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.
“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:
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.
Yesterday I attended the first ever Diabetes UK Professional Conference (DUKPC) Insider conference, a spin off from this year’s annual 3 day professional conference which is open to only healthcare professionals (HCPs). The Insider was specifically for people with diabetes (PWDs) to attend.
Diabetes UK held an event for people with diabetes (PWDs) to hear some of the presentations held at their 3-day professional conference.
It was great.
I hope it’s the first of many
A bit of backstory
A few years ago no PWDs really attended the DUKPC, then Diabetes UK had the foresight to invite some lucky PWDs/carers who tweeted and blogged lots of information from the conference. This was great, there was such an appetite for the information.
For the following few years 5 PWDs/carers attended the DUKPC as winners of a bloggers competition and they all did a brilliant job of getting information out to us PWDs and carers.
This year, typically the year I was going to enter the bloggers competition for the first time, Diabetes UK decided to hold the Insider event, with the aim of effectively allowing 250 – not 5 – people to attend.
It was a good decision Diabetes UK, bravo.
Even the weather couldn’t stop us
With forecasts of a mini-blizzard hitting London I did wonder whether that one snowflake would mean all roads would be closed towards London, but I set off at an eye-blearing-6am, picking up my friend Anna on the way.
Once in London it wasn’t long before the inevitable PWDs-on-the-same-train happened, with Steph capturing me explaining Amy’s #OpenAPS to Anna.
Even the weather didn’t make us Grumpy…well maybe one
I couldn’t miss out the fact the DUKPCInsider gave me the chance to meet Chris, aka GrumpyPumper, for the fist time. I’ve known Chris for around 6 years now and somehow we’ve never found ourselves at the same event, which is remarkable as between us we’ve probably got them all covered.
It was a pleasure to finally meet the man who cheers up twitter when it’s down.
Wow, what a programme
The programme for the event was great and I was particularly pleased to see the calibre of presenters. Us Insiders heard from some of the most brilliant Doctors and Professors, the people at the top of their field.
The opening plenary from Professor Hattersley was outstanding, telling us all about the many types of Diabetes, told to us in a way that could be understood by the likes of me with my one O-level grade C in Art.
I’m not going to go through all the speakers sessions but each and every one was excellent and I felt privileged to be able to listen to them.
I can’t not talk about the tech though
It’s always a pleasure to listen to Dr Pratik Choudary speak, I love that he understands that achieving 100% time-in-range is an impossible dream for most, that 80% would be fantastic and that even his working pancreas doesn’t stay in range. I love that Pratik let’s his patients know about tricks he reads from PWDs tweets on Twitter.
I found myself nodding along in agreement with all his slides but couldn’t contain my happiness to see the slide on the right.
Later it went one stage further when in Dr Helen Murphy’s session about artificial pancreases she spoke about what the patients are doing and spoke about #WeAreNotWaiting and #OpenAPS again.
It so lovely to hear how much respect clinicians have for patient-led things. Bravo.
After Helen’s talk I went over to thank her and I was bowled over by everything she had to say about #OpenAPS’s closed-loop AP.
In the panel at the end #OpenAPS got another nod, this time from everyone’s favourite doctor on Twitter, Dr Partha Kar, when asked about the future for diabetes.
Three times in one event, I was honestly so surprised, and pleased.
A plea to Diabetes UK
Please, please run this event again.
With the conference being in Liverpool it will give the opportunity for many different people to be able to attend.
A final thank you
To Robin, for your talk about stigma and language, and inevitably one about Park Run which I thoroughly enjoyed. But thank you mainly for your tireless efforts to help bring events like this to fruition.
Having spoken with Chris Askew, Diabetes UK’s CEO, at the event I know Diabetes UK have ideas on how to further expand knowledge sharing. I’m really pleased to hear they’re looking at this.
I do think there’s scope for having a bloggers competition and the Insider event together and I hope they consider this for next year.
I built Amy a closed loop artificial pancreas
She’s been using it for one week so far
After getting into the world of #WeAreNotWaiting and Nightscout, I followed with great interest the progression of OpenAPS, a do-it-yourself closed loop artificial pancreas. I read the posts by Dana Lewis and Scott Leibrand with awe, wondering whether closed-looping would ever be something Amy might want.
If you’ve not heard about OpenAPS you might want to do a little reading first. In essence a matchbox-sized computer reads CGM data, figures out what temproary basal rate (TBR) could be used to help get levels on target and tells the pump to do the relevant TBR. If you’re worried it’s not safe, think again after reading this.
Back in October 2016 I decided I should gather the necessary kit together and should Amy ever want to close loop I’d be in a position to help. I’d need an old Medtronic pump, an Intel Edison chip and an ‘Explorer’ board. I sourced my first pump from eBay, it was no good, it was dead. The second was better and usable but I sourced a better third one, a 715, which I got from the Netherlands after asking all the right questions and requesting videos of it working.
I let Amy know that I had the kit should she ever be interested; she wasn’t. All the kit sat in a draw patiently waiting in a box adorned with a #WeAreNotWaiting sticker. Oh, the irony.
I had no intention of building anything but I went for the chat and to see what was happening, but I took my kit pieces with me. I came home with an almost working closed-loop artificial pancreas!
Amy seemed more interested now she could see something working.
Amy wasn’t using CGM at the time but my friend Alasdair let us use his CGM data from his Dexcom account to help me test, test and test the rig I’d built. It was working tremendously well, I watched in awe is it made the temporary basal rate changes which were sent to the pump – containing water and not attached to anyone.
A couple of weeks later my friend Craig gave us a G5 transmitter to help continue testing which I wore, along with the 715 pump pumping water for a few weeks. Thankfully my phone using xDrip+ worked well to collect the Dexcom G5 readings and my CGM trace was illuminating, a ‘normal’ person’s glucose line certainly isn’t flat, especially after eating my nemesis which is clearly bread.
It still wasn’t the right time for Amy, so I waited, applied no pressure and just hoped one day she’d ask to use it.
Roll on a week and Amy went live on her rig ‘Dean’ (Supernatural reference) which tells ‘Castiel’ (the 715 pump) what to do. It’s been a full-on learning week, with tweaks here and tweaks there.
We started cautiously, setting the target range to 7.0-7.5 mmol, something we’ll drop later when Amy’s feeling more confident. It’s doing very well and every morning is like this:
It’s already offering an improvement to less time spent hypo, or rapidly changing BGs, or standard deviation. More importantly Amy is having to make less decisions, or reactive actions. It’s important to remember this is the end of week one with a target set to 7.0-7.5, so it’s easy to see how A1C – if that’s what you’re worried about – can be lowered by dropping the target range.