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.
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.
“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.
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.
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
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
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.
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.
Say 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.
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.
NCS is the National Citizen Service, a four week programme for school leavers which provides a great opportunity for helping people, self improvement, making new friends and most importantly having great fun. In some ways it’s replaced the Duke of Edinburgh scheme as a must-do for teenagers who want to challenge themselves and improve their CV, and it’s easy to see why as it’s normally done in the summer they leave school, bringing a welcome relief to the stress of sitting GCSEs.
Want to skim this post?
My take home message from this post is that NCS is great, Amy loves it.
Yes we had quite an issue with Amy’s glucose levels whilst away but NCS managed it brilliantly, we couldn’t have asked for a better response and resolution.
Most importantly, Amy is having one of the best times of her life – yes, even better than when I took her to see MY favourite band at a gig – I know, right!.
Diabetes didn’t stop her going, it was a bit of a pain in the arse to be fair but she’s done every single activity with 100% determination and effort.
If you want to read about the incident and how NCS dealt with it skip to the ‘Worst night ever…’ section below.
Never a doubt
Amy doing NCS was never a doubt, from the moment she heard about it she wanted to do it and we’ve supported that choice all the way. There were no real worries about Type 1 Diabetes causing her an issue and on reflection we as parents have been incredibly relaxed about it. In all the application process and meetings we’ve only asked one question of the team: “do you have a fridge for spare insulin”. They did, but it wouldn’t have mattered what the answer was, we were just interested.
A whirlwind few months for Amy
Amy’s spring and summer is a whirlwind.
First came the GCSEs (and the buckets of revision beforehand), then finishing school, then Prom, then three days later her NCS programme and its first week residential.
After NCS finishes she’s got a weekend to pack for our month in India, then two weeks after returning she’s off to college.
Because that’s not fulfilling enough she’s planning to do a tandem skydive in those “relaxing” two weeks. She’s saved her own money, she’s doing it by herself.
Maybe I need to rethink my “make your summer count” suggestion last year.
A little preparation for the residential
With our mind focussed on our summer trip to India we didn’t pay NCS preparation much time. Everything we were gathering for India was reduced and put into Amy’s suitcase, including pens+needles (which haven’t seen the light of day for years) and all the spare batteries and spare meters. We even put in a spare insulin pump just in case.
Normally when we go away as a family we forget certain things but it doesn’t matter because armed with a prescription, a credit card, internet on our phones, time and a car we can resolve most issues. Amy didn’t have the luxury of the last three so we had to make sure she had everything she might possibly need.
We’d informed NCS about Type 1, something they were well versed in already, and that was pretty much it. As far as the residential was concerned Type 1 wasn’t a thing, to us, to them, to Amy.
The insulin pump warranty situation
My slight worry about Amy’s residential was that she’s had her insulin pump for just over four years which means the warranty has run out. Whilst we can easily get her a new one we’ve chosen not to, until she decides which one to commit to for the next four years.
So that’s an out-of-warranty-will-not-be-replaced-if-it-dies insulin pump and activities like surfing, Total Wipeout and perhaps the most worrying for the pump, coasteering.
Week one excitement
NCS’s four week programme starts with a residential week away doing lots of activities on a daily basis. The first adrenalin-rush activity happens when the kids are dropped at the departure point and they get to meet everyone else for the first time, a brand new group of people and a week away from home, it’s a first for many as it was for Amy.
Worst night ever, NCS and Nightscout save the day
I don’t want to dwell about the situation on Tuesday night which at one point felt like the worst night anyone could have, but I know some parents of kids with Type 1 might be worried about how NCS themselves might deal with an issue…so…
Amy is currently wearing Dexcom CGM and using Nightscout, which means her glucose levels can be remotely monitored. I don’t monitor them but I wear a smartwatch which wakes me up if her levels become worrying.
I was woken at 00:30 on Wednesday, I looked at the CGM graph on my phone and waited. The numbers dropped further, and further and further still, way below the minimum number of 4mmol.
Eventually I texted Amy who was asleep and never woke.
I watched numbers in their 2’s appear, then 1’s.
I tried calling Amy, she didn’t wake.
I was confident this was a CGM calibration issue but I couldn’t just bat it off and do nothing.
Feeling sick and with tears in my eyes I eventually and reluctantly called the NCS support line and woke up Danny who calmly listened to my clear message of what I needed him to do (contact the leaders, wake Amy, check glucose level, give glucose probably).
Danny took control, contacted the leaders who were with Amy and did everything as instructed.
At 01:52 I got the best text message in the world, it was Amy who had just been woken up by the leaders. She was okay, after a glucose check she was 3.8, the whole thing was a calibration issue.
Throughout this time Danny had stayed awake, he hadn’t just passed on the info and gone back to sleep. He texted me to let me know Amy was okay and checked we’d been in contact.
