom’s CGM system, although it turned out to be a whole year before we got the chance to use CGM.
BLE – is a version of the Bluetooth communication protocol which uses a low amount of energy, which means devices can work for longer without charging. Android has built-in support for BLE from version 4.3 onwards.
CGM – Continuous glucose monitor. A device which regularly samples the glucose level of its wearer, sampling the glucose in the interstitial fluid, not the blood. If you’re new to CGM perhaps take a look at this blog of mine: CGM: we’re live with Animas/Dexcom.
CGM-in-the-Cloud – is a term for any CGM which can be connected to a web site to allow for remote monitoring of someone’s glucose levels. It’s pretty big in USA, not so much over in Europe. A big player in this is Nightscout (see below).
Dexcom – Dexcom is one of many manufacturers of CGM systems. We use Dexcom because it’s linked with Amy’s Animas Vibe pump, if we’d got a Medtronic pump we’d use their Enlite CGM system. One benefit of Dexcom’s CGM appears to be that the sensors last longer – which is a big thing for us (who pay for CGM ourselves) as it lowers the total cost of using CGM. For the record I don’t believe Dexcom is any better than the new Medtronic Enlites.
Nightscout – Nightscout is “an open source, DIY project that allows real time access to a Dexcom G4 CGM from web browsers via smartphones, computers, tablets, and the Pebble smartwatch. The goal of the project is to allow remote monitoring of the T1D’s glucose level using existing monitoring devices.” In short Nightscout and the people behind it are awesome.

Who should we thank for xDrip?
Not me that’s for sure.
xDrip is the brainchild of Stephen Black, who was recently diagnosed with Type 1 Diabetes. With the help from others in the CGM-in-the-Cloud community Stephen has designed the xDrip device and written the software.
I think he deserves a big round of applause.

So how does it work?
SmartWatch

  • Dexcom sensor reads glucose level
  • Dexcom transmitter sends out data from sensor, like a split second radio broadcast
  • The xDrip app (on Android phone/tablet) controls the xdrip device to listen for and receive the Dexcom data.
  • The app displays information about the person’s glucose levels now and over the last day or so, indicating whether it rising or falling or staying level
  • If required the app can upload the data to a Nightscout database. We didn’t do this initially but set it up within the first week.
  • If using Nightscout parents (etc.) can view Nightscout info on a PC/website/smartwatch, like on the right. I’ve seen some great pictures of parents looking at their kid’s glucose level being displayed on the parent’s Pebble watch whilst the kid does some activity with their friends.
  • A further step is the use of another Android/smartphone application named Nightwatch, also written by Stephen. It relays information from the Nightscout data onto a secondary phone and potentially on to a smartwatch.

That’s Stephen’s SmartWatch above/right, showing the glucose levels on mg/dl (so don’t panic UK people).

Stuff you’ll need before using xDrip

  • Dexcom G4 CGM system, including transmitter and sensors.
  • An Android phone or tablet running version 4.3 or above and the ability to use BLE.
  • Components for the xDrip device (Wixel (£14), LiPo battery (£6) and charger (£6), BLE module (£15) and some wires to link it all together.
  • A case to put all the components in. (Yes I really must buy a case soon.)
  • A soldering iron or a friend/relative with one. I bought one off eBay for £12 including the iron, solder, iron stand/sponge and magic hands with magnifying glass.
  • A bit of patience. I didn’t have any but on reflection it would probably be a good thing.

In this next blog I detail the components I bought, which are pretty much the same components Stephen Black (the creator of xDrip) used.

