Us Type 1 Cyclists* Need Your Support

Imagine…
Your day started as early as 4am as you made your way to Olympic Park for the start of the Prudential Ride London 100.
Your nerves and adrenalin were sky high as you set off from Olympic Park amongst 25000 riders.
You’ve been riding for hours, mostly without a break.
You’ve conquered the biggest hills in Surrey – Leith particularly is a killer
You’ve already ridden 85 miles.
Your legs feel like they’re made of something-marginally-lighter-than-Lead.
You really need a boost to get you through the last 15 miles to the finish line on The Mall.

RL100JDRFAnd then it happens.

You turn the corner and there they are, the supporters from Diabetes UK and JDRF, they’re there just for you**
Twice I’ve done RideLondon and both times I’ve received such a boost from the supporters. And isn’t it nice that Diabetes UK and JDRF all stand together, united in cheering their riders on, united in finding a cure.

Of course Kingston isn’t the only place. I really got a great boost from being cheered on by one of JDRF’s Directors whilst nearing the top of Newlands Corner. Kingston though has one great advantage as you can see the riders on the way out to Surrey in the morning and on the way back.
In 2015 JDRF’s Beki encouraged me to carry on cycling.

And here’s the time I tried to high-five Phillipa in 2015 – that probably wasn’t my best move, I was lucky not to hit the railings.

So, I wonder if I could ask a favour: if you’re near London on the 30th July could you go and support all those cyclists doing the Prudential Ride London 100 for either JDRF, Diabetes UK or DRWF (Diabetes Research & Wellness Foundation).
The supporter point is here (near TK Maxx) and riders will be going through from 7:00 through 16:00 I guess – I got there by 10am.

I’m sure if you do go you’ll have a great day out too.

Here’s my video from my 2015 ride…if you’re really bored.

*I’m not a cyclist who has Type 1 themself, but I ride to get sponsorship to be put towards helping people with Type 1 Diabetes. And I’m not actually riding RideLondon this year either 😀
** Okay, maybe they’re there for others too but at that time it feels like they’re only here for you.

Type 1 and the NCS residential

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.

Diabetes Dads do Nightrider (again)

CaptureOnce again some of my Diabetes Dad friends and I rode in the London Nightrider, as we did last year when we had a huge group. Whilst the group wasn’t so large this year a good few thousand pounds was raised by the other Dads. I didn’t raise any money this year as I had a free place after coming to agreement with the event organisers who in turn used lots of my previous year’s video as promotional footage.

Yet again we had a great meet up and curry at Lahore Kebab House long before the ride and we’re really pleased that not only did JDRF challenge event organiser Bronagh come along but JDRF’s CX Karen too. It felt great to be supported and their support spurred us on for the ride.

What interested me this year was that two-thirds of us were using Nightscout and we had a bit of fun reporting on our kids’ glucose readings throughout our ride.

We had lots of fun.
Take a look.

(Here’s last year’s video)

JDRFDadsLogo

The Nightscout and GCSE Game Plan

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.

#TADTalk2017, Nightscout and that blooming Diathlete

tadlogoEither you wish the world would swallow you up or you laugh it off, as you should.
Yep, that moment had happened again where Gav (@Diathlete) talks about running from John O’Groats to Land’s End, shows the photo of the support group including me, and then tells everyone he can run faster than I can cycle. It’s true.
Of course I don’t mind at all, cos Gav saved me: if he had not run 900 miles and needed a little support which I then gave for 4 days, then I would never have cycled 100 miles in 2013. Which led to finding something I love to do, cycling 2000 miles each year since, completing 100 miles/day rides, cycling to Paris twice. Thanks Gav, that’s down to you.

