The out-of-the-blue email from Diabetes UK asked if Amy and I would be interested in doing an article for the Relative Values section of their Balance magazine, a smallish feature towards the back of the magazine.
Weeks later both Amy and I were telling our stories to Balance’s editor Louise, who had the unenviable task of turning two 30 minute conversations into a few paragraphs each. Whilst our stories were about life and diagnosis we also talked about Nightscout, WeAreNotWaiting and the DIY looping Amy’s been doing on and off since March 2018. I’m aware of the worries Diabetes UK might have about featuring looping stories so publicly, but I was pleased they wanted stories like Amy’s out there.
Then came the bad news, or so I thought.
My conversation with Louise went something like this:
Me: Hi, how’s the article going, is the final proof good to go to print now?
Louise: Well, there’s been a lot of talk at Head Office and people think…
Me: Oh?! [*thinks* oh, that’s it, it’s been scrapped]
Louise: …it deserves to be a bigger article.
Me: Oh heck *smiles*
Louise performed a major rewrite to combine our separate stories – and other stuff – into a five page special about DIY diabetes solutions, and that’s what you’ll be able to read in the edition of Balance which lands on doormats around the UK today or tomorrow.
We received nothing for doing this, except a cracking set of photos from our photo-shoot for the article, thanks Diabetes UK and Damian Prestidge.
Just in case you read the article and think I designed anything, I didn’t, we’re just standing on the shoulders of giants from the community who have worked tirelessly and selflessly to design systems which thousands of people, like Amy, have benefitted from.
In June I rode to Paris with a 10 mums and dads of kids with Type 1, plus 16 year old Jack (who has Type 1 himself).
Finally the videos are done.
It was ridiculously hot, riding in temperatures up to 43 Celsius, that made it quite hard work at times. We managed to minimise some of the heat by leaving our hotels really early but it still wasn’t enough, especially on the hottest day, day 3.
It was a self-supported ride, where we carried our own luggage, tools and spares, and were responsible for fixing any mechanicals. Out of the four Paris rides I’ve done we experienced the most issues this year: from Svenia’s tubeless tyre puncture woes; to Steve’s broken spoke; to Andrew’s cracked wheel rim 30km from the nearest shop!
The heat and issues were all overcome and we had a lot of fun, it really was a great group. Caveat: every trip has been great fun, brilliant team work and camaraderie, lots of beer and wine too.
The end result was we raised £12,000 for JDRF.
Here’s the videos from this year. Sit back, enjoy, and if you think you might like to do this let me know. If you want to do your own trip then full planning information is available at london-to-paris.winchcombe.org
I wrote this on a Facebook post back in 2016 but with many people adapting and sharing it I thought I’d blog it, with adaptions.
3242 days Amy has spent with this relentless condition, mostly always with a smile on her face, sometimes not, some days it’s fairly simple, other days/weeks/months not so much.
A ‘simple’ day means…
– her glucose levels are mostly in range; ‘range’ being a good word as for many glucose graphs look the Himalayas.**
– she has to take insulin to balance for the food she eats.
– which means she has to accurately know the carbs (& protein/fat) in what she’s eating. (No foods are off limits regardless of what some people think.)
– and once the insulin is taken she HAS to eat the food, even if she’s full or doesn’t like it. Otherwise she’ll go low, or hypo. ***
– she has to assess levels of exercise for that day and adjust insulin/glucose.
– she has to assess and adjust for stress too, and hormones, adrenalin and most recently alcohol.
– she still has to endure numerous pricks – mostly for checking her glucose level of course
And after all of this, if she does everything she’s meant to what reward will she get?
That’s the best we can hope for: that nothing happens.
* well it does suck but some days not so much, and there’s no doubt many good things, opportunities and friends have come from Amy having this condition. Amy nor us have a everyday hate relationship with Diabetes; would we rather it wasn’t here to stay? You bet.
** in real life the Himalayas are beautiful, some CGM graphs are similar, but whilst I loved seeing the top of Mt Everest with my own eyes I don’t feel the same about a rare 20mmol/L ‘Mt Everest’
*** luckily when she’s using a DIY closed loop artificial pancreas (Dexcom + AndroidAPS + DanaRS insulin pump) this will all be minimised, or hopefully completely avoided.
It seems like a long time ago from the World Diabetes Day 2018 post.
How things have moved on during the last year.
