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WeAreNotWaiting at the Type1AndTech Conference

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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)

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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.

Type 1 and the NCS residential

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ncsNCS 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 Prom (44 of 44)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.
Gulp.

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.
smsI 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.
BG NCS

 

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.

The Nightscout and GCSE Game Plan

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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.
Capture

Game Plan

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?

Still learning

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.

From Night-crawler to Nightscouter, a Diabetes Mum’s story, by Lucy Veal-Johnson – Part 2

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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 wears first g4Sienna 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

sienna1Sienna 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

xdrip
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

xdrip3
xDrip fits nicely in a TicTac box
xdrip4

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.

Brighter days

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.

Step-by-step Guide to Soldering an xDripKit

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solderxDripKitIf you’re interested in building an xDrip but are worried about soldering all the components and wires together properly then a simpler solution might be to buy an almost ready made xDripKit.

It’s simpler to make and get working quicker, but for me personally I’d go for making my own xDrip from components everytime, they’re not so hard to build and you can make them smaller, or a more suitable design.

Here’s a step-by-step video showing just how simple it is to get an xDripKit device working.

httpv://www.youtube.com/watch?v=9UH7W8oFZdM

DISCLOSURE
This video has been made without any knowledge or involvement from Steve, the seller of xDripKit. No money, kit or even chat has been exchanged between us.

Promoting Diabetes UK’s 100Things book, World Health Day, and a short TV appearance

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Diabetes DadIn 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.

Tip43When 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!)”

I was pleased I got 43, it’s an old favourite Level 42 song of mine, although ’42’ would have been a better number of course.

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.

httpv://www.youtube.com/watch?v=QpFzpqN8iQA

*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.

Children’s and Young People’s Network North West Education Day – #CYPNW2016

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200?
Oh heck
Oh heck indeed

Back in January after presenting for my first time ever (outside of work) to a large audience of 30 at the TalkT1 event Dr May Ng and I chatted offline about my presentation. I wanted to know how the messages came across, how I came across and how it could have been better, just in case I was to ever present anywhere again. From my point of view I was so nervous it was difficult to gauge others’ impressions.
Then came Dr Ng’s little question: “are you free on 14th March?”. She was organising the North West Children and Young People’s Network Education Day and had a slot for a speaker.
“Yes. Is it for a talk or workshop?”
“A talk. 200 HCPs in Children’s & Young People’s diabetes attending for the annual education day”
200?
Oh heck.
Oh heck indeed.
I was pleased though, as Mike (of http://www.everydayupsanddowns.co.uk/) was going to be presenting there too, plus I’d get to chat with May and Francesca again, plus the chance meet some of the parent reps such as Nicky whom I’ve chatted to lots.
I’d also get the chance to include some Nightscout stuff in there too; just try and stop me talking about that eh?

Flying high on a Sunday

NWCYPsundayThe short flight to Manchester was my first ever domestic UK flight, great fun although I was quite nervous about the following day. Nervous but excited at the same time but somewhat wondering whether I’d regret my ‘yes’ to May two months earlier.
Mike and I had a great chat over a few beers and dinner, amazing that it was only the second time we’d met but it seemed like we were old friends, chatting about all the good stuff our other #DOC friends do, so many great advocates and great people. It was good to chat about some projects we’re involved in, some separately, some together.
It was funny when Mike asked me to double check his carb count of dinner as honestly I had no clue, this being one of the areas of T1 care Amy definitely takes care of herself; my memory isn’t a patch on hers.

A Day In Tweets

Before I continue I just want to point to Mike’s Storify of #NWCYP2016, summarising the day and its presentations via a series of tweets.

Dr Philip Weston

Dr WestonDr Weston’s presentation started with Autonomic Neuropathy and almost lost me within minutes; I feared today’s presentations might be too much for my little brain to understand but actually it was fascincating, and scary, but mainly fascinating.
The audience were asked to test their pulses whilst breathing in and out, and then holding and slowly releasing their breath, with the idea to see if their heart beat was changing. If it doesn’t this *may* be a sign. Read this for more info: http://www.mayoclinic.org/diseases-conditions/autonomic-neuropathy/basics/tests-diagnosis/con-20029053.
The non-HCPs I was sat next to all agreed it was one of the hardest (read: worrying) presentations we’ve sat in on.