Yawn, yawn, yep, yep, rabbit, rabbit

The day had started early when at 6-something-or-other a.m. I picked up Kelly (@diabeticqueen1) who was my travel companion for the day. Like Chas & Dave’s famous song – Rabbit – she didn’t shut up the whole way, she was clearly as excited as half of my Twitter timeline was to be attending #TADTalk2017.
I didn’t mind at all, we had a lot to talk about what with various presentation collaborations, our Sugarbuddies peer support and our cycle together to Paris. I was keen to introduce her to lots of people I already knew and it made me smile when all I heard all day was ‘I love her/him’ as each speaker took their turn. Positivity is certainly the way forward.

A set of family speeches

Although we’d not met in real life before when Jen took to the stage it felt like I was watching a friend or member of my family up there on that stage, someone whose story I knew a fair bit but whose full story was unknown to me, a story which made me feel a little sad, a story which showed grit and a great outlook on life. The same happened when Gav floored us with his achievments, Roddy amazed us with his expeditions, Mel’s sporting achievements and finally Adrian with his story of never really speaking about Diabetes – he’s really turned that corner now.
Everyone so humble, so grounded, so unaware of just how bloody brilliant they are.
And they really are.
Loads of others have blogged about the speeches so take a look at their blogs: here, here, here, here, here.)

Three things which I thought were awesome

Let’s face it, the whole event was freaking awesome – hopefully Catherine, Peter and Partha know how grateful to them I am – and we are – for the event – but they were some stand-outs for me.

Three things which I thought were awesome – approachable people

Some of the people who attended not only went but made themselves approachable to the masses, and I’ll highlight Karen Addington, Chief Executive of JDRF UK. Let’s not forget that Karen herself lives with Type 1 Diabetes but it was great to see her there, and get the chance to have a good chat. I’ve noticed this before at Diabetes events, that CEOs and Directors of the charities attend and make themselves approachable. I’ll always remember being cheered on cycling up Newlands Corner hill on RideLondon 2015, only to find out later it was one of JDRF’s Directors.
At TAD we could freely have a chat with not only Partha and Catherine, but Bruce Keogh, Jane Cummings and Stephen Dixon too.

Three things which I thought were awesome – free beer

Diabetes UK’s drinks event after TAD had finished was absolutely brilliant and I want to thank them for doing that, they didn’t need to, but it really extended a great thing of the day…being able to talk to each other.
It gave us all another four hours or so or chat with our friends, some old, some new.
Thanks to Michaela and Sally for organising this and for the D:UK leads for allowing it to happen.

Three things which I thought were awesome – helping people with Nightscout/WeAreNotWaiting

I’d asked Partha and Catherine if Nightscout could have a stand at TAD, as we did the year before when we were supporting Wes, Nightscout USA’s busiest advocate.
Without hesitation they agreed.
Normally HCPs would say no, well let’s face it they can’t officially support something which doesn’t have the backing of clinical trials, and by some is seen as hacking.
I understand and expect the ‘no’s’ but it was lovely to have a ‘yes’ and I’m pretty confident I know why they agreed: ultimately they know Nightscout/OpenAPS/LOOP make a lot of difference to their patients and they want the best for their patients.
Us Nightscouters had travelled far and wide primarily just to be at the stand, yes we wanted to hear the talks but above all us we went to help people.
Rather than just Nightscout we opted for a #WeAreNotWaiting table and were delighted for Alasdair to join us with his OpenAPS and LOOP kit.
We had 5 Nightscouters and 2 Loopers present and each of us ended up speaking to a good few people, some learned about Nightscout for the first time, some had their nerves about setting it up quashed, many decided to set it all up soon.
For more info about Nightscout, either visit nightscout.info or join the Facebook groups: Nightscout UK; CGM in the Cloud; Nightscout for Medtronic.
For more info about creating a DIY artificial pancreas either visit openaps.org or join the Facebook group Looped.
For more info on getting your Dexcom G4 data available on a watch or website take a look at this page.

Best first transition clinic ever?

transition

On Tuesday Amy had her first transition clinic, it was everything thing it should have been and a vast difference from the first one forced upon her in January 2016.
She was in control of when transition started and who would be there at clinic.
Perfect.

Previously: Worst transition clinic ever?