And Happy Birthday to this blog, 7 years old today!
Focusing on real life.
It’s been a year about real life, families, friends and fun.
A year when I turned 50 – I know what you’re thinking, I don’t look old enough, right?
A year when my wife Jane and I celebrated our 25th wedding anniversary.
A year where Amy studied hard and achieved her three grade-A A-levels and got top 2% of the country for her UCAT medicine aptitude test
A year which finishes with our eldest daughter Emilia booking her wedding date.
Looping, moving on and redundancy
Diabetes-wise Amy has got a new pump (DanaRS) which she part-time loops with using AndroidAPS. The looping’s going well, things are a lot easier for her when using it. She’s also moved from transition clinic to adults leaving behind many HCPs who’ve cared for her for many years.
In other diabetes news I’m largely redundant. Actually it’s been this way for some time, by design, and it’s all working out as planned. I’ve not been able to carb count for ages, I’ve never touched Amy’s new pump, I haven’t had Nightscout on my watch for ages although I still occasionally check that she’s still alive of a morning, I kind of feel that’s not a bad parenting trait, although I guess I’ll still be labelled as a helicopter parent by some.
Show me the money
A very hot June saw 12 of us cycle from London to Paris, cycling through 40 degree heat but more importantly raising £12,000 for JDRF.
The difference this year was 16 year old Jack, who smashed the ride, who could keep up with him up those hills, not me for sure.
A year of presentations about DIY looping
It’s been a busy twelve months for me presentation wise. Presenting at the Diabetes UK Professional Conference to a standing-room only crowd of hundreds, at two JDRF Discovery Days, the Diabetes Professional Conference in Olympia, during an education week for Diabetes UK employees, another one in Scotland, to many smaller groups. I really think my employer should give me some time off for this, to save my annual leave days being used up. Disclosure: yep, I got travel/hotels paid for, and food, plenty of food.
Honestly, I’ve seen each one as a privilege, each audience has been so receptive to looping, even if they feel the can’t endorse it. It’s been an honour to share the stage with some wonderful people who live with diabetes (PWDs) and some great Doctors who are pushing the bar up on behalf of PWDs.
Bigging myself up a little I do have a pretty shit hot slide deck 🙂
The most privileged presentations
For me my absolute favourite presentations have been DPC at Olympia, Scottish Study Group and the CYP Wessex & Thames Valley regional conference last week.
At each one I’ve stood alongside Amy as we’ve jointly delivered a presentation, or done our own individual ones.
It’s wonderful seeing your child delivering an engaging talk, responding to questions from the audience – okay, I *might* have thrown her in the deep end with a ‘you can take this one’ whisper at DPC – covering technical and emotional ground, and even presenting to every single HCP who’s ever provided her care.
10 events, to over 900 people between us during the last 12 months.
“I’ve had over 70,000 pricks… of the medical kind. This is my chance to set the record straight about type 1 diabetics like me. Despite what people say, I’m not bankrupting the NHS. And I can eat a cake – a whole bloody cake – if I want to.”
I’d seen it before, at TAD2019, along with my daughter Amy. We both enjoyed it and thought we’d go and see it again when it toured nearby. That was last night in Bournemouth, but typically the rest of my family were away, so I jumped at the chance to go with the Sugarbuddies support group I helped set up many years ago. I’ve been neglectful of Sugarbuddies for the last year, related to the lack of involvement I have in general Type 1 care for Amy, she does it all herself.
Even before the show it was a good night out, with a long chatty car journey with people I knew and people I didn’t, and more to follow in the bar before the show.
Wearing my ‘Deliberately Non-Compliant / WeAreNotWaiting’ t-shirt – which only comes out for diabetes events – I was spotted by a lady who saw me present at the JDRF Discovery Day in Southampton in March, and it was nice to hear how positive she found that event.
On to the show, which even watching for the second time, I thoroughly enjoyed. There were laughs a lot of the time, some gasps and an awful lot of nodding in agreement. The partially renovated Shelley Theatre must have been slightly dusty – ahem, not really – because at some points my throat felt tight and I could see others’ eyes were affected, coinciding with some of the sadder parts of the play and its tales of either Jade’s or others’ experiences.
Most of the audience had a connection to diabetes in some form, such as the guy sat next to me. “Do you know much about Type 1 Diabetes?” I asked. “I’ve had it twenty years” came the reply, before we had a nice chat about Sugarbuddies and what we’re trying to do with it.
