DIY looping: a fine Balance

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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.

Here’s a link to the web version of the article: Diabetes UK: In the Loop, which is similar but different to the Balance article, so why not take a read of that (too).
If you would like to receive future copies of Balance then why not become a member of Diabetes UK.

Interested in looping? Read Tim’s guide to looping first, and join ‘Looped UK‘ and/or ‘Looped‘ on Facebook.
Interested in Nightscout? Join ‘Nightscout UK‘ and/or ‘CGM in the Cloud‘ on Facebook.

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DISCLOSURE
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.
DISCLAIMER
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.

A simple day

I wrote this on a Facebook post back in 2016 but with many people adapting and sharing it I thought I’d blog it, with adaptions.

nothingDiabetes sucks.*

3242 days Amy has spent with this relentless condition, mostly always with a smile on her face, sometimes not, some days it’s fairly simple, other days/weeks/months not so much.

A ‘simple’ day means…

– her glucose levels are mostly in range; ‘range’ being a good word as for many glucose graphs look the Himalayas.**

– she has to take insulin to balance for the food she eats.

– which means she has to accurately know the carbs (& protein/fat) in what she’s eating. (No foods are off limits regardless of what some people think.)

– and once the insulin is taken she HAS to eat the food, even if she’s full or doesn’t like it. Otherwise she’ll go low, or hypo. ***

– she has to assess levels of exercise for that day and adjust insulin/glucose.

– she has to assess and adjust for stress too, and hormones, adrenalin and most recently alcohol.

– she still has to endure numerous pricks – mostly for checking her glucose level of course

And after all of this, if she does everything she’s meant to what reward will she get?

Nothing.

That’s the best we can hope for: that nothing happens.

 

 

 

 
* well it does suck but some days not so much, and there’s no doubt many good things, opportunities and friends have come from Amy having this condition. Amy nor us have a everyday hate relationship with Diabetes; would we rather it wasn’t here to stay? You bet.

** in real life the Himalayas are beautiful, some CGM graphs are similar, but whilst I loved seeing the top of Mt Everest with my own eyes I don’t feel the same about a rare 20mmol/L ‘Mt Everest’

*** luckily when she’s using a DIY closed loop artificial pancreas (Dexcom + AndroidAPS + DanaRS insulin pump) this will all be minimised, or hopefully completely avoided.

World Diabetes Day 2019, Blogaversary 7 and Privileged Presentations

KevAmyDPC1It seems like a long time ago from the World Diabetes Day 2018 post.
How things have moved on during the last year.
And Happy Birthday to this blog, 7 years old today!

Focusing on real life.

It’s been a year about real life, families, friends and fun.
A year when I turned 50 – I know what you’re thinking, I don’t look old enough, right?
A year when my wife Jane and I celebrated our 25th wedding anniversary.
A year where Amy studied hard and achieved her three grade-A A-levels and got top 2% of the country for her UCAT medicine aptitude test
A year which finishes with our eldest daughter Emilia booking her wedding date.

Looping, moving on and redundancy

Diabetes-wise Amy has got a new pump (DanaRS) which she part-time loops with using AndroidAPS. The looping’s going well, things are a lot easier for her when using it. She’s also moved from transition clinic to adults leaving behind many HCPs who’ve cared for her for many years.
In other diabetes news I’m largely redundant. Actually it’s been this way for some time, by design, and it’s all working out as planned. I’ve not been able to carb count for ages, I’ve never touched Amy’s new pump, I haven’t had Nightscout on my watch for ages although I still occasionally check that she’s still alive of a morning, I kind of feel that’s not a bad parenting trait, although I guess I’ll still be labelled as a helicopter parent by some.

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Show me the money

A very hot June saw 12 of us cycle from London to Paris, cycling through 40 degree heat but more importantly raising Ā£12,000 for JDRF.
The difference this year was 16 year old Jack, who smashed the ride, who could keep up with him up those hills, not me for sure.