In January 2016 after just turning 15 Amy’s first attempted transition clinic was an absolute disaster, especially as she had been told in the previous November what would happen and said that she didn’t want to go in by herself.
In reality Amy probably was ready to prepare for transition and the clinic team knew that, so I’m absolutely sure they thought they were doing the right thing, but they didn’t listen to Amy, or forgot, both of which were totally wrong.
Her wishes: I’m not ready to transition yet.
Our view of what clinic thought: We’ll do what we want, when we want, we’re in control.
After a family discussion Jane emailed the team and from that day on we never heard about transition

A broken relationship with clinic?

We didn’t let our anger from January 2016 last for very long, we emailed them, they responded very well, we moved on.
We knew that our team woke up every day with a desire to do a good job, they are lovely personable people with a knowledge far exceeding the little bits we understand about this condition and if we ever needed support they would be there.
But this one action almost saw us move clinics to another team, it felt that bad, one more wrong move and we’d be gone, to the bright lights of London’s UCLH or staying local with Southampton UHS.

“Are you ready to take the next step?”

When transition was mentioned back in December Amy agreed the time was right, but it brought a huge moment of sadness from both Amy and her consultant who’s been with her since diagnosis, and the ward flooded with tears. But I knew the new consultant a little and knew he’s just as lovely as the first, it made things a little easier.

The appointment

With nerves aplenty Amy and I entered the new centre, all gleeming white, with its touchscreen login screens, it already felt we’d moved from a provincial hospital to a bright-lights-city one.
We moved to the new waiting area and saw a few other other teenagers and young people. There was food available – but no blooming nutrition info! – but was it for us, or not? It was.
I chatted with one of teenagers ‘M’ who was using a Dario meter on her iPhone, I’d not seen one before.
This was already so much more relaxing that we thought, Amy was definitely relaxed and seeing the face of her most recent DSN certainly helped that.

Helping the Young People ask for help: a great idea

‘M’ picked up a piece of laminated A4 which had two dozen words/phrases on it with an area to put a tick or a dot. She explained that all you need to do is put a mark by anything you’d like to discuss.
Amy picked it up and we joked about ticking all the rebel ones: ‘alcohol’, ‘sex’, ‘recreational drugs’, ‘tattoos and piercings’, but in the end opted for ‘driving’, ‘alcohol’ and ‘insulin pumps’.
I could see how brilliant this idea was. How many people, adults let alone young people, would just freeze under embarrassment when required to speak those words? But to tick stuff before you speak to anyone, and then just hand the sheet in, yes, I can see that’s far easier.

Back with the old DSN

They’d explained that the whole team wouldn’t be changing at transition clinic and Amy’s DSN would remain the same, that’s a good thing, she’s lovely.
HbA1c was done, questions asked, Diasend graphs gone over and lots of questions about delaying the switch to a new insulin pump for Amy. Hers is 4 years old in June but it’s not a good time, what with GCSEs from May to end of June, NCS starting afterwards until a couple of days before we go backpacking around India for a month (again 🙂 ).

The new consultant

I’ve spoken with Dr P a few times, he’s great, I like his attitude and his way with people.
I’d dared Amy to greet him in his native German tongue with something like ‘Hi, my Dad doesn’t understand German and he’s an idiot’ but she bottled it.
From the word go Dr P addressed Amy and told her a few things which are very important (I’m paraphrasing here):

  • this is your clinic
  • you have the right to come in with or without your parents, it’s up to you.
  • your parents have the right to come in without you should they wish.
  • we’re here to help you transition to adult care, to become educated enough to move on without fear or worry
  • we’re here to prepare you to be okay about coming to clinic by yourself, just in case you go to university, or just want to come by yourself.

This was all exactly what we wanted to hear.

A long time later

We’d arrived at clinic at 5pm, it was now gone 6:30pm and we’d spent at most ten minutes waiting.
Amy had chatted with ‘M’ who was interested in Amy’s views about insulin pumps, it got Amy waxing lyrical about its benefits to her: ‘it’s changed my life’, ‘I’d never go back to MDI’, etc..
We’d seen the DSN, the Consultant and spent a long time with the new Dietician.
Amy was relaxed, as was I.