Three leaders were awake with Amy throughout.
Amy had treated the hypo and was keen that the leaders’ night shouldn’t be disturbed and at 02:15 everyone went back to sleep, everyone except me as I couldn’t shake the sickness in my stomach. I just sat and stared at the Nightscout screen for 5 hours.
Remote monitoring, friend or foe?
On hearing the story one friend suggested it might be better not to know about the glucose levels.
My response is simple: By the time she was woken Amy was hypo and after (over)treating that hypo she dropped another 5mmol before over 4 hours. If I had not been woken up this real situation would have happened as early as 30 minutes later.
Everyone would have still been asleep, she wouldn’t have woken up, maybe ever.
Remote monitoring saved the day, without a doubt.
It’s 5am and I’m awake now for the day after being woken up by my Pebble smartwatch alerting me to Amy being hypo.
I’m not too bothered about the early start though as my alarm’s due to go off in a few minutes time as part of Amy’s GCSE Nightscout Game Plan, which aims to make sure Amy is perfectly in-range before she starts school on every day she has an exam.
Having in-range glucose levels means a couple of things for Amy: no extra stress on top of exam worries; being able to properly focus; more chance of her getting the results she wants.
So the Game Plan has been interupted by being a woken by a hypo alarm but it doesn’t matter as the key thing is that Amy will be in-range by the time she goes to school.
A break from Nightscout and CGM
I’ve been quite open about our recent lack of use of Nightscout, which feels strange given that I’m still presenting Nightscout to health care professionals. It’s always been about Amy’s decision to not want to wear any extra devices on her body (as well as her pump cannula). Amy made the choice to wear CGM and use Nightscout again because she knew it could help her through exam period.
Surely, a game plan is over the top?
Well, is it?
Amy is very close to being an A grade student and that’s something she wants, Jane and I have never put any pressure on her.
She has dreams of attending medical school and to be in the best place for that she needs three A-grade A levels, and to be in the best place for getting those she needs/wants A-grade GCSEs.
We’ve hardly seen her since January as each day after school she goes up to her room to chill out a little before picking up the revision books or doing practice exams.She’s done this virtually every day this year, plus weekends too, again it’s all her choice no matter how much we’ve tried to encourage more chillout time.
All this work could be undone by not being able to think properly during an exam.
Surely it would be silly not to use tools available to make sure Amy achieves her goal?
We knew yesterday that Amy’s overnight basal needed changing but decided against making any changes the night before an exam, we’ll do it tonight instead.
Which is all well and good except that now, on reflection, I can see that given her bedtime glucose level she was always going to go hypo early this morning. I feel a bit silly now but it just goes to show that even 6 years in we still make mistakes.
Just like the fact I put a 0% TBR on at 5am rather than wake her and feed her glucose, something I didn’t want to do just in case she stayed awake. I’m regretting that choice too.
Holding my nerve
The only question now is how long I hold my nerve, hoping the TBR works.
Good news though, it appears to be working.
Either you wish the world would swallow you up or you laugh it off, as you should.
Yep, that moment had happened again where Gav (@Diathlete) talks about running from John O’Groats to Land’s End, shows the photo of the support group including me, and then tells everyone he can run faster than I can cycle. It’s true.
Of course I don’t mind at all, cos Gav saved me: if he had not run 900 miles and needed a little support which I then gave for 4 days, then I would never have cycled 100 miles in 2013. Which led to finding something I love to do, cycling 2000 miles each year since, completing 100 miles/day rides, cycling to Paris twice. Thanks Gav, that’s down to you.
Yawn, yawn, yep, yep, rabbit, rabbit
The day had started early when at 6-something-or-other a.m. I picked up Kelly (@diabeticqueen1) who was my travel companion for the day. Like Chas & Dave’s famous song – Rabbit – she didn’t shut up the whole way, she was clearly as excited as half of my Twitter timeline was to be attending #TADTalk2017.
I didn’t mind at all, we had a lot to talk about what with various presentation collaborations, our Sugarbuddies peer support and our cycle together to Paris. I was keen to introduce her to lots of people I already knew and it made me smile when all I heard all day was ‘I love her/him’ as each speaker took their turn. Positivity is certainly the way forward.
A set of family speeches
Although we’d not met in real life before when Jen took to the stage it felt like I was watching a friend or member of my family up there on that stage, someone whose story I knew a fair bit but whose full story was unknown to me, a story which made me feel a little sad, a story which showed grit and a great outlook on life. The same happened when Gav floored us with his achievments, Roddy amazed us with his expeditions, Mel’s sporting achievements and finally Adrian with his story of never really speaking about Diabetes – he’s really turned that corner now.