A Diabetes Dad

A year of presentations about DIY looping

It’s been a busy twelve months for me presentation wise. Presenting at the Diabetes UK Professional Conference to a standing-room only crowd of hundreds, at two JDRF Discovery Days, the Diabetes Professional Conference in Olympia, during an education week for Diabetes UK employees, another one in Scotland, to many smaller groups. I really think my employer should give me some time off for this, to save my annual leave days being used up. Disclosure: yep, I got travel/hotels paid for, and food, plenty of food.
Honestly, I’ve seen each one as a privilege, each audience has been so receptive to looping, even if they feel the can’t endorse it. It’s been an honour to share the stage with some wonderful people who live with diabetes (PWDs) and some great Doctors who are pushing the bar up on behalf of PWDs.
Bigging myself up a little I do have a pretty shit hot slide deck šŸ™‚

20191108, Amy and Kev, CYP conference

The most privileged presentations

For me my absolute favourite presentations have been DPC at Olympia, Scottish Study Group and the CYP Wessex & Thames Valley regional conference last week.
Why?
At each one I’ve stood alongside Amy as we’ve jointly delivered a presentation, or done our own individual ones.
It’s wonderful seeing your child delivering an engaging talk, responding to questions from the audience – okay, I *might* have thrown her in the deep end with a ‘you can take this one’ whisper at DPC – covering technical and emotional ground, and even presenting to every single HCP who’s ever provided her care.
10 events, to over 900 people between us during the last 12 months.

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photos credit Damian Prestidge

Quickest clinic appointment ever

20190519, distribution cut downLast 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.

20 minutes.
Still had to blooming pay Ā£1.80 for the car park though.

World Diabetes Day 2018 and Blogaversary 6

wanw roller bannersIt’s been a year of changing pumps and a year of trying to change pumps.

It’s been a year of talking about #WeAreNotWaiting and a year of trying to talk about #WeAreNotWaiting.

Things are set to change quite soon.

It’s also been a year when Amy started looping, which is all just magical.

A few little things

Fundraising efforts for this year topped Ā£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 šŸ™‚
On its 6th birthday this blog has topped 172,000 views, despite its lack of posts this year.

Changing Pumps

OpenAPS rig Dean and pumpAmy’s had a few pump changes this year:
Vibe -> MM715/OpenAPS -> DanaRS -> Vibe -> DanaRS -> DanaRS/AndroidAPS -> Vibe -> MM715/OpenAPS
At the time of last year’s World Diabetes Day / Blogaversary blog Amy was using her trusted Animas Vibe pump, which at that time was 5 months out of warranty. We were waiting – ah, the irony – for the right pump to come along, for the right choices to become available.
After watching mine and Dana Lewis’s talk at Rise of the Machines Amy decided that she wanted to use a DIY closed-loop system, using OpenAPS. I’d had the pump since late 2016, sat in the draw waiting for Amy to decide she wanted to use it.
Within a week she was up-and-running with it and it was working well.
July saw Amy start her trial of a Dana RS insulin pump for 4 weeks just using the pump and its phone app to control it, then she used AndroidAPS with the pump for another two weeks. Unfortunately the first DanaRS broke on a Friday in France, so Amy wore her backup Vibe until the new DanaRS was sent to use on the Monday. The Dana RS trial was a success.
She went back to her Vibe for a couple of weeks before going back onto her Medtronic 715 and OpenAPS when she put her next CGM sensor on.

Trying to Change Pumps

danarrs_03In September 2017 we requested to see the DanaR pump, but with a DanaRS due to be released we decided it was be best to wait (!).
I don’t want to disclose all that happened but in summary, the team were (quite rightly) wary of a pump they’d never heard about, so it took some time to convince them it was worth looking at.
We had some – let’s call them – discussions which got to the point of the team thinking we would move on to another clinic. I responded with this, which became a turning point in the discussions: “there’s no way I want to consider moving Amy elsewhere, however I’m very passionate about her receiving what we consider to be the best available pump on the market“.
My key message to others in this situation is: your team have a duty to make sure anything they provide is suitable; PWDs and parents have a duty to make sure their voice/opinion is heard and respected; there’s rarely a decent reason for a patient not to get the pump of their choice; there’s a rarely a decent reason for a CCG to not go with a Doctor’s pump recommendation; it just takes time and effort.
Amy receives her new pink DanaRS on the 29th November.

Talking About #WeAreNotWaiting

fKFzL8we_400x400The day after WDD2017 Amy spoke at DPC17 in Olympia, her most important event so far, and alongside the lovely Philippa Cooper and Dr Sufyan Hussain.
This year, between us both, we’ve spoken at 10 events, to over 700 people.
Crikey!
Much of this is to HCPs which we do for one reason: so that it lets them know about what patients are doing so if one of their patients starts on it the HCP has a good understanding, which should help them support their patient.
The most recent one for me was at the Type1AndTech conference in Swansea last Saturday and if you’re interested the sessions were videoed.