We arranged the next appointment and left in silence until Amy broke it with “that was really good”.
Best first transition clinic ever?
Yes, probably.

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.

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 😉
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.
img_20161229_082633953

I wonder if by the next Diaversary we’ll hear this?

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 £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.

Type1 Double Dose, a Diabetes Mum’s story, by Lucy Veal-Johnson – Part 3

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 or part 2, Night-crawler to Nightscouter?
Here’s part three of a three part story.

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Paige and me enjoying a coffee soon after diagnosis

A BIG THANK YOU

When Sienna first got diagnosed all our family and friends grouped together and helped us gain our new normal, living life just a bit differently. Friends arranging their working lives, arranging their own children’s bedrooms to accommodate our three children, to arrange the washing of their school clothes for the next day at school all whilst Sienna’s close family gathered around and had their own training on T1.

Our friends joked saying it was like a play group with all the children playing together, but that they were all well behaved. I think our heads were obviously not in the right place to remember to thank everyone for their own efforts. We really do have some amazing and very loving friends, they really have stood by our sides through the worst and have shared some awesome highs. So to all the people that have stood by, watched over us, helped out in anyway and have taken the time to learn and ask about T1 we really are truly thankful to them.
Eighteen months on and now with Nightscout and Dexcom in tow we have taken our normal and smashed it. We have found caring for Sienna less stressful, don’t get me wrong for us we still work hard on her D everyday it’s just a little bit easier and her HbA1c is now at a health 7.5.

A big sister’s knowledge

It’s a Friday night sleep over for Paige with a friend having sweets, treats and films. I had the girls in one room with mattresses on the floor and as we do every night we go up and check Sienna’s levels.
Paige’s friend is a lovely sweet girl with a heart of gold was very inquisitive that evening asking if Sienna’s finger clicker hurt her and would it hurt her. With that I wound the needle around and down then offered it to her “you can try it if you want” she shied away and said she couldn’t do it, with that Paige nicked it off her and said “here I’ll show you how to do it”.
This girl from day one has amazed me with her knowledge of T1 and taken a keen interest in caring for Sienna as a big sister. She knew how to click her sisters finger and get the reading as well as carb count and enter the carbs in her meter. She knew the diabetes book like the back of her hand and got involved in doing a 2 minute discussion at school talking about and spreading the word on type 1 for a competition. Such a chatterbox I think she said she talked for six minutes, I giggled when she told me. Massive well done.

(Off track slightly but who’s not going to big up their child at any given minute especially at a time like this.)

That sinking feeling

Paige clicked her finger and read out that her bloods were 31.6mmol.
31.6mmol!
31point6She shocked herself so I went on to say that because she had been eating sweets that she must go was her hands. Right at that moment my heart sank slightly and every part of me right there so desperately wanted the next reading to be a hell of a lot lower. Some part of me was trying to justify such a high reading, maybe she had way too much to eat.
I asked them what they had had.
They had shared one small packet of jellies and half packet of toffee popcorn so there was no way in hell it should have been that high. I love candy floss and have eaten a whole packet (Obviously, I’m not sharing that, so I’m going to eat the whole bag) and could probably eat a lot more and still my sugars wouldn’t be that high after.
She came back after washing her hand and said to her friend that sugar on her hands would give a false reading. My heart melting again because she has just retained so much information but I knew deep down that our journey would start again only this time Paige had a very unwanted friend onboard.

