DIY Looping at the Diabetes UK Professional Conference

DUKPC-KW-2“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”

*gulp*
Oh heck.
Yes.
Absolutely Yes.

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.
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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.
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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:
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To the praise from Doctor’s who attended:
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To the one which made all the efforts made by all involved so very worthwhile:
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And it was nice to make the cut of the conference summary video too.

WeAreNotWaiting at the Type1AndTech Conference

Yesterday saw a great conference in Swansea for PWDs*, organised by Diabetes UK Cymru lead Dai Williams and his team. It was an honour to be able present alongside many people I consider friends and I just loved everyone’s presentations.
*if you don’t know what PWDs are check out the T1Resources.uk diabetes/tech dictionary.

A UK conference breakthrough?

The conference marked quite a breakthrough as it is (I think) the first time a UK diabetes charity has asked people from the DIY tech community to come and talk to people with diabetes. Dai had asked myself and Tim Street to come and let people know all about Nightscout and talk in detail all about DIY closed-loop insulin pump systems such as OpenAPS, Loop and AndroidAPS.

Closed-Loop Sessions #1 – Dr Hood Thabit

Past, Present and Future

Dr Thabit was part of the Cambridge closed loop team under Professor Hovorka for many years and started off describing what a closed-loop is and why everyone prefers that term rather than ‘artificial pancreas’ – it’s only part of the pancreas’s job which is done by a closed-loop system, the rest works well.
Here’s Dr Thabit’s presentation:

Closed-Loop Sessions #2 – Me

Nightscout, #WeAreNotWaiting and Closed-Loops

I always think it’s good to let people know how Nightscout started although it pains me that I never have time to mention all the people involved, having instead only time to focus on a couple. So with the history of Nightscout done I moved on to talk a little about innovation and how it differs in the DIY world to commercial: PWDs just try stuff and if it works for them then great, if not they/others seek to build on or improve it. Moving on to DIY closed-loop systems I showed Dana M Lewis’s original rig – can’t believe I forgot to name drop her though :-/ – and then how things have advanced. My time-lapse video of Amy’s AndroidAPS trial played to a silent audience with some visible jaw dropping going on.
Apart from all the generated discussions which followed I’m really pleased people like Mel liked my slideshow, I just love Prezi.
Here’s my presentation:

Closed-Loop Sessions #3 – Tim Street

DIY Looping

Tim started his presentation asking the audience – and those watching the live stream – to vote on some questions he posed. It drew attention to the fact that people check their CGM/Libre many times a day, mostly once an hour, and after checking it 72% of people do something with the information they’ve just seen. Tim spoke about closed-loop systems doing some of this diabetes maths/adjustments for him and estimated that he saves one waking day of time per month now he uses a closed-loop system. He continued on describing the loop systems in detail, how the safety works for TBRs, components and providing lots of links for people to find out more.
Here’s Tim’s presentation:

Diabetes UK’s Conference Summary Video

DISCLOSURE
I got paid nothing for this, but I did eat a lot of cake and chicken skewery-thingys.
I was reimbursed travel expenses which meant I also got to stop en-route and see my friend Mike on the way.
I was put up in a hotel for the night before, but after being accosted by one of the local ladies and offered things that would make a docker blush I’m not so sure this was a benefit.

Standing on her own two feet (at DPC2017)

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.

PWDC15, A Diabetes Conference for PWDs by PWDs

Diabetes conference poster2015The dawn is rising on one of the most eagerly awaited days in the calendars of many people with diabetes (PWDs) in the UK, those that have been a part of the #GBDOC community for many years now, as well as people involved with Team Blood Glucose, who are sponsoring the event.

A little bit of history (as I see it)
#GBDOC was formed on Twitter by Paul Buchanan back in August 2012 and consists of tweetchats which have happened every week since then – Wednesday nights at 9pm until 10pm. The community goes far beyond the weekly chats and there’s now hundreds of PWDs who feel connected to a support group they’ve been missing beforehand and that’s a great thing.
Paul also created Team Blood Glucose with the mission statement of TeamBG inspires people with, and those at risk of diabetes to achieve their sports and exercise goals, to educate people with diabetes of the benefits of sports and exercise and to equip them with the tools to achieve their ambitions..

So why are we excited?
For me it’s simple, I don’t get invited to any of the ‘proper’ Diabetes conferences organised by Big Pharma or the big charities, so it’s exciting to actually get to go to one.
Actually though I’m far more excited about meeting many of the people I’ve spoken with online for a couple of years, some I’ve met before once or twice, some I’ve not yet met and some I’ll no doubt not recognise whatsoever today – people only ever pick their best photos for avatars don’t they?
The list of names is endless, Paul, Midge, Kaz/Max, Phillipa, Rachel, Steve, Paul S, Alex, Bob, Adrian and on and on but there’s one person everyone wants to see today, someone who through everything she’s gone through still makes us laugh everyday, someone who knows the benefit of this community, someone who’s willing to make a very big effort to get to this conference, yep, it’s Jules. It’s fair to say the highlight for many people today will be meeting Jules.

So what’s happening today?
I can easily answer that: I don’t know, no-one knows and that’s the beauty of it.
Today we will arrive, there’ll be an opening presentation or two and then the community will decided what happens for the rest of day.
I’ll not lie, this will be either mindblowingly brilliant, or erm, not. It’s probably the first time this has been done for any subject as part of an organised conference so we’ve got no history to learn from.
I have faith that this will work, the very loose format should mean that people get to do what they want, not what is dictated to them. At risk over over using a word today I think this is exciting.

A blooming big Tweetmeet
Many of you will know that wherever I go I will try and see any of my Twitter followers who are local as I feel it’s important. Mind you, I never get invited back, hmmmm, ha ha.
So if nothing else I am looking forward to a blooming big tweetmeet.

But I know it’s going to be so much more than that.