Trying to Talk About #WeAreNotWaiting

Saturday’s Type1AndTech conference was a breakthrough, being the first time (I think) anyone has spoken about WeAreNotWaiting to an event organised by a UK Diabetes charity, namely Diabetes UK.
The landscape is changing, hopefully thanks to all the awareness so many in the UK, like us, are giving to organisations and HCPs.
Next Saturday my friend Craig will be talking about WeAreNotWaiting at the JDRF Leeds Discovery Day and I hope this will be the start of many events where PWDs/carers can talk about such technologies.

And finally…

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

Diaversary #7 – A New Chapter – Amy’s boyfriend’s honest thoughts

Amy and her boyfriend, Kalvin, have been together for six months today so it seemed fitting that he was offered the chance to write this year’s Diaversary post.
These are (16 year old) Kalvin’s honest and open thoughts on what Amy’s diabetes means to him, how it’s affected him and how he sees it affecting her/them.

Anyway, over to you Kalvin.

Amy and Kalvin

I met Amy on NCS six months ago. I found out she had Type 1 almost immediately. Naturally like everyone else, I didn’t really understand what it was, the dangers and just any of it really. Diabetes is definitely confusing. Take it from me. I have been Amy’s boyfriend from nearly the first day I met her – don’t ask, it wasn’t one of those cheesy ‘love at first sight’ moments you see in films.
Even with diabetes, everything she has achieved and is able to achieve today is remarkable. It just proves that it doesn’t have to be the end of the world for anyone. It’s simply a new chapter.

My first hurdle with Amy was NCS itself. On our first week together, the sudden realisation that diabetes was definitely real and definitely impacting her hit me like a truck, as it had certainly hit her on day two. Day. Two. I found out that morning that Amy’s levels had supposedly dropped below one. Thankfully, they hadn’t and it was a simple tech glitch, but her levels were dropping that night and if no one had intervened, well it’s something I don’t like to think about. The rest of NCS was just perfect. I know, it had only been a few days and suddenly I was a part of her life. Getting to know her, getting to know what life was like when she was younger. It definitely impressed me how well the family had managed it after seven years.

I knew that Amy would be having a holiday in India that summer. What I didn’t realise is that they would be gone a month. It’s this kind of trend that’s been worrying me throughout my time with her. Completely fearful, rushing at every moment I got to text her, make sure she was still there. The scare during NCS had and still makes me paranoid that something could happen.
Maybe it’s because I don’t know what its like. Kev and Jane, (her parents, though I doubt you’d have made it to this page without knowing who they are), have been forced into making sure she is okay. From what I’ve read and seen, they do a brilliant job at it. Yet I still worry that something could happen to her. If something happened when we were in public, what would I do? It’s all been a rush for me. A constant flow of information, trying to learn and keep up with what they know, what to do if her levels drop, how to make sure she is okay at all times.

After India and finally being able to relax a small amount, I knew that I would rarely be able to see and know for sure she was fine. With me working weekends and both of us just starting college, we were both gonna be super busy all the time. I wouldn’t be able to see her as often as I had over the summer, excluding the month away. I can remember one night where I didn’t sleep. I couldn’t. Just in case she called and something was happening and she needed me. There were too many what-ifs.

I found out about this blog a few months back. It has been an absolute gift. I know Amy so much better now and I know the condition slightly slightly more now, even if I still get confused with bolus. If you’re new to this whole get-up, you’ve got to do your reading early, else you’ll be a nervous wreck like me! And no one wants that. Probably.

Not really much has happened since then. My sleeping has got better now I’m more comfortable with the risks. I don’t get completely terrified not knowing what has happened that day. Amy has certainly been a wake-up call for me to care about others as much as myself, and in her case more. I’ve learned so much from their family. The best advice I can give is to listen to every word that you’re told because the family of a diabetic girl is very, very smart when it comes to it. Anything I need to know/want to know/will probably be useful to know if I need to do emergency things can be told to me whenever I need to/want to/should hear it.

At the end of the day, I would give anything just to make sure she doesn’t have to do another set change, or give herself insulin for a meal. I would take her place in a heartbeat. I don’t want to think about what could happen, what nearly has happened.

Amy – I can’t wait to see you this time next year. Who knows what the future holds for you?

Global Diabetes Day 2017 and Blogaversary 5

Okay, I know, it’s really World Diabetes Day but for reasons which will become clear later I’m calling it Global Diabetes Day this year.