Professor Helen Cooper

Helen2Not only leading in her field, Professor Cooper is proof that having Type 1 need not stop anyone and she’s proved this during the 50 years since being diagnosed. I find it wonderful being in the company of people with such experience and each one (Derek, Lis, Pat and now Helen) has a great and happy outlook.
Helen’s slides were gripping and fun, she spoke about learning being essential and said “there’s no end point, you are always working toward improvements”. Slides of landscapes spoke about the Mountains which resembled the high points and valleys which resembled the lows, reminding me that earth is not flat, life is not flat and it made me think about those flat CGM traces we all seek which don’t mirror those a person without Type 1 would show.

Dr Chizo Agwu

agwuDr Agwu presented about Toddlers with Type 1, something I’ve always been grateful we didn’t need to deal with: people often say they don’t know how families like ours cope, well I don’t know how families with toddlers cope.
It really brought it home when meal times were discussed, about how on earth can you give insulin in advance – something many people/teens/kids do – when you’re dealing with a toddler who just won’t eat something. I remember those days well and it was hard enough when we didn’t have insulin/hypos/hypers to deal with.
She mentioned something I’ve thought for a long time: that it is important to screen parents for depression. Absolutely correct, we’re all in it together and if the parents aren’t functioning the team is going to suffer.

Mike Kendall – Blogger, patient, all round nice chap

Mike1Mike is a natural presenter, eloquent, factual, meaningful messages and (sadly for me) too blooming funny: how on earth was I going to have the funniest presentation after his?
Mike told the room what life with Type 1 can be like, what just four blood checks a day means in reality – you’re in the dark for most of it. His analogy of life with T1 being like playing Scalextric with dodgy controls when a third of it is in a tunnel was brilliant, the room was in stitches. I secretly cursed our resident comedian and vowed to never present after him again (joking of course).
Mike went on to talk about things which help people deal with Type 1, such as the gizmos/tech and of course Social Media, which seemed to unsettle a few in the audience.
Mike’s was definitely the funniest presentation I’ve heard in a while. Or in other words…grrrrr 😉

Dr Ruth Krone

KroneDr Krone gave a great talk about the benefits of CGM and gave some real life examples of people who thought their diabetes management was excellent yet spent most of every night in a very long hypo.
She raised a very interesting point given that many are fighting for themselves or their kids to get fully-funded-full-time-CGM: Ruth told us that even where funding is agreed 50% of patients stop using CGM full time within 12 months. That’s staggering, maybe CGM is just unsustainable, maybe alarm fatigue, maybe wearing another device is too much. It reinforced my belief that having the one or two week gaps after every sensor are good for our family’s souls.

Some guy called Kev – clearly an idiot

KevAfter the tea break it was my turn.
I was nervous as hell but actually looking forward to presenting I took the stage.
I’ll go into detail in the next post but in short I gave an overview of Amy’s diagnosis, moved on to talk about the education we received and what I feel is important, and spoke a little about transition hopes and issues. Finally – and way over time – I spoke about Nightscout and OpenAPS.

Helen Thornton

helenDue to my running well over time Helen had little time left, I felt guilty.
She presented an updated web site named With You All The Wa, full of education tools for HCPs and patients, it looked great, it looked like it contained some really useful stuff for all of us.
A key focus was for individualised goals, targets and education; music to my ears.

End of a great day

I’d thoroughly enjoyed the day, even the presenting bit. Getting the chance to listen to professionals dealing with interesting and sometimes tricky subjects was enlightening. I was amazed how much I’d actually understood.
I was grateful for the opportunity – thanks May – to attend.
I was pleased to meet Nicky, Paula, the HCPs I spoke to and chat with Francesca again.
I was sad to find out I’m not as funny as Mike. 🙂

groupshot

Me, May, Mike, Helen

TADTalk2016 – Talking About Diabetes

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tad1Once again the Stupid o’Clock alarm rang again and a quick check of Twitter told me that I wasn’t the only one awake and excited that today was the first ever UK day of TED style talks from people who live with Diabetes.