Heart in my mouth

Again she clicked and with my heart in my mouth I prayed and hoped to God.
Please, please don’t let it be higher I said to myself. The meter beeped and read HI.
My heart skipped numerous beats and inside I sank.
We all remember the first time we went through a diagnosis! Yep, that feeling. Paige’s face dropped but she looked to me and basically wanted reassurance that maybe she didn’t wash her hands properly. “Yes definitely and No I’m not worried” I said. Going to see her dad I explained the situation. He said exactly what had whizzed in and out of my mind in seconds before and that was maybe she had eaten too much too quick. The realisation of that statement meant that he was trying to justify to the reason why, Love this man to bits but this time I was not a paranoid mum. I quickly got online and told my T1 family about the situation and asked for guidance.
Thank you for all the replies back offering help. Within seconds twenty or so responses came back saying to go with her and wash her hands and to click a toe and reassured me that I should take her straight to hospital, to check ketones and to give plenty to drink etc.
Paige had been weeing a lot that evening not that I noticed as she’s old enough to take herself to the loo as well coming down for more drinks.

In total disbelief

It was only when I sat in total disbelief on the sofa that all the pieces started fitting together. I decided to go with her and wash both her and my hands. We clicked again, this was now the 3rd click and the meter beeped again to read a HI for the second time. I did ketones to see how poorly she was but they were 0.1.
I knew then that if we went to hospital she would be seeing the diabetes team that day without fail but how could I actually turn around to her and say “Yes you have type 1 diabetes” but at the same time I didn’t want to lie to her. When Sienna was diagnosed she was very poorly but this diagnosis was at the opposite end of the scale and Paige was a lot older. Her friend came downstairs whilst I rang the NHS to get more advice and even the nurse said as she’s only just finished eating that her sugars would be high. Sorry but this was rubbish I thought to myself.
One more test and hour later and she was still HI, I explained that we would be going to hospital and that she would have to have a test to see how poorly she was but at the same time not saying that she definitely had D. We left daddy snoring in bed and woke my 11 year old son up to keep said friend company, they had been friends since pre-school so she wouldn’t feel left out so to speak.

15051995_10154718424276913_1653195420_oSienna supports her sister in hospital

A journey forgotten

We gathered our things and drove off to the hospital and I’m really sorry but I can not remember our conversations on her possibly having T1.
On arrival to the hospital it did take forever for her to be seen but once she was she had to have another clicker. Now for some people like us with young one’s you do think of their poor fingers and how sore they get after 3,360 or so clickers and the broken skin. A very emotional downfall to T1D as well as the cannula insertions on delicate skin and the amount of time we have to hurt our children to insert a needle. The constant numbers running around our heads, we now had double the work to do, double the dose of insulin to deal with as Paige is older her insulin doses were a lot higher, Double the pain of watching them go through this and not being able to take it away from them, treating both Hi’s and Lo’s throughout day and night was doubled a mammoth task that we now faced. But we DID IT and we will continue to do it for as long as it takes because we have to.
I have always said and will continue to say that as parent of T1D we all take an emotional battering everyday but put it all to the back of our heads and it only comes to the surface when talking or writing about this condition.

A journey shared

We shared Paige’s journey throughout her stay at hospital with our T1 family and we gained a few more friends along the way, we had been promoted to the families with two T1’s. Paige made the doctors and nurses jaw drop with how much she knew and how brave she had been doing her 1st injection and now that we have settled into some sort of normality she is still brave as all T1’s are. Watching Sienna in hospital being so supportive, so loving and empathetic to Paige was admirable for all to see. Sienna was offering Paige her hand to hold whilst she watched her do her injection and stroking her knee telling her how brave she was. All these things she remembered Paige did and still does with her.
They will forever and always have T1D to deal with but nothing can smash the bond of being a sister and we will not let anything stand in their way.

So to all you Supermums, Dads, Grandma’s, Aunties, Uncles, Brothers and Sisters you can do it, as a friend once told me you are braver than you were yesterday, stronger than you think and smarter than you seem.
Xx

 

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

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.