For those who had no connection to Type 1, and for those who do, Jade held a Q&A session (luckily in the bar) after the event. What a great idea I thought, and it showed as people asked her questions and looked at some of the merchandise she had for sale. I stupidly sent Amy a picture of the Insulin Junkie sweatshirt to see if she’d like one, she did, I bought it – I should really keep away from Messenger, it would save me some money.
Although, this year’s tour dates are almost at a close I’d thoroughly recommend keeping an eye out for future performances.
A while ago the lovely people from Solent diabetes unit did an event for the public to find out their A1C – they used A1CNow kit. I had been aware of it for some time but the fact clinicians were using it – they probably had little other choice given the event’s location – I decided to buy some myself, for occasional home checking.
Here’s a video on how to use on, including my result which was a fair bit higher than last time:
It’s 6:30am and I’m awake now for the day, but I wasn’t woken up by any CGM remote monitoring alarms, nor clock alarms because I need to check Amy’s glucose levels, no, I’m just awake because it’s time to get ready for work.
Reflecting back to two years ago when I wrote The Nightscout and GCSE Game Plan it’s amazing what a change using a DIY closed-loop artificial pancreas system (DIYAPS) makes to all our lives. Amy’s currently using AndroidAPS, Dexcom G5 CGM and a DanaRS insulin pump.
Let’s do a comparison
Two years ago using only Nightscout remote monitoring I would set an alarm on each exam day around 5:30am to make sure Amy’s glucose levels were good and stable. One exam morning I was woken by a CGM alarm and this is what I saw:
Roll forward to today, no alarms, no early wake up, life as ‘normal’ as it could be, and I woke up to see this:
Amy’s current glucose target range is set as 5.3-5.5mmol. She’s woken bang on target, without alarms, wihout any checking or intervention by people, *just* FIFTY-EIGHT TBRs from AndroidAPS in the last 12 hours.
I almost need say nothing more at all, that picture conveys so much but it doesn’t tell you the full picture.
More than waking up on target
So looping makes sure she wakes up on target for each exam day but it’s so much more than that.
Amy has set her sights on studying medicine at university and becoming a Doctor, and whilst for this year no-one has offered her even an interview* she still needs to gain A or A* grades in her A Levels of Chemistry, Biology and Psychology. To do this is hard, damn hard and she’s been studying almost non-stop – hours every evening and most weekends – for two-years. For the last couple of months this has been ramped up and she barely has any free time.
Two years ago revision was just as full-on but it was broken up with hypos and hypers and occasionally a brain-fog which stopped revision in its tracks. Roll on to now, looping is keeping her levels as in-range as possible, and maximising the time allowed for decent revision which is absorbed.
Could it be any better?
Well, yes, it could.
Amy’s AndroidAPS DIY looping software runs on her phone, phones aren’t allowed in exam halls, so she cannot loop whilst doing the exams, some of which last many hours. She does of course start each exam perfectly in range (food consumption timing dependent of course).
This wouldn’t be any different if she used Loop as iPhones are required or OpenAPS where the software runs on a small computer, which also (probably) wouldn’t be allowed in the exam hall. If her looping software was on her pump then she would be able to loop all the way through the exams, so the Medtronic 670G would be a better option for exams.** UPDATE:So after writing the paragraph above this morning quite a few people said that their child had been given ‘reasonable adjustments’ to loop for exams, it got me thinking but I was sure we’d asked and was told ‘no’. I was wrong. Amy went hypo in today’s exam and due to other issues her exam invigilator called me, so I took the opportunity to ask her about Amy looping if her phone was given to the invigilator within a clear case. The exam invigilator said that would be fine and spoke about there being lots of talk around subjects like this in the various online groups for exam invigilators. It turns out we’d never asked properly but from here on in Amy will be able to loop during her remaining A level exams. Lesson learned.
*which is a shame for a A grade student, top third clinical aptitude test score in the UK, national conference speaking, bags of life experience, diabetes/tech knowledge ** okay, Medtronic, I’ll give you that one, but just for exams only right.
Last night’s clinic appointment was the quickest one ever, not that time is a measure of a successful appointment, but it felt really nice. Normally Amy has great chats and lot of time with her normal Consultant but this time she had a Doctor she’s only seen once, some time ago.
