#DUKPCInsider conference: hopefully the first of many

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.

TL;DR
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

180317, Kev explaining OpenAPS on the trainWith 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

180317, Pratik shout out to WeAreNotWaitingIt’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.

And finally

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.

The road to Amy’s DIY closed loop artificial pancreas #OpenAPS

Day 6, nicely in target

TL;DR
I built Amy a closed loop artificial pancreas
She’s been using it for one week so far
It’s great

 
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.

Last November I went along to a DIY closed-loop artificial pancreas build event hosted by the UK looping commmunity’s Tim Street, a tremendous driving force behind helping others to close the loop themselves, or understand and learn about it, or understand many different things about diabetes, plus he’s written a great guide to closed looping.

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.

OpenAPS rig Dean and pumpIt 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.

That day happened the morning after the Rise of the Machines event when Amy watched the presentation videos of me and then OpenAPS’s founder Dana Lewis, whom I had the great pleasure of introducing to Amy only a couple of days earlier.

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:
Day 6, nicely in target

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.
Distribution, day 8 for 36hrs