I was going for three reasons.
First and foremost was to meet everyone, some I’d met before, others I’ve spoken to for years and would meet for the first time. I was excited to meet Sarah (the UK’s hardest working Nightscout support person), Rob who’d travelled from darkest beyond and Anne who was one of the speakers. On top of them there were probably another 3 dozen I was looking forward to chatting with. But first it was off to meet (for the first time) Amber who we were giving a lift to – I’d worked with Amber’s Mum for 20 years and never knew she lived with T1 until Amy was diagnosed. 17 year old Amber’s relatively new to the community, go and say hello on Twitter.
Second was to listen to some great talks, four of which were from people I knew quite well from SocialMedia or indeed Real Life.
Last but definitely not least was because I was part of the Nightscout faculty, present there to be on the special stand we’d been allowed to have, to allow us to help attendees understand more about Nightscout.

The talks

Strangely, for a blog about a Talking About Diabetes event, I’m not going to talk about the talks themselves. Others have already done this through their blogs. Here’s Amber’s, here’s James’s, here’s Matt’s and here’s Anne’s.
Saving the last word for one of the organisers of this event, Here’s Dr Partha Kar’s blog.
Instead I’ll focus on Wes’s talk as it’s very dear to my heart.

Listening with a lump in my throat – The Nightscout Story

tad_westalkWes’s Nightscout story started in an unfamiliar way for me, he was taking us way, way back to Picadilly Circus in 1966, the start of events leading to the birth of Lane Desborough who is dubbed The Grandfather of Nightscout – great video of Lane talking about Nightscout here if you’re interested. Lane went on to develop monitoring software which led to the backbone of the Nightscout web sites people like us use.
I already had a lump in my throat, especially because I knew at some point soon in Wes’s talk his story would get the better of him and the rawness of emotion would come through. You could feel it in the audience who at this stage hadn’t quite worked out what Nightscout really was.
willTADWes progressed to the Nightscout story quite familiar to me – due to the presentations I’ve been giving to JDRF, Diabetes and the CYP NW Network – from the beginnings from the “7 guys on the internet” who thought “maybe 50 families” might be interested in setting up Nightscout. Less than two years later 16000 people are in the largest T1 Facebook group in the World, with 6000 more in the 27 country specific Nightscout groups around the world.
Building on the lumps in peoples’ throats Wes gave more reasons why Nightscout is so important to so many people and spoke about the only ‘cost’ to a person taking on Nightscout, that ‘cost’ being to Pay It Forward and help others. From my side it’s truly a great community, everyone is there to help others and everything is open.
Open Source.
Open Data.
Open Hearts.
Wes gave good praise to the UK’s Nightscout Faculty – which I’m proud to be a part of – and to Tim Omer for his excellent work on OpenAPS and HAPP (although Wes accidentally said ‘xDrip’ by mistake).

Nightscout Stand

pratikOne of the highlights of being on the stand was when Pratik approached me with his team and asked for a quick run down on Nightscout, so that he could understand what his patients might be using or need to know.
The stand was really busy and I spent all lunch time chatting with those who knew nothing about Nightscout, or those who knew loads but had some questions, some who were struggling with issues, some who were struggling with the concepts, some who were just interested in my family’s use of Nightscout. I was pleased to introduce James to Matt for help on his project, and to signpost people to certain web sites.
If only I’d had the time to eat any lunch!

We need to talk about H

Oh. My. God.
I’ve never felt so embarrassed.
She approached the stand by herself about the same time as Pratik and I turned my attention to him (bad move Kev!) for what I thought was a quick ‘Hi’ but turned into something much longer.
After waiting a while she said ‘I’ll come back later’, I still didn’t recognise her or know her name at that point.
During the afternoon talks I looked around and saw her sat next to Izzy and it suddenly dawned on me who was there at the stand earlier and a pang of guilt ran through me.
Hannah, damn, it was Hannah.
Hannah, the lovely young girl from OopNorf who advocates so well, whose blogged I’ve read for ages, with whom I spoken on Twitter for years, with whom I’ve spoken via Google Hangouts, whom I’d never met.
Hannah, if you’re reading this: sorry, what a twerp I am but I’m so glad you came back to say hello again.