Everyone so humble, so grounded, so unaware of just how bloody brilliant they are.
And they really are.
Loads of others have blogged about the speeches so take a look at their blogs: here, here, here, here, here.)
Three things which I thought were awesome
Let’s face it, the whole event was freaking awesome – hopefully Catherine, Peter and Partha know how grateful to them I am – and we are – for the event – but they were some stand-outs for me.
Three things which I thought were awesome – approachable people
Some of the people who attended not only went but made themselves approachable to the masses, and I’ll highlight Karen Addington, Chief Executive of JDRF UK. Let’s not forget that Karen herself lives with Type 1 Diabetes but it was great to see her there, and get the chance to have a good chat. I’ve noticed this before at Diabetes events, that CEOs and Directors of the charities attend and make themselves approachable. I’ll always remember being cheered on cycling up Newlands Corner hill on RideLondon 2015, only to find out later it was one of JDRF’s Directors.
At TAD we could freely have a chat with not only Partha and Catherine, but Bruce Keogh, Jane Cummings and Stephen Dixon too.
Three things which I thought were awesome – free beer
Diabetes UK’s drinks event after TAD had finished was absolutely brilliant and I want to thank them for doing that, they didn’t need to, but it really extended a great thing of the day…being able to talk to each other.
It gave us all another four hours or so or chat with our friends, some old, some new.
Thanks to Michaela and Sally for organising this and for the D:UK leads for allowing it to happen.
Three things which I thought were awesome – helping people with Nightscout/WeAreNotWaiting
I’d asked Partha and Catherine if Nightscout could have a stand at TAD, as we did the year before when we were supporting Wes, Nightscout USA’s busiest advocate.
Without hesitation they agreed.
Normally HCPs would say no, well let’s face it they can’t officially support something which doesn’t have the backing of clinical trials, and by some is seen as hacking.
I understand and expect the ‘no’s’ but it was lovely to have a ‘yes’ and I’m pretty confident I know why they agreed: ultimately they know Nightscout/OpenAPS/LOOP make a lot of difference to their patients and they want the best for their patients.
Us Nightscouters had travelled far and wide primarily just to be at the stand, yes we wanted to hear the talks but above all us we went to help people.
Rather than just Nightscout we opted for a #WeAreNotWaiting table and were delighted for Alasdair to join us with his OpenAPS and LOOP kit.
We had 5 Nightscouters and 2 Loopers present and each of us ended up speaking to a good few people, some learned about Nightscout for the first time, some had their nerves about setting it up quashed, many decided to set it all up soon.
For more info about Nightscout, either visit nightscout.info or join the Facebook groups: Nightscout UK; CGM in the Cloud; Nightscout for Medtronic.
For more info about creating a DIY artificial pancreas either visit openaps.org or join the Facebook group Looped.
For more info on getting your Dexcom G4 data available on a watch or website take a look at this page.
I met Lucy and her family about a year ago, at an event organised by the local (South Hampshire area) families support group, Seahawks. We’ve spoken quite a bit, through highs, through lows and one day I offered her the chance to tell her story.
Have you already read part 1, Night-crawler to Day-walker?
Here’s part two of a three part story.
A quick introduction to technology
Sienna wearing her first Dexcom G4 sensor
We were quickly introduced to Nightscout early after diagnosis as my best friend had a childhood friend in France and her little one had T1 (small world). We got talking on Facebook first and she told me of how they use this home-made computer like box and link it with a CGM (Continuous Glucose Monitor) so that they could see her levels on her phone or smartwatch anywhere. She could be at school and you could be doing the weekly shop and see her levels at any given time.
Later on this was to become the beginning of an end for my immense Night-crawling,
A hard smack in the face
Sienna has an awful hypo One reason why CGM is so useful
Having talked to the Psychologist and Diabetes team about how scared I was of losing Sienna in the night I asked about CGMs (Continuous Glucose Monitors) to be told that we were doing a fab job and didn’t need one.
As encouraging as that was it didn’t help much.
I took it as a hard smack in the face because I felt my fears and the tiredness were all getting too much for me to cope with. I started looking into funding our own Dexcom CGM as a way of seeing her sugars without having to prick her fingers, without disturbing her, without me or us getting out of bed to test her. To give us both that much needed rest.
The CGM would allow a sensor to sit underneath the skin and tests the fluid, which in turn would send her sugar levels to a transmitter, in turn sending it to a handset/receiver.
Nightscout was mentioned to us right from the start of her dx (diagnosis). I had a friend overseas to talk to about how she found it with their little one. She could see her little ones sugars on her smartwatch.
I am not going to wait
Sienna’s xDrip which I built myself
This new found technology was my way forward, I wasn’t waiting, I wanted to feel more settled and to fully be at ease in caring for Sienna but it all seemed a million miles away.