Is this really a do-it-yourself project?
Yes. Definitely.
Before starting on this project I had never soldered any electrical components, I even had to buy a soldering kit specifically for this. Fair enough I program computers for a living but in this case my knowledge actually hindered my progress as I looked for a complicated solution to a problem I didn’t actually have. Luckily Stephen was on hand (via Twitter) to help me through it.
Soldering wise I’d say I spent a couple of hours in elapsed time making up the device, but that’s only because I was taking it very slowly to make sure I got nothing wrong. I’d imagine anyone with soldering experience would have this done in a few minutes.
If you don’t feel you can solder the components together why not ask a friend, relative or colleague?

xDrip's first 'catch'A real life example
With the xDrip device in Amy’s room, we checked that our tablet’s xDrip app could communicate with it when in our bedroom and also when downstairs in the kitchen; it could.
Off to bed we all went, everyone drifting off quick quickly, except me as I was busy staring at a tablet mesmerised by the information in front of me. (I really hope that’s a first night thing!)
At 7am I woke up and went downstairs, taking the tablet with me but not looking at it, placing it on charge in the kitchen, underneath Amy’s bedroom. I heard a noise and presumed it to be a mobile getting a Facebook notification or something. Then it happened again.
I realised it was Amy’s Animas Vibe pump vibrating to tell her that something wasn’t great, it was right she was low. Amy was fast asleep with the pump lying on the mattress beside her, she couldn’t feel it, it didn’t wake her. On the other hand I was in the room underneath and heard it, the vibration going through the mattress, down the bed itself, onto the floorboards, through the joists and onto the ceiling below!
So I checked the tablet and saw the image on the right. I waited 10 minutes to see if her level improved – it didn’t – and went up to wake her to give her a few glucose tablets. Amy went straight back to sleep, I went downstairs happy that she was no longer in danger.
Twenty minutes later I was pleased by the 5.5mmol showing on the xDrip app.

Interested in further posts about this subject? Why not like this blog’s Facebook page and get notified of updates, or click ‘Follow’ using the button at the bottom-right of this page.

 

Interested in what components you’ll need to build xDrip? Then read this: #WeAreNotWaiting thanks to #xDrip – Components Required

Blogaversary 2 on World Diabetes Day 2014

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Spinnaker Tower on World Diabetes DayIt’s hard to believe yet another year has gone by in the Diabetes world, here’s a little bit about what’s been going on.

But first, it’s my blog’s birthday; 2 years old today (well actually yesterday but let’s not worry about that minor fib). Its visits have doubled since the first year’s statistics: I’m pretty darn amazed with that. What really pleases me is that I can see from the stats that people have searched Google and found the answers in my site, that’s kind of why I started it in the first place.

In December 2013 my daughter Emilia decided to take part in the TrialNet study at Bournemouth. It was two long months before we found out her results (and mine) were negative which pleased us, although we were saddened to hear that a friend’s result was positive.

Christmas and Amy’s Diaversary (29th Dec) came and went and her 6 month old Animas Vibe insulin pump made life easier during the festive period.

Amy and KevEarly in the new year I started my shifts as a national peer supporter for Diabetes UK, answering phone calls once a week and helping people find solutions to problems, or giving them ideas from the experiences we’ve had in the family. It’s proved to be really rewarding.

AccuChekInsight1March was a whirlwind on a particular day, the 15th, which saw us have two back-to-back diabetes events, doing their impressions of buses and policemen (none around, then there’s two). The first was an education day held by the local Type 1 families group Seahawks where amongst many other things I got to check out Roche’s latest pump, the Insight. It a great event and I was sad to rush away from just after lunch. But rush we must as Amy was doing a sponsored Indoor Skydiving in aid of JDRF along with lots of kids we knew pretty well; she loved it, every minute of it.

dblogweek squareIn May I joined in with blog week and I remember how nervous I felt when releasing my poem for Tuesday’s entry: A Childhood All Gone. It turns out I needn’t have been so nervous and I think that’s turned out to be my most favourited/Retweeted/Liked blog post ever.

flatline-dayEarlier in March Animas got the green light for use of the Vibe pump with Dexcom CGM for children, something we’d be waiting for since June the previous year. One year after getting her pump Amy went live with CGM and what an eye-opener that turned out to be.

twitteravatarJune also saw me cycling 100km around London overnight with a group of friends in the Nightrider charity event, where my local group of 8 raised £2700 for JDRF. On the plus side the training for it and switching to a healthier diet has also seen me shed 1.5 stone.