It’s been in some ways a busy year, in some ways a quiet year, since 2016’s World Diabetes Day blog.

bannersIt started with Amy and me presenting Nightscout, WeAreNotWaiting and DIY artificial pancreases to the team at Oxford in January and ends (almost) with Amy presenting with Dr Sufyan Hussain at the Diabetes Professional Conference 17 at Olympia this coming Thursday and me lecturing at South Bank university a few days later. I’ve been really pleased to meet so many teams and HCPs who want to know more about what patients are doing and one day, who knows, I might actually feel comfortable presenting. Nightscout UK had a great weekend at the Children With Diabetes Friends for Life conference in October where we used for the first time the roller banners I created. October saw Amy and I attend the QiC Diabetes Awards which I helped judge this year, walking away with a Winners trophy for T1 Resources and collecting the People’s Award trophy for my friend Sarah Davies who works tirelessly supporting families and adults who are using Nightscout.

Enough about us, and back to Global Diabetes Day.

On Saturday I went to the premiere of the #T1DGlobal17 video, a day for people with diabetes and carers, organised by Gavin Griffiths, who had been sponsored by Sanofi Diabetes to visit lots of different places around the world, chatting to T1 groups and doing some exercise classes and events with them. Saturday saw the premiere showing of the film of that trip but Gavin made the day much more than that, including multiple panels of people discussing different topics. I was astounded at the work being done by all (Chris, Bri, Sara, Shelley, Rebecca) but the standout for me was Jacq for the amazing work she has done with DWED (Diabetics with Eating Disorders) for people with Diabulimia, a condition some few have heard about but a condition that as a parent of a teenage daughter with Type 1 I have previously worried about.

diathletes

The best part of the day for me came later when Gav’s League of DiAthletes took the stage, each one telling us what life was like for a person with Type 1 in their countries of Ghana, Kuwait, Pakistan, Brazil, Costa Rica, Australia, Ghana and the Republic of California as Gav liked to call it. The stories range from good to bad but they had one thing in common: the work being done by the people for the people was amazing. Communities pulled together to help others live their lives. The world is a much better place because of the likes of Fred, Mohammad, Sana, Naty, Dani, Paula, Lucas, Nikki and of course Gav.

It made me think a lot, it was very humbling.

Here we are looking at which insulin pump Amy is going to get next, arguing for the pump we want rather than what the clinic have offered, having the options to try the latest insulins, deciding whether Amy prefers this cannula or that, this meter or that, this insulin or that. We moan about not having funded CGM, or currently the lack of CCGs funding Libre. At no point ever have we faced the issues that any of the League of DiAthletes face every day. We don’t need to fight for anything that Amy actually needs – not wants – to live. We are very privileged to be in this position. We are very privileged to have the NHS.

And that leads me on to one of my favourite speakers from Saturday, Elizabeth Rowley who runs T1International. Elizabeth, wearing her t-shirt emblazoned with ‘Access to Insulin is a Human Right’ spoke about the fantastic work T1International is doing, about their work with the #InsulinForAll movement which has always been brilliant but even more so now with the crisis our friends in USA are facing with the cost of their insulin, a so-called rich country where people can’t afford insulin. It’s mad.

Diaversary #6 – A New Hope for a Rogue One

a_long_time_agoFeelings on diaversary days fluctuate from year to year, a couple of years ago I was lost, last year not so much.
I apologise in advance for words so mixed up they’d feel more at home in an Alanis Morrisette song.

In a hospital far, far, away

The Imperial Forces of Langerhans attempted to hold Princess Amy hostage six years ago but the Rebel Forces managed to get her back and into safety since. The Empire tried to Strike Back in January and capture the Princess in its Death Star, which it calls ‘transition clinic’, but it was no match for the Rebel Forces who floored them and their evil plans with a polite ‘No’.
(I’m tempted to throw in references to Ewoks here but I won’t.)
By the end of the year the Princess decided she was happy to move to the Death Star though, so the Rebel Forces accepted this happily, after all it’s her life.
My role in this saga is of course Chewbacca defined by my inability to say much of use and the need for a shave.

Who said hospital food was bad?

The hospital’s canteen is good, even if their trays are a little damp.
httpv://www.youtube.com/watch?v=Sv5iEK-IEzw

Use the force Amy

Amy’s management has gone from strength to strength and one thing which made me realise this was when my friend Mike (@everydayupsdwns) and I were having a meal in March ahead of our presentations the next day. Mike counted the carbs in his meal and asked me how much I would have guessed.
“I have no clue”.
I didn’t. Amy’s done her own carb counting for ages now, so much so that I’ve forgotten everything. The realisation dawned on me that this is something I can no longer help Amy with, it wasn’t a great feeling.