Other than clinic notes the new Consultant knew nothing about Amy’s history with the pumps, she’d never seen her/a DanaRS or knew that Amy has used DIY looping part time for a while now. (Amy’s not a fan of wearing CGM so has regular breaks from CGM/looping, her choice, it works well for her.)
As usual all the measurements were taken, then as soon as we’d sat down in the waiting room Dr L came to get Amy, who asked me to go in with her. She’s in transition clinic so naturally she takes the lead on whether parents go in, and she always wants us there, under no pressure I should add.
Dr L asks Amy how she is.
Amy feels good, explains her diabetes just started going well again after a worse time, without her doing any changes. She feels in control, everything’s fine.
Dr L: “That’s great. Do you have your Diasend reports, we had trouble accessing your account”
Amy explains we don’t really do that, we give them Nightscout reports as we fund CGM, so it’s better than a few BG checks per day.
Dr L hasn’t really seen Nightscout reports from us before, but we’ve given her a range of 1 week and 3 month reports (distribution/time-in-range reports, percentile (AGP-esque) chart, weekly success).
She’s pleased. “Look at those graphs, that night time section is really tight”.
Meanwhile the DSN asked if Amy was looping and after I nodded she explained to Dr L that Amy was looping with the DanaRS which she got in November. Amy estimated that she’s looped 60% or more of the time since December.
“These results are what we’d like to see for all our patients, well done.” said Dr L.
After the (not the most crucial thing but still interesting) HbA1C result was ready with its pleasing 0.4% drop since 4 months ago – which had dropped 0.4% from the one before – Dr L asked Amy some diabetes management questions (alcohol etc.), asked Amy if she had any questions (“No, I’m fine”) and we left.
Still had to blooming pay £1.80 for the car park though.
Two days after presenting about DIY looping at the Diabetes UK Professional conference, I had another groundbreaking experience: presenting #WeAreNotWaiting at a JDRF Discovery Day.Rolling back to January 2016, Amy, Stuart, Kate and myself presented to the board of JDRF, a wonderful team all amazed at what the WeAreNotWaiting community had done. “Would it be possible for us to present this at JDRF Discovery Days?” “No” came back the somewhat unsurprising answer, after all none of this is clinically trialled or approved. Many of us kept chatting with JDRF behind the scenes, keeping them abreast of last DIY tech, and were happy to see their open source initiative released in 2017.Late last year when I finally asked the same question again, receiving a “Yes”, which I then promptly forgot about what with the many other plates I’m spinning.Luckily Matt Guy (of Little D) was on the case and – with the help of JDRF’s wonderful Abbie – secured the first ever spot for WeAreNotWaiting to be spoken about in detail at a JDRF Discovery Day, the first of its kind. Wow, was this really happening? Yes, and we had a whole hour to talk about DIY tech solutions.
The agenda was set
Matt and his family’s journey with DIY tech is a rather good one, so he’d talk for 30 minutes. Tara would talk about her journey with Type 1 to building Loop, the DIY system which runs on Apple devices. I would then present a cut down of my WeAreNotWaiting talk, focusing on looping, explaining all the versions.
The day arrives
Setting up the Nightscout stands again felt so familiar, but today was different, and it meant quite a lot to be part of this. Matt and Tara arrived, plus over a hundred people and we were ready to go. Setting up alongside the pharma reps we’ve come to know very well, especially Helen and Jamie.
Matt’s journey using tech for his daughter (who has Type 1)
I could listen to Matt telling his story for hours, he’s such a great presenter, thought-provoking, funny, factual, and not to forget an all-round blooming nice guy (no pun intended). Speaking about diagnosis of his young daughter, their rollercoaster ride of diabetes and how they did anything to gain a slight advantage in managing his daughter’s diabetes. I remember well the day he set up the sound software to listen for the different beeps of a 640G pump, such a great idea.
Tara on using Loop for herself
Tara’s story is very different, diagnosed with MODY-3, and no chance of getting a funded pump she had to go down the DIY route. As an iPhone fan the best solution for her was to use ‘Loop’. Tara told me how nervous she was about presenting but you’d never have known, she spoke so well about her experience, about Loop and how it’s worked for her.
I first met Tara at a presentation I gave at the Sugarbuddies conference back in September, where I’d already tapped her up to talk about Loop for a few minutes, which got extended due to the interest in the audience. I feel Tara and I may become a local looping double-act and I’ve already asked her to help at a presentation in April.