Nightscout was on the cards like a new goal I had to achieve and has now become a big part in how we care for Sienna.
I asked the team again about funding for Sienna and we were told this time that she would be funded by the NHS and that it wouldn’t cost us a penny. (How thankful are we to have an NHS system like this, but also a shame as really it does help more than they think).
But I would feel half lost if we didn’t have Nightscout.
Knowing that she would be funded we set about ordering some parts to build our own xDrip, this was the bridge between Sienna going anywhere without me and me wondering whether she was alright, say at preschool or going to see grandma, nanny and grandad, or friends and not worrying about the what if’s as I can see the what now’s.
Remotely caring for Sienna, together
xDrip fits nicely in a TicTac box
We can all be proactive in caring for Sienna as a family.
Sienna going off to preschool was a big issue for me as I felt that I would be out of control of everything. I felt that if I get it wrong I have only myself to blame, if someone else gets it wrong that would mean so much more. A mother will protect her young!! (but they are all trained in Type 1 and have a care plan).
With Nightscout I can now be sat at home knowing her sugars are fine as I can physically see them on my phone, just as good as the Dexcom, I can now leave her at total ease.
I cannot understand why the Nightscout has not been snapped up on the NHS? It should be. It gives parents that full peace of mind, it gives more than Dexcom can alone.
We waited too long to get funding to make this happen.
Parents, family, friends don’t want to wait, they have as much love for our little one as we do. It has been a massive positive for everyone and they feel more in control it’s the missing link. My advice is look into it, get it sorted, sort the levels and sort the stress that T1 as a whole brings.
Sienna is so brave as all our T1’s are, she makes my world a brighter place to be when I’m in her company and if she can be strong and not let it bother her then so can I. She is going to school in September and I can’t wait to watch her transition into year R and start her school Journey.
Together we will fight the T1 battle everyday but it does get easier and you start seeing the brighter side of things. Situations like how many different or unusual places have you found a used blood strip, how many times have you tried testing the wrong kid or how many times have you disposed of the food wrapper only to delve back into the bin minutes later because you haven’t checked the carbs on the back first.
But if all else fails know that you’re not alone, you really have thousands of friends all going through the exact same thing.
Thanks to all those people that made Nightscout possible for us, you really are something and beyond.
In what seems like a millennium ago I submitted some travel tips to Diabetes UK for their upcoming book 100 things I wish I’d known about living with diabetes. I instantly forgot about it until they contacted me to say out of the 1100 total entries one of mine had been picked.
When you’re travelling or going on holiday, double up on the amount of suppplies you need, split them across two bags and ALWAYS keep a hand on them. (Both of our daysacks fell out the back of a Tuk-Tuk in India just before a 15-hour train ride!)”
When the book came out I was pleased to see not only my tip in print but those of friends like Helen and some from celebs like TV legend Phillip Schofield and Hairy Biker Si King. Sylvia from Diabetes UK got in touch and I asked if I’d be happy to promote it, a media article maybe. “Of course, no problem”. The press release didn’t gather much interest except from a local TV channel.
“Would you go on TV Kev?” asked Sylvia.
“Erm, no thanks”. [repeat 100 times]
“Are you sure?”
“Oh, okay then” I relented.
My plan was that as That’s Solent TV only broadcasts in the region so I knew relatively few people would see it, especially if I didn’t tell them when it would be on.
Filming and clip release was planned for World Health Day (7/4/16) which this year was Diabetes related. Shan, the journalist, filmed lots of clips, some of me, lots of Amy and lots of Jane, both of which are far more eloquent than me. We spoke about the travel tip, Amy’s diagnosis, a lot on the DIY tech of Nightscout and xDrip, and Amy gave a demo of her latest gadget the Freestyle Libre from Abbott.
So many clips were shot for the proposed 3 minute clip and I wondered how on earth Shan was going to be able to create something from them, but she said well by focusing on information about the book and Type 1 diagnosis and symptoms. Shan did say later that she hopes to do a second clip featuring all the DIY/medical technology we spoke about.
I was really happy with Shan’s accuracy of information given all the bad press journalists get – due to Daily Mail articles, etc., so well done Shan.
All in all, I’m happy with the overall result although I’m likely to start a new book on video tips* Here’s the video, which in true Winchcombe fashion overran its original time slot by double, it ended up 7 minutes 10 seconds long.
*Kev’s Tips for being on camera
1) Tape eyebrows down and stop yourself from looking like you’re Roger-Moore’s-Eyebrow-Stunt-Double.
2) Don’t ever say the word ‘taxi’ as if the reporter has never heard that word before.
3) Don’t just tidy up the bits of the house you know the filming will take place in. Especially don’t move all the junk in the areas you clean up and put them onto the table they definitely won’t film.