Darth Vadar rendered speechless

In the last two appointments the Sith Lord has been rendered speechless when confronted with the blueprints used by the Rebel Forces and the Princess to undermine the Empire’s power. The blueprints, also known as Nightscout Reports, prove that the Princess’s knowledge is great and she has harnessed the force to become a Glucose Jedi, using science but ultimately becoming a master of the Art.
NOTE: I feel bad with the whole Darth Vadar reference thing: Amy’s consultant is lovely and has always focussed on Amy’s wellbeing rather than NICE target A1c’s, she’s always spoken to Amy rather than us – that’s great – and has always been there to answer any questions Amy has. Vadar(!) has also said she’ll continue to help Amy in her journey to her chosen career path in the medical profession.

The draw of Tatooine

Amy informed me this year that as soon as she’s 18 she intends to visit Tatooine in her bid to become a Rogue One šŸ˜‰
Maybe Yoda’s greatest student was talking about Amy when he once said…’feisty one you are‘.

A New Hope from The Little Shop of Watto

(Okay, I’m mixing stuff up, but Amy had a few parts in the school’s 2016 production of Little Shop of Horrors).
Watto owns a junk shop, a shop containing lots of parts people no longer find useful in their quest for glucose graphs the shape of a light sabre. We’ve known Watto for a long time and call him by his nickname, ‘eBay’.
img_20161229_082613071Our collection of components has grown and grown and now contains three insulin pumps, two Intel Edisons, two Explorer boards, two batteries, and an array of other bits.
Maybe soon I’ll start looking into the plans of the Diabetes world’s own Princess Leia (@danamlewis) and Luke Skywalker (@scottleibrand); those plans are called OpenAPS.
I’ve been looking into this for a long time now, Amy wasn’t ready but now it appears she’s interested. Whether I’ll have the ability to make this work and when I’ll get the time are another thing altogether.
Hopefully these components will be the winning combination to use in conjunction with xDrip to create a DIY Artificial Pancreas.
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I wonder if by the next Diaversary we’ll hear this?
httpv://www.youtube.com/watch?v=AXwGVXD7qEQ

World Diabetes Day 2016 and Blogaversary 4

londontoparisSo maybe this blogging was a fad after all, I’ve hardly kept it up-to-date, happy instead to read the blogs of some of the community’s new bloggers, like Amber.

Real life is more important right now

In fact it’s not just the blog which has taken a back seat to real life, Diabetes has too, well at least it has for Amy.

Aim for the sky Amy, diabetes won’t stop you

Life for Amy has just been so busy at the moment, with school, with friends, with gigs, with hobbies.
She’s decided to aim for the sky as far as education goes, striving to get herself into a position to apply to undertake a medical degree at one the UK’s most prestigous universities. At this stage whether she gets there or not is neither here nor there but one thing’s for sure: she has not considered that having Type 1 will stop her in her quest.
With the attitude to life and diabetes she has I have absolute faith she will achieve major successes in life.

Technology takes a back seat…

November 2015 saw Amy going to strength to strength with Nightscout and her Pebble watching displaying her glucose levels.
Then her Pebble broke and I never got round to fixing it.
Then eventually she decided that she wanted a break from CGM when her Dexcom G4 transmitter battery died.
From a parental point of view and especially as a member of the Nightscout UK team I’ve found it a little difficult to come to terms with a lack of CGM data, after a couple of years relying on it.
BUT, this is Amy’s diabetes, this is her choice and regardless of what I’d prefer I must respect her decision.
For the moment she’s wearing the occasional Libre and this is generally working very well for her, giving her poor fingers a rest from jabbing with a lancet. Libre is enabling her to see her data and we’re taking such a back seat that I have not looked at any of her data, whatsoever.
We’re so lucky that Amy is on top of her diabetes and things are going well, if she wasn’t and things weren’t maybe we wouldn’t be so relaxed, but for the time being technology is not the answer.

But Thank God for technology

One year ago today we were waking up to the morning after the terroist attacks in Paris.
I’d taken Jane to Paris for her birthday celebrations, it was the first time we’d ever left the kids (aged almost 18 and 15) alone, so it’s darn typical we’d go on that weekend to that city.
But Thank God for Nightscout, which enabled us to take that well needed break, knowing that we could see how Amy was and if needed get help to her, or nudge her sister into helping, or so on.
Without Nightscout, we’d never gone away that weekend.
Without Nightscout, Jane and I would never had the fantastic time we had.