Chatting with the reps

With more talks during the after and some question time later I managed to grab a coffee and chat with Jenny from Abbott about the London Planetarium sleepover happending that night, an event Amy and I had been invited to but had declined. Hopefully there’ll be a few guest blogs on site, coming out of that event and use of Libre. I managed to sort out a trial for Amy – which she’d previously shown interest in – so watch this space for a Libre write up from us.

What a great event

It’s hard to imagine how TAD could have been any better and if it’s run again it’s hard to imagine who could be chosen to match the great line up of this year’s speakers.
To the Doctors who set this up, Partha, Catherine, Peter, I want to thank you, it was truly a brilliant day out and a great opportunity to meet friends and help others.

Basingstoke Type 1 Diabetes Awareness Evening 11/03/16

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The start of a whirlwind long weekend of diabetes events was an event organised by our clinic which jointly covers the Royal Hampshire County Hospital and Basingstoke Hospital, and their surrounding areas.

There was one last year and I found it really good, an opportunity to speak with our consultant outside of clinic walls, to mingle with other parents and grill the reps.

Truth be told I was rather nervous about attending this event.

The last time we saw the team was this fateful day back in January and my anger at the apparent complete disregard for our wishes almost saw us transfer elsewhere. So this would be the first time we met since that clinic. How would it go, would I lose it or could we still be ‘friends’?

I decided to put that last clinic down as a bad job, a mistake, a misunderstanding and walked into the room as if that clinic had never happened. And I’m so glad I did. Things appear to be back to normal although we’ll not know for sure until the next clinic.

These events are great for networking and we’d agreed to meet several people there; Steve and Becky; Matt, Sonal and their daughter who adores Amy. I bumped into Claire who runs the Basingstoke PWD group and I suddenly remembered I’m meant to be talking about Social Media and Nightscout there soon so I went over to discuss it. (*writes date in diary before he forgets*). Amy had made a little gift for Matt’s daughter who was thrilled.

The room filled with families and many of us left to listening to the Tech talk. Matt and I haad hoped to present Nightscout as part of this talk but its lack of clinical trials meant we were denied. Shame really as I think the parents needed to hear it, it would have been far more appropriate than talking about Smart Insulin etc.. But then again, there seemed to be so many families who nothing of this stuff. One person even asked if there was any truth that Reiki could help, something I consider as helpful to Type 1 as slapping, although hopefully less harmful.

Matt and I had joked that I’d ask a question after the session, that question being ‘Matt, what’s your daughter’s glucose level right now?’ and looking at his Pebble he’d reply ‘x.xx mmmol/l, how about Amy’s?’ at which point I’d look at my watch. We never did, I bottled it. It could have been funny though right?

The next session was about Transition and Amy and Jane sat in for that. I was gasping for a drink so headed out only to bump into fellow DiabetesDad and cyclist Gavin. Gavin asked if I could chat with him about Nightscout for 640g and I creased up as Matt (the 640g Nightscout solution provider) was a metre away. “Matt, meet Gavin” I mentally said Sorry to Sonal for given her husband even more support to do, although I’m pretty sure Gavin will figure it all out.

I never ventured back into the Transition talk and it’s probabably a good thing as Jane told me that apparently at the first transition clinic they see the kid first and then the parents and child together afterwards. So why on earth did they not do that with us? I just may have exploded if I’d been in there.

I had a chat to Emma, our pump rep, quizzing her on the rumours of Animas’s next pump name, release date and features. She’s good though and gave nothing away, thinking obviously that no-one in the community knows about the 2017 release date of the pump which like Medtronic’s 670g will feature a hypo and hyper minimiser. I already knew that this new pump will use Dexcom G5 as its base, we’d prefer G4 of course with its 4x longer lasting transmitter, but G5 will be awesome in this pump.

It had been a great night, lots of interactivity, lots of chats, lots of meetups and more importantly I’d not glared at the team.

JDRF Discovery Day Bournemouth 5/3/16

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nnn-JDRF logo cropped_2“Call me Kath” said Professor Barnard when I introduced her to Amy and Jane. Moments before I’d wished the earth would swallow me up as moments before that Kath had recognised me (from Social Media avatars/photos) and I hadn’t recognised her. A tad embarrasing and not the best first encounter. Still we we’re lucky that Kath could make it to the event as years ago I was almost responsible for her untimely death, after telling her how simple it was to replace a broken dimmer switch. Turns out it is simple if you’ve done it loads of times, not so simple if you haven’t. Anyway, I was pleased I hadn’t killed Kath and I’ll be careful not to discuss electrics with anyone else ever again.