My personal highlights for this last year though involve each one of my kids. First Amy spoke in front of hundreds of Paediatric Health Care Professionals in a transition chat set up by the wonderful Dr Kar from QA Hospital in Portsmouth. Secondly, it was Emilia’s prom and a combination of pride and tiredness (from Dad-taxi pick ups at 3am) made me quite reflective: The Forgotten Sibling.


wpid-20140921_133723.jpg emiliaswing

CGM: we’re live with Animas/Dexcom

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pink-vibe-sniggerOn Wednesday last week, Amy fitted her own Dexcom CGM for the first time, going live with something she’d (and we’d) been looking forward too for almost a year, 363 days in fact since she got her pump on 20th June 2013.

It was back in March that Animas announced that they had got the licence to sell Dexcom kit for use by kids aged 2-18 but communications dried up and on an off-chance call to them back in May I managed to purchase the kit required: 4 sensors and 1 transmitter at a cost of £500. Typically since we’d been waiting the price had gone up £50. We could have purchased CGM through another reseller for more money and got it a year ago but I wanted the support from two important people, our clinic and Animas. Ultimately I feel this was worth waiting for but I wonder how much support we’ll actually need.

Trying to be prepared I researched what else we might need for the CGM and purchased some funky pink Camo Rock Tape (thanks Rachel), some SkinTac (thanks Carolyn/Shaun) and importantly TacAway too. Another parent suggested that we start without using these things as we needed to make sure Amy wasn’t allergic or sensitive to the Dexcom adhesive.

Amy with new sensorFitting day arrived and all four of us went to meet our rep Emma at the hospital, along with 2 DSNs and a student nurse. As well as being the first people at clinic to have an Animas Vibe it turns out we’re the first to get Dexcom too, so our DSNs were keen to find out all about it. It’s great to have their support.

Emma explained about the kit, showing demo pumps and we went through our expectations of CGM, with Amy saying all the things Emma and the DSNs wanted to hear (spot patterns, basal checking, alerting). Normally Emma would show people some videos about sensor insertion but Amy and I had already watched the great sensor insertion videos by Diabetic Danica – arm insertion video here – so we skipped that part.

With a demo/fake sensor inserter Emma went through the routine slowly for all to see. Within minutes Amy was doing it although as it was the first time she asked Jane to do the initial plunger part. With the transmitter clipped in to the sensor Amy set up her pump to recognise the transmitter and all the other CGM settings (alerts, sounds, ranges).

Amy said the the sensor insertion was easy and painless, although she could feel something it wasn’t painful.

Then it was a case of waiting for two hours until it was time to do the two start up calibration blood checks, something you only do each time you change the sensor. Whilst waiting the Vibe gives you a count down meter which Amy kept checking during the next two hours, keen to calibrate and see her BGs on the screen. The two hour mark came just as we were waiting for the Park&Ride bus to turn up; Amy got out her meter, “no Amy let’s wait til we’re back in the car”. But Amy didn’t wait, she did the tests on the bus and smiled at seeing her glucose level on the screen.

One of the reasons for getting CGM was to make sure Amy’s basal profile was correct whilst asleep, how about this for starters (although I doubt it will stay this good):
A sleeping teenager's basal profile

#DBlogWeek 2014 Day 4 – Mantras and More

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dblog week 2014Thursday’s topic:Yesterday we opened up about how diabetes can bring us down. Today let’s share what gets us through a hard day. Or more specifically, a hard diabetes day. Is there something positive you tell yourself? Are there mantras that you fall back on to get you through? Is there something specific you do when your mood needs a boost? Maybe we’ve done that and we can help others do it too?

Amy on Indian trainFrom day one – okay it was probably more like day 101 – we tried to get Amy to be proud of her diabetes and not let it stop her achieving whatever she wanted. It’s a bold statement to make and one that on some days seems a mega-distance away but on the whole it’s achievable and spurs her and us on to do things that we probably wouldn’t have done if she’d never been diagnosed. It was around day 101 that we started planning our month long backpacking trip to India, something which made us very nervous – because of Diabetes, not India – but something which made us feel much stronger upon our return. Whenever I see photos of that trip it reminds me what a leap of faith it was, how we dealt with it and the sense of achievement we got from it. On top of that it was a bloody great holiday.

