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World Diabetes Day 2018 and Blogaversary 6

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wanw roller bannersIt’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.

Changing Pumps

OpenAPS rig Dean and pumpAmy’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

danarrs_03In 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

fKFzL8we_400x400The 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.
Crikey!
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.

And finally…

I recently discovered this video again, it makes me laugh, a lot.

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.