Back in early November I had contacted JDRF South to ask if myself and others could present Nightscout at the Discovery Day in Bournemouth. Imagine that, presenting to a Discovery Day, little old me. I don’t even ask questions at events, let alone present but Nightscout is different, you know the world doesn’t know about it and you want to make people aware. Nightscout however is unregulated and has not past clinical trials so it’s very understandable that JDRF couldn’t let me talk about it.

And JDRF had other plans for the event in the form of the very well respected Professor Katharine Barnard. It’s unusual that a Discovery Day has just one speaker but when you’ve got the chance to give the floor over to a renowned Professor then you do, you most definitely do.

I’ve been fortunate to meet and chat with several Professors this year, Simon Heller, Helen Cooper and now Kath. Here’s the thing, they’re all normal, brilliant but normal, experts in their field, but normal. A far cry from the stereotype British films and TV would have you believe.

Being a mum of a child with Type 1 the down-to-earth Kath found a very warm and engaged audience. This was no presentation though, it was almost a chat amongst friends, a discussion group, a think tank. Laughter rang around, interspersed with more solemn moments as some said things they about Diabetes which have a negative impact. But Type 1 crowds are never down for long and out poured many positives.

Kath picked up on some points and told us it’s okay to feel like that, it’s normal. This meant a lot to many of us who naturally beat ourselves up on a daily basis for not doing quite as well as we think we should, or could. In reality we’re all doing an absolutely brilliant job, but how many of us actually recognise that?

One standout for me was something I’d read before but this time in sank in properly.
Kath asked “Well controlled Type 1 Diabetes is the cause of ?????’
‘Nothing’ answered Helen in the audience.
Absolutely.
We’re all so worried about complications but are actually helping our kids tremendously.
I walked away quite proud that we’re helping Amy achieve ‘nothing’.

In what seemed like no time at all Kath’s hour was up and we all felt sorry it was all over. But then it was time for the peer support socialising and properly chatting with Steve, Becky, Matt and Sonal as well as the usual JDRF Discovery Day chat with Lesley from INPUT.

I loved this Discovery Day and if I ever get the chance to see Kath present again I’ll be there. You should to.

Abbott Freestyle Libre, Nightscout and Glimp #WeAreNotWaiting

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We’ve been using Nightscout on and off for a year now, since I built our xDrip in January 2015. It’s been a brilliant tool and has helped reduce glucose levels, whilst evening them out too and giving us a safety net during the night. It’s availability on any browser, smartphone or smartwatch is just brilliant.

A friend whose daughter has used the Abbott Freestyle Libre for a year had followed our progress with Nightscout and told me how she would love it but just couldn’t see her daughter switching to DexcomG4.

It got me thinking.
I wondered if Nightscout could be beneficial to a Libre user and it suddenly dawned on me that it would be very useful for kids/parents in a preschool/school or sleepover situation: wouldn’t it be great if the school carer or sleepover parent could just scan the child’s sensor and the parent would remotely get to see the current glucose situation. If things are on track the parent can relax, if not they could perhaps call or text the person caring for their child.
Yes, using Nightscout with Libre had many possibilities.

It got me searching to see if there were any phone apps which could scan the Libre sensor and get the data onto a NFC compatible phone, that’s when I found Glimp. Glimp can already save data to Dropbox which means its developer, Carlo, is well versed in using cloud storage, Nightscout could be added if he had the time.
To use Glimp you need an Android phone with NFC compability, many Android phones have this feature…although typically not mine (MotoG 2nd edition).

Is anyone using Glimp?

I joined a Libre group on Facebook to ask if anyone already used Glimp. There were quite a few responses, many seemed keen on the potential.
anyone using glimp

Hey Carlo, would you mind…

A few days later I sent an email to Carlo who responded with much interest and started looking into Nightscout.
Email exchanges meant I could point Carlo towards the Nightscout API documentation and get John Costik and John Stevens on standby if Carlo needed assistance.
He didn’t.