From Night-crawler to Day-walker, a Diabetes Mum’s story, by Lucy Veal-Johnson – Part 1

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.
Here’s part one of a three part story.

sienna-for-blogLet me set a scene.
The date was 22nd April 2015, sat outside in the garden with some friends and my mum having a nice sunny chat over a few cups of coffee. Sienna was our youngest of four children at 2 years old she was tottering about tripping over her own two feet like a drunk 2 year old whilst playing with her toys. She had been under the weather for a couple of weeks and had noticed a change in her but couldn’t yet put our fingers on what was laying beneath. In my gut I knew she wasn’t right but was waiting for something more poinient to come through so I could say “yep, that’s it, that’s what it is” But nothing as frustrating as it was I was a mum of four, so yes experienced in the art of motherhood. The tripping over stood out as well as going off her food only wanting biscuits and drink, coupled with a bad bout of thrush. She had suffered with this on and off since birth but this one was taking an age to go. The next day day she went with her child-minder whilst her father and I went to work. I had mentioned to her that our little one wasn’t right but couldn’t put my finger on anything but if she needed me to get her I would. We didn’t hear anything all day until I picked her up on the school run. She went on to say that Sienna only had a couple biscuits and drank like a horse but most definitely wasn’t right and agreed with me that she could also not put a finger on it. She also had experience in the art of motherhood as well as achieving the minding of children certificate. With that I made the decision to ring the doctors and get her booked in for an emergency appointment that eve, explaining that she wasn’t right at all but really needed to be seen.

Trusting my instincts

My instincts were right.
As I exited the school gates she started going blue, I had already phoned a friend to help look after our other three whilst I took her to the doctors appointment. After I had told our doctor what was going on he went to ask for advice from the nurse but had first asked me if he could get her to perform a blood glucose test. Desperate for anything to help our little girl I replied with a yes of course.
Test 1 = HI on the testing meter but I had no clue what that meant so the nurse asked if she could do it again just to make sure but this time explained what it was for and why she was testing again. It slowly sank in. She was testing Sienna for Type 1 diabetes.
Test 2 = HI but this time the nurse turned around and talked to the doctor first before turning to me and said that our little Sienna was type 1 diabetic and the testing meter only goes to 32 before it cannot read sugars higher than that. The nurse exclaimed that Sienna needed to go to hospital to find out how ill she was and that she would be on injections but also that within 12 hours she would be feeling slightly better. The doctor in the mean time had called an ambulance and had come back to tell me that I should let her dad know what was going on. The next half hour was a bit of a blur with me texting close family to tell them in short hand text that Sienna was being rushed to A&E because of T1D. I felt like I was in a whirlwind, as the ride to hospital neared everything all jumbled into one.

Hospital arrival

Upon arriving at the hospital she had two drips in each of her hands and numerous blood vials were being taken. I had to literally pin our struggling, kicking and fighting 2 year to me with all my might. Dad arrived along with a close friend of the family,I was relieved but very shaken. Pinning her down really got to me. The consultant came in once Sienna was more settled and fully explained what T1 was and how it would affect her, how the hospital would help and who was going to get involved in helping her recover. For me, the next three days were a blur, all I knew and understood was that our other children were with our friend and that my little girl was hurting inside and I couldn’t make it better for her. Any mum would feel the same, no-one likes seeing their children in pain and just sitting there doing nothing, I felt hopeless.
Part of being Hyperglycaemic is that she loses all sense of normality, she becomes angry which is understandable, they say it’s like having a hangover with the headaches, feeling and being sick, wobbly like she was almost stagger like. And for a 2 year old to feel like that hit both her dad and I like a ton of bricks. She didn’t want me, no cuddles, no hugs, no soothing, NOTHING. The more I tried the angrier she was. This was totally a shock to us as she was always a sweet caring little dink (her nickname being the smallest and the baby of our family). Paediatricians, Diabetic nurses and dietitians, psychologists and consultants all came to give us individual talks on how they would each be helping Sienna and us come to terms with this life-changing condition.

sienna-for-blog-2
Even blood glucose strips need some love

Filling up with information

The injection training started on the third day when Sienna was well enough and coherent enough to tolerate being injected.
Both her father and I had to perform finger pricks every 2 hours, give 5 injections to Sienna and be confident in carb counting before being allowed to take her home. The team were fantastic in working with us for us to be able to take care of her at home. Our minds were stacked full of information, Yes with diabetes there is a lot to take in and a lot that can affect her levels.
Friends asked me later on how do I hold all that info? I said that I feel like we have completed a five year degree course in type 1 diabetes in 5 days and it just comes, there’s a little life at the end of it so you cant forget.