Us and Gav at end of GBR3030On Saturday at a JDRF Discovery Day in Reading there was a talk by Gavin Griffiths (aka ‘Diathlete’) who runs ultra-marathons without letting Type 1 Diabetes stop him. He started by asking the audience whether they saw Type 1 as a good thing. No-one held up their hand, although I raised mine halfway for a second before putting it down. Of course I couldn’t feel that it’s totally a good thing, to see what Amy has to go through, but I truly believe we’re all better people for it. Gavin has showed that with the right preparation and training it’s possible for someone with Type 1 to running the length of Great Britain (900 miles!).

Pretty in pinkTaking part in Gav’s GBR30/30 challenge made Amy even more determined to kick diabetes’ arse and it increased her advocacy for Diabetes. I see this in effect whenever we go to a diabetes event and someone sees her pump, which happened like clockwork at the JDRF event last Saturday. Amy had 6 or 7 adults and children all listening to every word she said as she described how having the pump has made life so much better for her and why it’s so ‘awesome’.

So our mantras could be that ‘diabetes will not stop us’ and ‘we are stronger now than before’. Remembering the good things we’ve done certainly helps when feeling down a bit.

But those mantras are no good when you’ve just had enough.

Luckily last July we attended a great event named ‘Greater Minds Inspire‘, organised by Zoe and Hedgie Pricks Diabetes, which had many inspirational people with Type 1 each talking about their achievements. Every one of them was brilliant and Amy certainly started to see that she needn’t stop doing things because of having Type 1.

But it was a video from Joe Solowiejczyk which was shown at the event that I remember when things are getting a bit much I remind myself of what he said, especially about meltdowns (about 1 minute in).
httpv://www.youtube.com/watch?v=SzEuEl4GiuU

I really like the bit about planning to have a meltdown day, seems like a thing we should plan too. We let Amy have food-meltdown-days when she has whatever she wants and we deal with any glucose level issues later. She still carb counts during these days but with so many boluses and the stacking of insulin things inevitably go badly. But within 24 hours any ‘bad’ levels are forgotten and all she can remember is that she had a cracking food day.

dblog week 2014

#DBlogWeek 2014 Day 1 – Change the world

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dblog week 2014Monday’s topic:Let’s kick off Diabetes Blog Week by talking about the diabetes causes and issues that really get us fired up.

One of the (many) things that gets me fired up is the headline ‘diabetes is going to bankrupt the NHS’ that you see splattered in news stories occasionally. Articles appear in many online media article, like The Guardian, Sky, The Express and The Daily Mail. At least the NHS filled us in on the stats.

As well as the stories we hear that the people with the purse strings want to privatise elements of the NHS to farm off their ‘problem’. Yet at the same time some of the advice or practises seem to either waste money of give advice which is contrary to current thinking.

 
Without the NHS I see that our family could be missing one rather special thing, Amy.

My ‘change the world’ blog is more about changing the minds of those in Government and my words to them are simple:
Back off.
Change your plans.
Do you realise what an asset you have, the envy of a world which looks at the NHS for the care that it gives, not the money that it costs?

Rather than stop there I’ve got some ideas on how you can change things, although nothing below is diabetes related. As a caveat I have absolutely no medical training, so the following might just be stupid pipe-dreams born from reading and misunderstanding things far more complicated than I realise.

  • Change your focus on Cholesterol and get rid of the Eat-Ill plate – ok it’s the Eat-Well plate really – and prescribe some decent modern up-to-date advice, to adults, to parents but most of all to kids. You’ve got fantastic support from the likes of Zoe Harcombe (@zoeharcombe), so use it and rid Britain of this metabolic disease. Less obese people means less money you’ll have to spend on medication.
  • Only prescribe Statins to those that actually need them. The NHS already knows it’s over prescribing statins. You’ve got fantastic support from the likes of Dr Asseem Malhotra (@DrAseemMalhotra), so use it and save some of your budget.
  • Make sure that nothing can be prescribed on the basis of a single ‘high cholesterol’ figure which isn’t broken down. I’m happy to have high cholesterol if it’s all HDL or the ‘good’ LDL. This one will of course help the one above.
  • Come to think of it if the EatWell (*ahem*) Plate was changed and favoured less carbohydrate wouldn’t that reduce your bills for Metformin and Insulin? Remind me how much that costs you again.
  • Surely millions could be saved by giving easy and cheap access to sport and leisure. There’s thousands of homes soon to be built near where I live and work but I don’t see cycle lanes high on the agenda but they could be and it could all be paid for by the developers, not you, just make them do it. There will be lots of parking no doubt for fuel guzzling cars. Tell me, in the long term will you ‘gain’ more money from cars or making people healthier?
  • You know that all types of Diabetes are growing, so how come you are investing less than many countries? JDRF’s CountMeIn campaign has hopefully shown the Government how low our research grant is compared to other countries. You have numerous MPs in the likes of George Howarth, Caroline Noakes and Jamie Reed who could tell you lots more. So, up the research grant, help find a cure and/or prevention and help eradicate diabetes full-stop.