A work in progress

Carlo was great at keeping me updated with his progress, which I passed on to the Facebook group.
It really didn’t take Carlo long to get data into Nightscout and by 18th December he’d emailed me some images to show others.
carlo is not waiting

The first results

On the 27th December – merely a couple of weeks after Carlo had all the Nightscout information he need – Carlo had it all working. It was time for a big announcemnt.
I was amazed at the number of people who wanted to test it and get Nightscout up and running.
glimp testers required

An untapped demand

In the next couple of weeks more and more people were setting it up, testing it and really loving it. There were a couple of reports of sensors dying but very few in comparison to the number of people using Glimp.
Parents really see a benefit in connecting Libre to Nightscout and that’s what this was all about.

Fancy using Glimp to get your Libre data into Nightscout?

You can find Glimp in the Google Play Store.
You can find the documentation on setting up a Nightscout web site and database at http://nightscout.info.
Once Nightscout is set up you simply going into Glimp’s settings and enter your Nightscout web site address and your special API key you set up during the Nightscout install.
And the best part? Everything is free.

Thank you Carlo

I can’t thank Carlo enough for linking Glimp to Nightscout, he really knows how to Pay It Forward.

Setting up Glimp and Nightscout

If you would like to set up Glimp and Nightscout please take a look at the guide Amy Cowen has done: Nightscout for FreeStyle Libre

Diaversary #5

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wpid-img_20150515_145525703_hdr.jpg
Amy at the Lilly National Paediatric Team
Conference in May

Another year passes, another 122 insulin pump set changes, another 3500 blood glucose checks, another 2000 carbohydrate guesses and insulin doses and numerous daily Type 1 Diabetes management tasks.

I’m no longer feeling the ‘Meh‘ I felt this time last year but I’m glad I felt like that then as it’s spurred me on for this year.

Amy’s diabetes management has never looked so good. She has – and we have – put a lot of work into getting her levels within range, her glucose fluctuations smaller. As a result her HbA1c yearly average looks favourably against the new NICE target of 6.5%. It’s no small feat, it takes a lot of work and I hope it isn’t taking its toll on Amy’s soul. Some days it appears it’s done with ease, others it’s a struggle, some days fluctating levels seem minimal, but rarely.

Dexcom G4 CGM, Nightscout and xDrip have played a big part in this year’s reduced A1Cs. I built our first xDrip in early January and it’s been used on and off since then – we self fund so full time CGM use is out of the equation. It’s given us lots of data to enable us to pin-point insulin:carb ratios, insulin sensitivity factors and durations, all of which are necessary to help with the many insulin doses and corrections required. We’ve got better at altering her basal profile, a task we do together, and this too has made a difference. After a trial Amy requested her very own white pebble watch to view her glucose readings on, leading me into a world of smartwatch envy which I just couldn’t battle for long 🙂 My watch will easily – and silently – wake me if Amy’s glucose levels drifts into areas we’d rather it wasn’t, meaning I can get up and treat her levels before she drifts back off to sleep and wakes up within range in the morning. I believe this management is priceless in enabling Amy to progress into the top sets of most of her school classes.

With all this CGM data there is a price to pay in the name of there perhaps being too much data. You can be teased into a world of constant alterations, boluses and TBRs and often it’s a good idea to take a step back. It’s a very fine line which I’m not sure we’ve figured out properly yet. That’s a good thing about enforced CGM breaks, no alarms.

I’m so proud of Amy’s management of her Type 1, she doesn’t sing and dance about it, she doesn’t seek limelight nor sympathy, she just gets on with it no matter how much it may hurt her body or mind that day. We give her the encouragement – sometimes a lot – she needs but ultimately she calls the shots. As time moves on she will call more and more shots but for the time being this is a joint effort through and through.

2016 is possibly set to be a great advocacy year, particularly for Nightscout and I’m proud that Amy will be by my side for some of this.

Open Loops, Closed Loops and Tim Omer’s Hackabetes Artificial Pancreas Project (HAPP)

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happ
HAPP – from Tim’s blog
www.hypodiabetic.co.uk

It was a turn of good fortune that Tim Omer’s presentation to the London Type 1s group fell on the same day as the Medical Technology Awareness Week Reception at Parliament I attended. I was looking forward to this event, it didn’t disappoint.