And on to little old me
“My first thoughts on today?” I started, “are JDRF mad, letting us loose on the public?”. I wanted to highlight how things had moved on since 2015 when we started using Nightscout, how the charities and HCPs are reacting, and how this is now all clearly out in the open, and hence why we were there. 10 minutes was all I was meant to be on for, but if I’m honest the opportunity was so great to get so much across to so many that I deliberately overran by 50%….that’s only five minutes though, so not too bad. My online Prezi presentation is here if you want to take a look: bit.ly/jdrf190309 (although obviously context will be lost a little). As always I told people about what others are doing, and specifically that they needed to be sure it was what they wanted and be comfortable with what they were doing. It’s Do It Yourself but it’s not Do It Alone.
And what really matters…
The conversations which followed next mattered the most: JDRF were happy, we were happy, the attendees were happy. Immediately two people said they had all the tools to loop and would look into it. In the online forums there was some chats about the event, others ask for clarification about tech, or links to info, or ideas. By the end of the day 8 new people/families would be starting their journey towards looping, or using Nightscout. EIGHT!
Two weeks later
Two weeks on two of those families are already looping, first using an ‘open loop’ system with AndroidAPS, which as they learn and go through the objectives will allow them to close the loop within a short period.
“We’re thinking of running a DIY looping Hot Topic at the professional conference” the Diabetes UK Director told me, “and we’ll ask (Dr) Emma (Wilmot) to run it”. (A Hot Topic is usually quite a short session of 15 minutes or less.)
“Hi Emma, just a quick message to say xxxxx told me about your possible Hot Topic session at DUKPC. If you need any clean images for presentations I’ve got a fair few…” I tweeted privately.
[a few weeks passed]
Emma’s email arrived. “I am delighted to report that DUK are keen to include a dedicated session on OpenAPS at DUK…I was hoping you would be agreeable to presenting at this session”
From little acorns…
I was really pleased that the topic was a Hot Topic, let alone become a dedicated session, let alone that I’d get to present alongside my friend and utterly-brilliant-and-selfless-and-tireless-looping-support-guy Alasdair, alongside Dr Emma Wilmot and Dr May Ng, in a session chaired by Dr Partha Kar. Not only this, but the session was designed so that the patients (I’ll include me in that) got 30 minutes to present, the Doctors having 10 minutes each. This was a bit step forward in the DIY diabetes tech world.
Officially invited, this is happening
The official invite came, saying I could attend for whichever conference days I wanted, so without hesitation so with it being my first I chose all three.
I googled the venue and room plan, that’s good only about 50 seats, I’m cool with that. Either my googling failed me or someone realised they’d need a bigger boat room as this is what greeted me on Day 1. Even then, without an audience, I was getting heckled…by my friend Kelly.
Prep, prep, prep
Alasdair and I spent weeks trying to make sure we got all the important points into our presentation, making sure it flowed nicely and made (as much) sense (as possible). Revisions came and went, slides got deleted, new ones added and finally we had it, version 11, although if I’m honest v11 went to v11f. Working together over Skype was easy, a very enjoyable experience, but I’m not sure who’s more finickity about fonts/spacing/lining-up, me or him….probably me though.
No backing out now
As the day arrived I had no nerves at all, it was bizarre, I always feel a little nervous before presenting. I spent the earlier part of the morning listening to the fantastic Ellie talk about her transition, a sad and frustrating story which I never knew, even though we’ve followed each other on Twitter for ages.
The crowd came in, the session started, the nerves hit full on and I forgot to say most of my first slide. Damn it, Alasdair looked so in control, I was anything but. By the end of the first slide I felt relaxed and in control. The mind’s a funny thing.
My favourite part of any of my recent presentations is when I play the 70 second time-lapse video of AndroidAPS doing it’s magic, first with Amy’s glucose using TBRs (temporary basal rates) and next with Alasdair’s using SMBs (supermicroboluses). I love telling the audience what they need to keep an eye out for, then pressing play and watching the jaws drop as they see how it performs and realise what a Godsend any system like this is.
We moved on to describe the three systems (Loop, OpenAPS, AndroidAPS), how things have moved on with the algorithms, how the HCPs could help and more. When my final slide appeared ‘Useful Resources’ a hundred hands were raised snapping a picture of all of the links, and as they did my four scheduled tweets (#1,#2,#3,#4) went out on Twitter too.