    •  

    dblog week 2014

The wait is (almost) over – CGM, Animas, Dexcom and Kids

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pink-vibe-snigger
Earlier this week I blogged about waiting for Animas to get their licence to sell Dexcom G4 for use by kids and how the Diabetes Online Document (#DOC) rumour mill was suggesting an announcement would happen soon.

That announcement was rumoured to be tomorrow at a symposium held by Animas at the Diabetes UK Professional conference in Liverpool.

But it happened today. On Animas’s stall in the exhibition area sat an Animas toy kangaroo wearing a badge which said:

Animas Vibe & CGM system
NOW APPROVED
for children aged 2
years & older

One of my Twitter friends let me know the exciting and now official news:

Making the call to Animas

At lunch time I contacted Animas (0800 055 6606) to try and register for, or buy if possible, the newly approved CGM.
“Hello, I’d like to buy CGM for my daughter who uses an Animas Vibe, now that you’re officially licensed to sell them.” The lady on the other end of the phone was surprised I knew about it but was happy to talk with me.
I was informed the launch date is sometime in April, not April 1st, or the end of April, just at sometime.
I gave my details to be kept on file for them to inform me when they had any news.

And the price?

Animas has had a starter kit deal for some time, certainly from June last year. For £450 that deal gets you a transmitter and a box of 4 sensors.
So I asked if that deal would be still on come April; the conversation went something like this:
Me: “And will the £450 starter deal still be on?”
Animas: “I’m not sure, currently that deal ends on March 31st”.
Me: “Oh great. Well, I’m happy to pay now and just wait until you can send the bits to me.”
Animas: “I’m sorry, we’re not in a position to do that.”
Me: “Oh great.”

Patiently Waiting – CGM, Animas, Dexcom and Kids

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pink-vibe-snigger
In May 2013 we chose Animas for Amy’s pump for many reasons, one of which was that in the future we might like to get CGM (Continuous Glucose Monitoring) and Animas’s in-built CGM display unit would make using CGM cheaper – because we wouldn’t need to purchase Dexcom’s own display unit.

Continuous Glucose Monitoring? What’s that then?

A CGM system consists of a sensor which is worn on the body and has a small wire just under the skin which constantly senses the glucose in the interstitial fluid. This sensor connects to a transmitter which sends data to the receiver – in our case this will be the Animas Vibe insulin pump – which can show the user what their glucose level is like. It’s important to know that as it checks interstitial fluid and not blood that the glucose level can be up to 15 minutes behind the actual glucose level.
The Animas Vibe links up with Dexcom’s G4 system.

CGM, an expensive option

There’s no doubt about it CGM is expensive.
One sensor costs between £45 (Animas) and £62.50 (third party resellers).
Doesn’t sound too bad does it, but then again it’s only guaranteed to last one week. ONE WEEK!
If you used it full time, one sensor per week, plus needing two transmitters per year you’d be looking at paying over £3000 and that’s using the cheapest pricing available.
Luckily some manage to get their sensors to last a fair bit longer than that, bringing the cost down dramatically, but then again that’s going against the advice of Dexcom so I’m not suggesting anyone does it. You don’t have to use CGM full time, you can use it for as long as a sensor lasts, then take a break before put a new one on.

Does anyone really need CGM?