But first: That annoying Guardian article

Having created our first xDrip in early January and using it effectively since then I was more than pleased to read that Stephen Black’s xDrip design was at the center of his system. I was intrigued, I needed to learn more and an article about Tim in the Guardian gave me that chance. Unfortunately although Tim’s article from the Guardian in late October gave a great overview of what he was trying to do the journalist neglected to print any of the information Tim gave them about who designed the different parts. I’ll be honest, this annoyed me, it’s lazy journalism and I’m suprised the author, Lord Darzi, who has a medical and scientific vocation, did not list the relevant sources.

A bloody nice bloke

I’d never met Tim before but what came across strongly was that he’s very knowledgeable about everything Type 1 tech, whether it be at Dexcom G4 or G5, artificial pancreases, insulins, many types of bolusing as well as the tech stuff, like Bluetooth, RF and NFC to name but a few. He’s also a very nice chap, more than happy to answer any question to help the person asking, really Paying It Forward to make others’ lives easier. As Paying It Forward is my current voie de vie it’s clear Tim and I would get on well. Then add a love a travel and all round geekiness and it gets even better.

A brief history of time…it’s only three years long

Tim spent quite a while going through the history which led to HAPP, from John Costik, Lane Desborough, Jason Adams, Ben West and all the other Nightscout founders and developers, then onto to talk about Dana and Scott Leibrand being the first to ‘close the loop’ – that’s where the pump is controlled based on inputs from CGM data. He spent a good bit of time crediting those forerunners in enabling him to get where he is now.

Let’s talk about Loops baby

Let’s stop for a moment to talk about about loops.
An ‘open loop’ design takes CGM data and suggests actions, the pump is never touched, or even connected to the system.
A ‘closed loop’ will actually control the pump.
A ‘closed loop’ system is therefore probably what people would see as an actual artificial pancreas, it controls the pump to reduce or increase the level of insulin given. One type of a ‘closed loop’ system is that run by Dana/Scott and follows the OpenAPS method where it constantly puts on TBRs (temporary basal rates) and will potentially stop all basal insulin delivery for a moment of time, or increase the amount of insulin for a moment of time. This use of TBRs is for me an important thing as it’s a safety mechanism, given that it is constantly monitoring, calculating and adjusting. Just imagine what would happen if the system gave a 2 unit ‘correction’ and BGs started coming down rapidly, it couldn’t backtrack. That’s not the case with TBRs, much safer indeed.
I’ve seen the results of Dana’s system, it’s very, very impressive.
And it’s not just Dana: there’s 16 people who are running a ‘closed loop’ OpenAPS system. Amazing eh?
Going back to ‘open loops’, it’s just what we do already right, using Smart Meters or our brains? At the moment us parents and T1s make decisions many times a day about what action to take to amend a glucose level that’s heading out of range. But the problem is that emotion is brought into the loop (sorry – dreadful pun) and we end up over-correcting too often. And we have to think to take a look at the BG or CGM trend and do something. An ‘open loop’ sorts some of that out by using notifications and suggestions and of course you don’t need to accept the suggestion.

HAPPy days

So where is Tim now with HAPP? It’s at the ‘open loop’ stage, where it runs nicely on his mobile phone and sends notifications to his watch which he can choose to act on or not. Although I noticed I’m not sure that everyone realised that Tim had set a couple of TBR adjustments during his demo. At the end of the demo he showed us the results with his own Nightscout page and everyone could see the 0% TBRs he’d put on, which on HAPP had suggested and Tim felt comfortable with.

A HAPPy future

Once Tim has honed his current ‘open loop’ system he will be trying to move it to the ‘closed loop’ stage.
He’s determined, he’s knowledgeable, he’s very resourceful.
I’m sure he will get there and I wish him good luck.
Moreover, I really hope to get to meet him properly one day and have time to talk.

But what about us?