Feeling overwhelmed

Being told to give injections that could potentially be life threatening either way if you get it wrong was an over whelming feeling too. Too much insulin and you overdose and her levels will drop too low taking her into Hypoglycaemia. As she developed T1 at a young age she has no Hypo awareness, this is also a worry. The feeling of this is likened to an emotional female at the worst time of the month with the crying and the hunger. Her little brain is being starved of the glucose it so desperately needs making the brain function inept. Too little insulin and her sugars swing the other way, they would rise way up to the sky (sky/ HI). I took two weeks off work where I was a full-time lifeguard pool manager working shifts and my partner was working as a technician I ended up working for another eight weeks before the 2 hourly night & day testing took it’s toll. I constantly saw numbers on everything and soon became a genius in knowing the carbs in a slice of bread or a fudge bar to a small banana. You see, diabetes doesn’t sleep or take a break which meant we couldn’t either. We couldn’t just say we don’t want you today please come again tomorrow, it’s here to stay. However much I wanted to say just DO one.

Nighttime Ninja

I soon became the master of the night, The illusive one, Yes I became “THE NIGHTTIME NINJA”. Testing blood sugar levels in near complete darkness, I have the eyes of a hawk and the stealthiness of; well some kinds of demented ballerina Have you ever tried dodging Lego in the dark, delicately tripping over dolls and teddies with only the light of the blood meter to light the way. Then to use the meter light to light up the finger pricker to prick your precious ones finger for the umpteenth time, to then use it to light up the smallest drop of blood ever like some kind of spy. Mission impossible was only complete if her sugars were in range. If not we gave our little one a Jelly baby, yes a sweet in the middle of the night, kind of goes against any normal thinking but this one little jelly baby can and has saved her life on many occasions, all hail the jelly baby. Our little one safe and definitely soundo when I left to go back to bed and rest until the next alarm goes off in 2 hours. This was a mean feat. I can be sleep deprived longer than I thought I could and still get up and do a normal day. I think they call it a mombie, but after six months I was very, um exceedingly, no wait extremely tired, exhausted, worried and scared.
I cried more tears than I have drunk hot water. I tried to buck up my ideas and tried to be brave but no matter how hard or how brave I felt I was so scared that our little one won’t wake up in the morning. Mornings for me are special when I see her stir or take a breath, (that’s also normal to feel like that, but it does get better, a lot better. Over time I got used to walking the floorboards at night. I was now a master in the art of Night Crawling, I had passed the Lego and doll tests, I knew which floorboards to miss, I new how to give a hypo treatment and correction injection without fully waking our little tot. Not once did I ever test the wrong child due to tiredness and survived to do it all again the next day or that day depending on which side of the clock you’re on I suppose.

I am not alone

I very quickly joined a Diabetes discussion forum on Facebook.
I was not alone.
The parents all gave their welcome speeches in their own way and I quickly realised how many little tots there were all over England, Scotland, Wales. I quickly learned that advice can be gained at any minute of the day, every hour of the day and night. I read other parents T1 Journeys with their little ones just like your reading mine now.
“I couldn’t inject” one friend said to me, another said “it could be worse”, “so she can’t have sweets now” every one of those questions really grated but one thing was for sure I had my FB T1 group to vent to. A HUGE group of parents of children with Type 1 diabetes, they ALL got it, they knew what I was thinking, what we were going through as a family, they knew the right words to say anytime of day or night. We like to share every little bit of happiness and excitement and achievements as well as go through the journey of Lows, the hospitalisations for some little ones. But the journey’s we’ve had we take together. I’ve never met any of them/you but because we all talk so much it’s like I have known them for an age.
For them/you this is my own personal thank you.
Thank you for being there through the good times and the bad.
Thank you for giving that extra little bit of advice at stupid o’clock in the morning as well as sharing our HIs and LOs 😉

At least night time testing provided some comedy moments
sienna-for-blog-3
 

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 😉 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.