A year of presentations

For me, this last twelve months have been somewhat challenging, but has brought forward some fantastic opportunities and experiences. I’ve always hated public speaking, in fact I won’t even speak up in a pub or a group, preferring instead to listen to everyone else, so the idea of doing presentations used to freak me out.
After the presentations at CWD FFL 2015 I’ve launched into seeking opportunities to present Nightscout to other families and health care professionals, all for awareness only.
First it was the opportunity to visit the Houses of Parliament with INPUT Diabetes for the Medical Technology Awareness meeting.
Back in January, along with Stuart, Kate and Amy, we presented two long (1.5hours) presentations to JDRF and Diabetes UK, giving them a run through of everything Nightscout.
A few days later I got the great opportunity to present about our life with T1 at Dr Partha Kar’s TalkT1 event, and of course slipped in a fair few slides about Nightscout, try stopping me.
Then in April Dr May Ng asked me to present at the CYP North-west education day, talking about our life with Diabetes and of course Nightscout and OpenAPS got some slides too.
Again in April I presented Nightscout to the National Diabetes Psychologists meeting.
This year of presentations culminated with my biggest opportunity yet: presenting Nightscout to NHS England. Again this was done purely for their awareness, our Nightscout team of presenters (me, Kate, Matt) expected nothing but we got so much more – blimey, just realised I never blogged about this…must do that soon.

And some fundraising too

I was amazed that my ‘let’s get a team of Diabetes Dads cycle London Nightrider‘ post on our Facebook group resulted in a team of around 30, raising close to Ā£20,000 for JDRF. I enjoyed all the organising of this and giving us Diabetes Dads the chance to meet up.
I’m also pleased to have helped my friend Kelly organise of group of 16 of us to cycle from London to Paris. Between them they raised thousands for several local Diabetes charities, enabling the purchase of CGM to help others in need.

A few other things I’m proud of

Getting Carlo to link his Libre-scanning Glimp app to Nightscout.
In April as part of promoting Diabetes UK’s 100 Things book, Jane, Amy and I appeared on a local TV channel. It’ll be the one and only time I let my eyebrows get a media outing. I was really proud of Jane and Amy, they did brillantly.
JDRF’s Type1Catalyst event saw both me and Amy in Parliament, unfortunately though for Amy several hours walking around Camden meant she spent most of the time in Parliament trying to get out of a hypo.
I’m proud to be one of the founding members of the new T1 Resources web site. Sophie and Mike really have done a great job of organising such a great resource.
Most recently I’ve enjoyed being a judge for the QIC Diabetes Awards.

QiC Diabetes Awards 2016: being a Judge

QiC Diabetes logo“No thanks, it’s not really my sort of thing” I said on the phone a few times to Emma, “but if no-one steps forward I’ll do it”.
Emma was organising the Judges for 2016’s Quality in Care (QiC) Diabetes Awards and was seeking to get a non health care professional (HCP) person on each of the three award judging teams.
No-one else stepped forward.
“Damn it” I thought, never wanting to backtrack on a promise.

QiC Diabetes Awards: a bit of background

The QiC Diabetes Awards is a programme designed to award some of the very best projects, initiatives, people and groups within the UK Diabetes arena. 2016 sees it celebrate its sixth year.
This year they were 11 categories, 8 of which were for projects and 3 were for people. See the list here.
Many of the winners and finalists from previous years are featured on the QiC Case Studies page for others to view and learn from, maybe taking on the initiative/project or adapting it to suit their organisation.

What the judges do

This year the judges were responsible for just 7 of the project categories and these are split across three judging teams.
Bob Swindell, Andy Broomhead and I were the non-HCP people and we each took our place on the teams which were chaired by Simon O’Neill (Diabetes UK), Dr Paru King (Derby Hospitals) and Dr Sheridan Waldron (Children and Young People’s National Diabetes Network) respectively.
Each team had to decide on the winners, finalists and commendations for each category.
My team had two categories to review – of course I’m not going to let on which ones.
After all the applications are finalised they are sent by email to each judge who then reads (and re-reads in my case) each application scoring each section against a defined set of criteria. We received them on 14th June 2016.
You have about a month to do this before the results grids are sent back to the organiser, who collates everything ahead of Judging Day. We had to send ours back by 11th July 2016.
After Judging Day you sit back, relax, and look forward to attending the QiC Diabetes Awards evening which you automatically get an invite to.