I’m very behind a homemade open loop system for Amy, I’ve got no problem with that, although I can’t imagine it’s anything we’ll look in the coming months. It could monitor Amy and give suggestions as to TBRs to put on and with her knowledge of what else is going on she could choose to action those suggestions or not.
Her choice.
So, no ‘closed loop’ desire for us them.
But if it were me…I’d already have a closed loop system or be working towards it. I’d leap into this technology because after all I’m a computer programmer so I could tailor it.
Amy can’t do that and I won’t mess with her health.

As far as all of us in that room are concerned…. #WeAreNotWaiting

Further information

The Guardian article about Tim’s HAPP
Tim Omer’s HAPP GitHub

Medical Technology Awareness Week Reception at the Houses of Parliament

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Parliament from inside the gatesThrough INPUT Diabetes I got a chance to get to see the Palace of Westminster for the first time AND talk about diabetes tech to anyone prepared to listen. Two birds, one stone, what could have been better. Well actually I attended another great event afterwards too – blog coming soon – , so three birds, one stone, if that’s a thing.

The Medical Technology Group’s event yesterday was hosted by John Pugh MP and part of the group’s Medical Technology Awareness Week. The event sought to get people together discussing technology used to help people manage their conditions. Type 1 Diabetes is clearly a condition which has benefitted from the tech available, in fact it’s hard to imagine a life now without it. Of course I realise how lucky we are to have all this, in fact I realise how lucky we are to be able to get insulin without issue.

Matt and I travelled up together and arriving at Parliament all suited up I cursed ignoring his advice to borrow a coat as ‘it’s bound to rain’, as it did, just as we were waiting at security under a torrential sky; so I entered Britain’s seat of power drenched and dishevelled. Through security tighter than Paris last weekend and into the main Westminster Hall and meet our friend Alistair (Samuelson) and all took a sneak peak at the MPs discussing things in the House of Commons.

On the day before I left I tweeted to several MPs from my local area: Mim Davies MP as she’s my local MP; Caroline Noakes MP as she’s a neighbouring MP and I knew she had an interest in Diabetes; Suella Fernandes MP as she’s the MP for where I work. Suella was not in London that day but I was amazed to get responses from Caroline and Mim – am I allowed to refer to them by their first name, what’s the protocol here?
tweetdavies

tweetnoakes

The event was held in the marquee overlooking the River Thames, a marquee I’ve seen so many times from the other side. Collecting my badge I heard my name mentioned, an MP was here to see me. Crikey! Already?

I spent a good few minutes speaking with Caroline Noakes MP about Amy’s diabetes tech, talking about how Amy’s pump is life changing and she’d never give it back. Caroline has an interest in Diabetes, I’ve seen this often in media articles and events, and it made explaining things a lot easier. Unfortunately though Caroline had to go to speak in the Further Education debate happening in the House so our chat didn’t last long but I was very grateful for the chance to discuss the life-changing tech Amy uses.

Off to find the insulin pump table provided by Roche where Matt, Alistair and I chatted with Lesley (INPUT) and Philippa, whom I know from the #DOC (Diabetes Online Community). Philippa had been before and this time was one of the speakers; she admitted to being nervous and I knew exactly how she felt from when I did the Nightscout presentations a few weeks ago. I knew Philippa would speak well, she’s a very level-headed, knowledgeable patient advocate and hearing her speak I felt quite proud of what she was doing and saying. The audience was engaged, people didn’t leave the room, they didn’t shuffle about and whisper, they were held there listening attentively to her story, to effectively Amy’s story, to the story of many of my friends. I thought she could do with some praise from the #DOCPhilippa speaks at Parliament

mimdaviesMy MP, Mim Davies, returned for a chat and we spent a long time talking about the medical tech which is life changing for Amy, how we get some of it from the NHS and how we self fund CGM. I couldn’t help but show her Amy’s glucose readings on my Pebble watch and go into (probably too much) detail about how Nightscout is an unfunded parent driven group with 15000 worldwide families using Open Source software. Mim seemed quite impressed with the whole thing. We chatted in general about Type 2 Diabetes as through my research I knew Mim had recently met with Jamie Oliver about the sugar tax proposal and I mentioned that this would cost people with Type 1 Diabetes more as sugary drinks are also life saving medicine when hypo.

I loved this event and would encourage you to go to it or similar if you ever get the chance.