It was over. I was relieved and sad that it was over, but mostly relieved. We’d done a pretty good job I think.
Dr Wilmot’s and Dr Ng’s presentations were fabulous, hitting all the right points, and the Q&A afterwards was excellent, with some Doctors suggesting they couldn’t support such initiatives and others say how Doctors absolutely should support whatever their patients are doing.
Within seconds of the session finishing Dana M Lewis messaged Alasdair and me to congratulate us, even though she was miles away, that was a nice touch.
Our presentation photos and slide deck
Thanks to Joanne Cura who took photos of virtually every slide so you get to see most of our presentation.
Checking the feedback
Many presenters say never to look at the feedback but for me it’s important, otherwise how can you assess if you need to change anything for next time?
I didn’t get to properly check Twitter for any chatter about the session until 1am, but these really made my day.
To have the honour of Diabetes UK’s Chief Executive, Chris Askew, attending our session when so many other great sessions were happening:
To the praise from Doctor’s who attended:
To the one which made all the efforts made by all involved so very worthwhile:
During the Christmas break whilst configuring my new Amazon Echo to use the already existing Nightscout Alexa integration, my Developer’s mind was curious how these Alexa ‘skills’ were created. I’d need an idea though, but what? What could I do? All the skills existed. Ok, let’s forget this idea.
I realised THIS would be my Alexa project. It would be great if someone could say ‘Alexa, ask T1Resources, what is Looping’, or WeAreNotWaiting, or AMA, or ISF etc..
And now they can.
You can start off saying ‘Alexa, ask T1Resources, what is…’.
You can say ‘Alexa, ask T1Resources, tell me a random word’.
Or even perhaps – just for fun – ‘Alexa, ask T1Resources, when will I be cured’.
Ask about any of the acronyms found used with the DIY looping systems, like ‘AMA’, ‘flash’, ‘putty’ or ‘SMB’.
Ask about standard diabetes terms like ‘ISF’, ‘CR’, or ‘bolus’.
Have some fun asking what is ‘rage bolus’, ‘unicorn’, ‘dana’, ‘chapstick’ or ‘leaky reps’.
You can ask what Nightscout is, or #WeAreNotWaiting or Looping, as I am here:
Adding the T1Resources Skill to your Echo
>Within you Amazon Alexa phone app:
– click the menu bars in the top left
– choose Skill & Games
– click the search icon
– enter T1Resources
– click T1Resources to view the skill info
– enable the skil
– you’re ready to try this on you Amazon Echo, or with your phone app.
Back in October whilst standing in front of 200 health care professionals at the Royal College of Physicians in Edinburgh, a not-so-immaculately timed* scheduled tweet announced my latest project as I presented about it to the audience*
*I was ahead in my presentation by two minutes. Damn!
Earlier in 2018 Dr Anna Dover tweeted about trying to find out what all the terms used by the WeAreNotWaiting community meant. It seemed like a good project and surely it would only take a day or two, right? Nothing ever goes quite as planned and knowing that I wanted to announce it as my presentation I hurriedly started writing it a couple of weeks before.
It turns out writing the web site for the dictionary was no problem at all, but getting all the definitions live was; I thought there would only be 50 or so and now in January we stand at over 270. It became quite difficult to determine what was just tech words and what also might be helpful, so I started putting lots of stuff in. Plus I’ve added some terms just for fun.
Here’s a sample look at the dictionary, where I’ve done a search for OpenAPS, which is highlighted in green and has the all related terms underneath. On the left is the latest 5 terms added to the dictionary, plus a random term for you to learn about.
If there are any terms not listed click the ‘Want us to add a new definition?’ link and say what you would like to find out about.
If there are any definitions wrong click the icon to the right of each explanation and let me know what to change.
A note about Open Source: I’d initially imagined this would be an open source project but with a lack of understanding about getting started with Open Source development with my personal development environment I just coded it up, in private. One day when I have a bit of time I’ll change that, but in the meantime if you want to get access to the data please contact me.
Thanks for Paul Niven and Dr Anna Dover for the help and inspiration with this project.
After buying my eldest daughter an Amazon Echo for Christmas we decided to get one for the kitchen, then I remembered that it was possible to integrate Nightscout into it.