Paperwork, paperwork

I was sent an email with all the applications for my team’s two categories, 25 applications.
“Well, this won’t take long” I thought, incorrectly.
25 applications, most of which had 10 sides of A4. I don’t think I was prepared for the amount of paperwork I had to read through, and as someone who doesn’t really read it was all a bit of a shock to the system.

It’s 2016, why did I agree to be a judge this year?

If I’d really thought this through I never would have agreed to be a judge this year, another year maybe, but not this year.
June 2016 saw a month long feast of football in the EUFA Euro 2016 finals.
Early July saw the Tour de France start.
It turns out for me these were both far more compelling than judging applications for an awards programme.

Don’t judge my judging process

I guess everyone’s judging process is different, I’ve never done it before but my process worked for me and I’d improve it if I were ever to judge anything again.
On average I took at least one hour per application and judging it on its merits against the framework proved not much of a problem, but after doing that I needed to make sure it was fairly judged against the others. On the two days where I locked myself away for 6 or 7 hours this was much easier, but with football and cycling to watch this wasn’t so easy.
I made notes about every mark I gave for every section for every application as I was worried about being questionned on Judging Day. Turns out I needn’t have worried so much but making notes helped me through the process.
Finally I’d done them all and emailed Emma my completed results grid, merely seconds before the deadline time. Which was pretty much like my whole life at school.

Judging Day beckons

I was very nervously excited to go to Judging Day, at Chandos House in central London.
As a non-HCP and clearly the least educated person in the room I felt nervous about stating my views, holding my ground, challenging others and being a valuable member of the team.
But this would be the first time I’d ever met Becky or Anne in person, after years of chatting on Social Media, and I was really excited about that. Plus I was looking forward to saying hi to a few people I’d met before: Simon, Andy, Kate, Phil, Mayank and Bob.
The judging day itself was good, fairly low key with great open discussions.
The wine, cider and meal out afterwards with Anne and Bob was even better, even if I did later that evening fall victim to Bob’s mission of upping his step count for his One Million Steps Challenge for Diabetes UK.

Making a difference

My worries about making a difference as a non-HCP were unfounded. My views were encouraged, listened to and respected and I left feeling I’d made a real difference, raising awareness about some things, highlighting inconsistencies the HCPs hadn’t noticed.
I was initially worried about being seen as a representive of others in the community – I’ve seen some pretty negative comments to this effect about others – but I soon realised that I’d been invited myself, not as a ‘patient rep’. Otherwise I’d have refused to join in.

Would I do it again?

Yes, I would, without a doubt.
Along with the caveat of not doing it in a year which features a major football tournament.

DISCLOSURE
No-one had any input into the writing of this article other than me.
I received compensation for my time spent being a QiC Judge, for the hours spent doing the reading, taking the day off for the Judging Day, and travel was also paid for. On the plus side I’ll be using this exclusively for Amy and her diabetes stuff.
I also got a free lunch and Lord knows I love a free lunch, it was a damn fine meal and the company I had was pretty good too.
I also got a no-expenses-paid invite to the QiC awards on 13th October where there’ll be cake and I intend to up my ‘wages’ by consuming vast quantities of it.

T1Resources – hopefully a good place to start

That brief comment Partha made to Mike about discussing a new idea got me intrigued.
“If I can help, let me know” was my reply as we left the TalkT1 event in January.
A few weeks later that idea was discussed between a few of us and so started the project which became T1Resources: a new web site for Type 1 Diabetes information, where linked content would be reviewed by both a health care professional (HCP) and either a person with diabetes (PWD) or a parent of a child with Type 1, like me.
T1Resources.uk

A new idea?

There’s already so much information out there on the web but who knows what is valid, what is inline with clinical/medical advice, what isn’t, what’s just plain wacky and finally what’s that never-going-to-work-Type-1-cure-with-cinnamon.
T1Resources aims to address that issue by having links to useful information, with each link being reviewed by both one HCP and one PWD/parent.

A project with some backing

To work well and be effective this new site would need to get some decent (non-financial) backing, so Sophie – the project lead – started contacting many of the UK Diabetes industry charities and groups such as Diabetes UK, JDRF and INPUT.
So far it’s got the backing of two of the main charities and many of the groups frequented by the UK’s leading Consultants, Doctors and health care professionals. It’s early days so hopefully more will follow.