Step-by-step Guide to Soldering an xDripKit

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.

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.

Nightrider 2016, the Diabetes Dads and the Videos

JDRFDadsLogoShortly after last year’s Nightrider there was a little conversation on our UK Diabetes Dads group. I suggested we should try and get a large Dads team together and immediately got two Yes’s from Nightrider stalwarts Dave and Andrew. Little by little more Dads joined ending up with 23 Diabetes Dads and some friends. In total there were 30 of us riding with 27 of those fundraising for JDRF.

A little motivation & from nothing to everything

Many of the Dads have personally thanked me for organising and motivating them to do Nightrider but the truth is I did very little, they wanted to do this and everyone motivated everyone else, with tales of training rides, pictures of bikes, etc..
A fair few of the Dads didn’t even have a bike and stories such as Vincent’s weren’t uncommon: Vincent last rode a bike on his paper round 25 years ago. Alistair’s story was similar. Others such as John signed up for the 60km ride but soon got persuaded that the 100km ride was achievable.

Lighting up the roads of London

After doing Nightrider in 2014 I knew our large team would get split up so I search for lights for our bikes and found these which I’ve gotta to say looked by far the best lights at Nightrider. It gave us the chance to display multiple images throughout the whole ride, include JDRFs logo, the JDRF/Dad logo I created (see top right) and others such as the Nightscout logo. In my opinion these were the best lights of any bike doing Nightrider.

Team motivation

makereadyyourbikeStrava and Facebook are great motivators, people put up their rides, you see it and feel guilty you haven’t ridden for x days, so you go out for a ride and post it on Strava/Facebook afterwards. And so on.
And on.
With so many of us in the team the rides got longer, the bravado better, the team closer and the jokes worse. Far worse [thanks Vincent 🙂 ]. But it was turning into a great team and forgetting Nightrider we all just wanted to meet up and chat and joke.

Nutter on a bike

My RideLondon 2015 cycling buddy from last year Paul Smart made a heroic decision that to prise hard earned cash away from his friends Nightrider would not be enough. No, 100km is far too easy (!) so Paul planned to ride to London from west of Birmingham, leaving on the Friday and cycling 100 miles to Aylesbury before finishing the other 50 miles on Saturday morning and then taking on the Nightrider that night.
Nutter.
But he did it, in fact he smashed it.
Legend.

25 Lamb Bhunas

ddadscurry
It seemed like a good idea at the time with Lahore Kebab House being a firm favourite of mine and Andrew’s: let’s all meet and have a curry before the ride.
Right now I can realise that a curry before cycling 100km isn’t such a good idea but in truth it went done a storm, especially Lahore’s legendary lamb chops which we ordered 6 plates of.

Nightrider dawns…or rather dusks

Nightrider2016Team groupshotThe curry, or rather the tube to/from had made us late for registration, it was bedlam, no-one knew where to queue up to get their ride numbers and hi-viz vests. Luckily Daniel’s wife Julie went into event organiser mode and sorted us out, thank goodness as we’d never have set off for ages otherwise.
As it was our supposed start time of 11:00pm had turned into 11:24pm.

And the ride?

Well, in short it was brilliant but I’ll let you watch these two videos to find out.
First it’s mine, turn your speakers on….

And second it’s the one shot by David Reid, featuring selfie-idiot me:

A lovely fundraising amount

Finally, the whole point of the ride was to raise money for JDRF and I think we did this pretty well.
My personal thanks goes out to Stuart, Matthew and Daniel for the sheer volume of sponsorship they got it. Amazing effort lads, well done.
DadsNightriderTotal