Within 30 minutes of starting from scratch I had it all set up, it was good, it worked well. Being a programmer though meant I couldn’t stop there so I delved into the unknown world of Echo development and added a couple of questions, just for fun, for Amy (video: 20 seconds in). After showing some of my Diabetes Dad friends I added a third question (video: 40 seconds in) which is an in-joke between us all.
It’s been a year of changing pumps and a year of trying to change pumps.
It’s been a year of talking about #WeAreNotWaiting and a year of trying to talk about #WeAreNotWaiting.
Things are set to change quite soon.
It’s also been a year when Amy started looping, which is all just magical.
A few little things
Fundraising efforts for this year topped £14,000, for the team of 12 Diabetes Dads who were part of the London to Paris cycle trip I organised this year.
On 11th October I was proud to release the beta version of the T1Resources.uk Tech Dictionary, which I’d spent a few weeks creating. It launched to a lot of interest both by HCPs and PWDs – if you’re not sure what those acronyms mean then look them up in the dictionary 🙂
On its 6th birthday this blog has topped 172,000 views, despite its lack of posts this year.
Amy’s had a few pump changes this year:
Vibe -> MM715/OpenAPS -> DanaRS -> Vibe -> DanaRS -> DanaRS/AndroidAPS -> Vibe -> MM715/OpenAPS
At the time of last year’s World Diabetes Day / Blogaversary blog Amy was using her trusted Animas Vibe pump, which at that time was 5 months out of warranty. We were waiting – ah, the irony – for the right pump to come along, for the right choices to become available.
After watching mine and Dana Lewis’s talk at Rise of the Machines Amy decided that she wanted to use a DIY closed-loop system, using OpenAPS. I’d had the pump since late 2016, sat in the draw waiting for Amy to decide she wanted to use it.
Within a week she was up-and-running with it and it was working well.
July saw Amy start her trial of a Dana RS insulin pump for 4 weeks just using the pump and its phone app to control it, then she used AndroidAPS with the pump for another two weeks. Unfortunately the first DanaRS broke on a Friday in France, so Amy wore her backup Vibe until the new DanaRS was sent to use on the Monday. The Dana RS trial was a success.
She went back to her Vibe for a couple of weeks before going back onto her Medtronic 715 and OpenAPS when she put her next CGM sensor on.
Trying to Change Pumps
In September 2017 we requested to see the DanaR pump, but with a DanaRS due to be released we decided it was be best to wait (!).
I don’t want to disclose all that happened but in summary, the team were (quite rightly) wary of a pump they’d never heard about, so it took some time to convince them it was worth looking at.
We had some – let’s call them – discussions which got to the point of the team thinking we would move on to another clinic. I responded with this, which became a turning point in the discussions: “there’s no way I want to consider moving Amy elsewhere, however I’m very passionate about her receiving what we consider to be the best available pump on the market“.
My key message to others in this situation is: your team have a duty to make sure anything they provide is suitable; PWDs and parents have a duty to make sure their voice/opinion is heard and respected; there’s rarely a decent reason for a patient not to get the pump of their choice; there’s a rarely a decent reason for a CCG to not go with a Doctor’s pump recommendation; it just takes time and effort.
Amy receives her new pink DanaRS on the 29th November.
Talking About #WeAreNotWaiting
The day after WDD2017 Amy spoke at DPC17 in Olympia, her most important event so far, and alongside the lovely Philippa Cooper and Dr Sufyan Hussain.
This year, between us both, we’ve spoken at 10 events, to over 700 people.
Much of this is to HCPs which we do for one reason: so that it lets them know about what patients are doing so if one of their patients starts on it the HCP has a good understanding, which should help them support their patient.
The most recent one for me was at the Type1AndTech conference in Swansea last Saturday and if you’re interested the sessions were videoed.
Trying to Talk About #WeAreNotWaiting
Saturday’s Type1AndTech conference was a breakthrough, being the first time (I think) anyone has spoken about WeAreNotWaiting to an event organised by a UK Diabetes charity, namely Diabetes UK.
The landscape is changing, hopefully thanks to all the awareness so many in the UK, like us, are giving to organisations and HCPs.
Next Saturday my friend Craig will be talking about WeAreNotWaiting at the JDRF Leeds Discovery Day and I hope this will be the start of many events where PWDs/carers can talk about such technologies.
I recently discovered this video again, it makes me laugh, a lot.
Back 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.
Wait, what, you used the app in preference to AndroidAPS?
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?
The 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”?
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.