It’s a good question. Many health care professionals would say no, for many reasons. They’re definitely worried about the psychological effects of yet another thing to do for diabetes and I can understand this.
Twenty, possibly even 10 or 5, years ago people weren’t using CGM so why do we need it now?
I guess the truth is that we don’t need it now: by understanding how your body reacts to glucose, insulin, stresses and exercise (etc.) some people can really do well to avoid highs and lows, but doing this takes a lot of effort.
Some people will have a clinical need to use CGM; Amy isn’t one of them.
On the other hand CGM will tell you what’s going on with your glucose level throughout the day, alarming you when you go out of range. It tells you if you’re going up or down or not and it shows what’s been happening over the last so many hours. It effectively performs Basal Tests each and every night something which is done by many pump users or their parents.

Dexcom G4

If you’re in the UK you can purchase sensors, transmitters and the stand alone display unit for Dexcom G4 from third party resellers.
You can do this if you want to use it as an adult.
You can do this if you want to use it for your child, if they’re 2 years old or more.
You don’t even need to get a letter from your hospital to say you or your child has Type 1 Diabetes.

Animas and their Dexcom G4 licence…for adults

Animas are licensed to sell Dexcom sensors and transmitters to adults in the UK. You don’t even have to be an Animas pump user to be able to buy sensors from them.
So if you’re an adult with an Animas Vibe you can purchase Dexcom sensors/transmitters and have CGM displayed on your pump.

Animas and their Dexcom G4 licence…for kids (2-18 years)

We were told in April 2013 that by the time Amy got her pump one month later Animas would have their licence to sell Dexcom G4 sensors/transmitters for use by kids.
It’s never arrived.
We’ve been patiently waiting.
We’ve been getting frustrated at the waiting game.

Where’s the logic?

In the UK anyone can buy Dexcom G4 sensors/transmitters, whether it be from Animas or a third party reseller.
In the UK an adult can buy their Dexcom G4 sensors/transmitters direct from Animas.
In the UK a parent can buy Dexcom G4 sensors/transmitters for their child from a third party reseller.
In the UK a parent CANNOT buy these same things from Animas for their child.
Where’s the logic?
As a computer programmer this drives me mad.
Clearly there’s more to it that I don’t know about.

Finding an alternative method

I’ve been very keen to buy through Animas as their prices are so much lower and effectively it means you can get 11 sensors for the price of 8 bought from a third party reseller. As one sensor can last three or four weeks this means that you’d get at least two if not three months more of sensing by buying from Animas.
We’d been told that our hospital would not fund the CGM (fair enough, it’s expensive and there’s no clinical need) but they would help us talk with Animas. I don’t want to go into detail about this but it’s not happened, I’ve felt very unsupported in our quest and frankly it’s really annoyed me. Nine months after originally asking for support I’ve heard they’ve sent us a letter for us to send to Animas to hopefully prove their support for Amy’s case.
However maybe it’s all too late.

Is that a licence I can see in the distance?

The diabetes online community rumour mill has been working overtime recently.
There’s been talk of Animas holding a meeting/presentation/symposium at the Diabetes UK Professional Conference in Liverpool this week.
There’s been rumours that Animas may well be announcing that they’ve got their licence to sell Dexcom G4 products for kids (aged 2-18).
Recently a post on a Facebook group asked if anyone had heard anything.
They hadn’t.
It started a lot of posting activity, with people emailing or calling their Animas rep, or their Diabetes Specialist Nurse.
Whilst no Animas rep would confirm or deny anything one nurse may well have let the cat of the bag.
It seems quite likely that this week the announcement will be made that April will be the launch date.
But we’ve been here before with rumours of licences and dates so I’ll take this ‘news’ with a pinch of salt.

Of course I really hope this rumour is true.

Whirled diabetes days: a new blog, one year on

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blog announcementAnnouncement of new blog, November 2012

On World Diabetes Day 2012 our new blog, Circles of Blue, went live.

What a year it has been.

A good year.
A year of dealing with diabetes proactively.
A year of diabetes advocacy.

 
whirl (hwûrl, wûrl)
verb. whirled, whirl·ing, whirls
    1. To revolve rapidly about a center or an axis.