Reviewing the resources

Each HCP/PWD review is done separately from one another and it is then decided whether or not that resource is added. I’m not going to blog about the process as it’s constantly evolving at the moment.
In short if both HCP and PWD think the resource is valuable it will be added, if both say it’s rubbish it won’t be added. Anywhere in between and the editorial team will step in.
Of course, it’s not quite as simple as that.

Choosing the resources

Initially the team compiled a list of potentially usefull resources, several hundred were reviewed, many were rejected, the remaining were reviewed properly and one by one added to the site – something we’re still doing actually.
But that’s not the vision for T1Resources, the vision is that this resource is for PWDs/HCPs, by PWDs/HCPs, so there’s a page for suggesting a new resource to be reviewed/added. Not all suggestions will be added but each will be reviewed.

A few “thank you”s from me

To everyone involved in this project up to now and in the future, this couldn’t work without a lot of dedication. From the tiniest of ideas to hopefully a very useful web site, I look forward to seeing this site grow.
To Sophie for leading this project and tying it all together, this never could have happened without your input.
To Mike for all your tireless work. I doubt any of us really know just how many hours you’ve put into this, of the work you’ve given up to do ‘just another bit’, to the family events you’ve now doubt missed out on. I love design of T1Resources – apart from the bits I don’t šŸ˜‰ Hopefully you can put your feet up soon for a little rest.

DISCLOSURE
In my usual Pay It Forward stance all my time spent on this project has been free, same for everyone. Even Mike has paid for the site/hosting himself, although I sincerely hope he’ll be getting that money back soon.

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

Diabetes DadIn what seems like a millennium ago I submitted some travel tips to Diabetes UK for their upcoming book 100 things I wish Iā€™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.

Diaversary #5

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 šŸ™‚ 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.

An unsuitable hypo treatment

On Saturday night, after a fantastic day at the #GBDOC Conference we returned to the hotel with some snacks for the evening to accompany our hilarious game of Cards Against Humanity. Amy bolused for the carbs she was going to eat, putting on a combo bolus and all was set. Hours later we went to sleep in our cosy hotel room, with Amy sleeping two feet away from me in her bed.

Within 30 minutes I was woken to a beeping followed by a vibration noise, it was her Animas Vibe pump alarming us to a hypo. Everyone slept through. I checked DexDrip on my phone and could see she was stable, arrows going straight, unfortunately not upwards but fortunately not downwards.

I waited. Nothing changed, so I woke her up.
“Amy, you’re low, take 5 dextro tabs please and go back to sleep.”
I turned over and went back to sleep.

30 minutes passed and I’m awoken again, reach for the pump and set she’s low again, she went up a little after the hypo treatment but went back down again.*
I put on a temporary basal of 0% – effectively turning the pump off – and waited 30 minutes but nothing really changed as she still had some insulin on board.
I didn’t understand it though; those Dextro tabs should have brought her up to 7 or 8 mmol.

“Amy, wake up, you’re hypo again.”
“I don’t understand, I took some Dextro. Hold on, they tasted minty.”
“Minty?”
*confused faces*
I shined my phone’s light on the floor and there it was, along with the explanation why she was still hypo.

colgate

So there we have it, toothpaste is clearly not a suitable hypo treatment.
Who knew?!
šŸ™‚

* clearly something to do with waking up, becoming active then going to sleep again.

Diaversary #4 – meh!

smiley-face-meh_designWas it really four years ago that Jane took Amy to the Doctors to find out what was wrong? Four years since the Doctor took that simple blood test and called us within minutes to tell us to go to hospital? Four years since my daughter found her childhood all gone?

We all try to be quite positive about life with diabetes in general but not today, today sucks. Big time. Turns out I don’t quite feel as positive as I did last year.

Whilst I truly believe that Amy’s diagnosis has actually helped in certain ways (determination to succeed, family health) I’d give it all back in a heartbeat if it meant Amy never had to do another set change, or finger prick glucose test, or think about this condition ever again.

The year ends with Amy having her lowest HbA1c yet at 7.2% and with us knowing how we could get it lower if we chose to try a little more. There’s no doubt that we’ve done some great Diabetes related things this year and that mainly focuses around the other people/children with Type 1 Diabetes, or their parents, we’ve met this year. At the moment it’s hard to focus on that.

So forget all those fancy electronic devices, your bionic pancreases, your smart insulin; just figure out how to swap my pancreas with hers. That’ll do me, let me take this burden away from her.

I’d like to think that these words will be the last time I think about Diabetes today. But I know it won’t.