 

“there’s now multiple series covering diagnosis, getting an insulin pump and travelling to India with Type 1”

The blog was officially released on World Diabetes Day 2012 although I let everyone have a preview of it a few hours before that day dawned. Since then we’ve written 70 posts over many subjects and there’s now multiple series covering diagnosis, getting an insulin pump and travelling to India with Type 1. It’s fair to say I’ve been blown away to how it’s all been received, not just by the #DOC (Diabetes Online Community) but by the thousands of individuals who’ve happened to find an article of use to them thanks to Mr Google. It pleases me to see that people have reached my blog after search for things like ‘can a diabetic travel to India?’ (answer:yes) and ‘can a person with diabetes get a fast pass at Alton Towers?’ (answer:yes).

It’s been a year of reflecting

Well, actually it hasn’t been a whole year, most of the reflecting was done in November and December when Amy, Jane and I wrote our diagnosis stories – full series of articles is here. Occasionally I try to re-read them but I rarely get to finish them.
One of the most read areas of the blog is the series about travelling to India with Type 1 Diabetes with the top page of choice being Cooling Insulin with Frio Wallets. I really enjoyed re-working my original blog about that trip – Monsoon Meandering – reflecting on the epic trip it was and making it useful for any people with diabetes who are thinking about travelling there.

It’s been a year of learning

This time last year we knew very little about diabetes, we just coped with it on a day-to-day basis.
Amy had just got an Aviva Expert meter which made life so much easier that I started asking the #DOC about insulin pumps. It took a while to get Amy interested, and further time for her to not faint whenever they were mentioned, but in March 2013 Amy decided she wanted a pump and on the morning of the 20th June she took her last scheduled injection and starting pumping a few hours later – it’s changed her life in so many ways.
Now, we’re looking into CGM (Continuous Glucose Monitoring) and hope that early next year Amy will starting using that.
All of this learning wouldn’t have been so easy to obtain without my friends from the #DOC, so once again I thank you all for that.

It’s been a year of attending events and meeting people

“Since April I’ve met with around 40 – forty! – people I know from the #DOC”

Starting in April we met our first two people from the Diabetes Online Community (#DOC) – Laura and Anna, who gave Amy a demo of their pumps.
A few days later We went to our first official event the JDRF Discovery Day in Bristol; the Portsmouth “SweetMeet”; the JDRF Discovery Day in Dorset; the DRWF Wellness Day; the Greater Minds Inspire event; the Diabetes UK Big Event; the Bristol JDRF Walk to Cure.
In May we took part in Gavin Griffiths’ GBR30/30 Challenge, with Amy cycling 30 miles in one day and ending it with a run up a big hill carrying Gav’s Olympic Torch.
At the end of June we had a great two days in Alton Towers with Derek, Clare and Chloe, meeting other #DOC people Philippa and Vanessa.
Since April I’ve met with around 40 – forty! – people I know from the #DOC and more importantly Amy has met some other kids with Type 1 Diabetes; they’re sure to be friends for some time.

It’s been a year of stepping up our game

Amy became as JDRF T1 Ambassador and wrote a two page article entitled – Adventures with Type 1 – for their T1 Kids magazine, appearing on the front page
I’m halfway through becoming a Peer Supporter for Diabetes UK, where I’ll man a phone line for a few hours a week, helping people with any type of diabetes. I’m excited but also nervous about this opportunity as I know I might not have the answers they need but hopefully I can help them.
Earlier this year I was asked by a neighbouring area’s diabetes special nurse to introduce parents of newly diagnosed children to the benefits of using Social Media for diabetes. I ended up creating a leaflet entitled ‘How social media helps us with Type 1 Diabetes’ which has been well received by many, be they health care professionals, newly diagnosed people/parents as well as the diabetes community at large. I’ve been so grateful to the endless retweets, posts and linking done by others in getting this leaflet out there and feel sure it’s got to many of the right people.

The icing on the cake has just arrived

Whilst writing this article a new tweet flashed up on my screen. I was amazed at its content and I couldn’t be prouder than to have a leading, respected Doctor mention this blog.

roche reachExcerpt by Dr Kar, Roche Reach magazine, Winter 2013