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Gav’s GBR30/30 Challenge – Running from John O’Groats to Land’s End

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Dr Iain Cranston gives a talkGav’s GBR30/30 Challenge poster

You know most of this already right?

There can’t be many people in the UK who use the internet and have some association with Type 1 Diabetes but haven’t heard about 21 year old Gavin Griffiths’s amazing challenge of running 900 miles between John O’Groats and Land’s End, over 30 days. If you haven’t heard about it then take a look at Gavin’s web site: http://diathlete.org/the-gbr-30-30-challenge/

Donation, donation, donation

If you’d like to donate to Gav’s GBR30/30 Challenge fundraising pot please click this: http://bit.ly/gbr3030donate

How did we get involved?

I’ve been following Gav’s progress and tweets about the challenge for many months but never thought I’d ever get involved but when the opportunity arose on the 27th December – two days before Amy’s second Di-aversary* – I signed up.

So there it was, we’d cycle next to Gavin for one of the days of his GBR30/30 challenge. It seemed to us like a token effort considering the challenge itself but Gav seemed pleased with the idea.
The next day we were at Amy’s clinic and even the Doctor knew about Gavin and his challenge:

*diaversary – the anniversary of a person being diagnosed with diabetes, turned around to be a positive thing.

Why get involved?

If you’ve read the article about trying to inspire Amy then you’ll have guessed correctly that this was part of the plan. I wanted Amy to meet Gav at least and to see/hear first hand that the life of someone with Type 1 Diabetes doesn’t need to be held back; that she could aspire to have a great life without be ‘stopped’ from doing stuff*; that someone with Type 1 can do stuff that people without it (like me) could never dream of doing. I figured that if this mindset sank in before going through the next tricky teenage years then Amy would be better placed to deal with adolescence.

* ok, I know there’s stuff she just won’t be able to do (join the army, drive for more than a couple of hours without stopping, eat without using an A-grader’s knowledge of GCSE’s mathmatics) but I’m talking in general; about not just sitting there and bemoaning her situation.

Logistics, logistics

I asked Amy if she’d liked to do the cycle and she jumped at the chance, even though the furthest she’d ever cycled was 24 miles the previous summer. I told Jane that I’d need her to provide driving support as we’d be starting in one place and ending somewhere else 30 miles away.
“But I’d like to do it too”
“Damn, I’d better ring my Dad and ask him to drive then”.
Logistics turned out to be the trickiest thing but I came out with a plan, saw it through and it all went well in the end.

Meeting Gav

I met with Gav one Sunday morning – he was late, I think it’s a trait of his 🙂 (Just joking Gav!)
We discussed the challenge, what troubles he was having and somewhere along the line I offered as much support as he needed, especially for the last four days, starting at Torquay and ending at Land’s End.

Soon it became clear to me that I wanted to do more than cycle just one day but the logistics of anything else seemed to difficult, until I threw a couple of ideas my Dad’s way.
Suddenly the agreed plan was hatched, Dad and I would support Gavin from Torquay to Plymouth and Plymouth to Bodmin; Jane, Amy and I would cycle from Bodmin to St Agnes; we’d all be there at the (Land’s) End to cheer him home.
I decided that I was going to cycle some part of all those four days but I kept it quiet, for a while at least.

JDRF Discovery Day (Verwood, Dorset) and Mini Tweetup

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JDRF logo

My second Discovery Day

Even before we “met” this Discovery Day and I have had a rocky relationship: “she” was the first one I booked but then I ditched her in favour of meeting friends at the Bristol JDRF Discovery Day in April. But she wouldn’t leave me alone, bombing my timelines with information about her, so I relented and booked up to see her with only a few hours to go until her big day.
This article about the Bristol JDRF Discovery Day explains what Discovery Days are about, or you can check out the official information on the JDRF web site.

Stuck for something to wear

I was hoping to meet a local tweep named Amy – let’s call her AmyTwo to avoid confusion with references to my daughter –  there,  and already knew that recognising a t-shirt is easier than recognising a face from an online avatar, so I put a joke out there on Twitter, mainly for AmyTwo to be able to recognise me.

GBR3030 shirts

I was proud to wear one of Gav’s GBR30/30 Challenge t-shirts having cycled 100 miles next to him and knew it would be easy to be recognised in one of them, it turned out to work very well.

Faces to names and all that

At the entrance JDRF’s Louise was there to sign people in. Of course I wasn’t on the list because I was such a late entrant but I said my name and her response was “Oh, hi Kev, I met your lovely wife last week at the JDRF Speakers Training day”. Jane’s signed up to be a speaker on behalf of JDRF, speaking to Rotary Clubs and the like, starting quite soon.
I went into the auditorium, AmyTwo wasn’t there and neither was anyone else I recognised.

Ooh, a new blood glucose meter which we haven’t got

It’s becoming a standard joke that whereever I go I pick up a new meter for my Amy: I got a ContourUSB from the last JDRF Discovery Day; on the GBR3030 I saw Gav’s Glucomen LX meter and ordered a free one of those.
Here I saw a lady demoing a meter by Mendor, one which I’d seen a video of a couple of weeks ago and thought it looked interesting, well boring looking actually but the concept was interesting.
Everything you need, pricker, strip, meter and case are contained in one unit. Here’s a couple of their videos:

 

The first talks start

First up was JDRF’s Nikki who opened the day, said a bit about the speakers and later as a bit of ‘cheesy fun’ (as she called it) got us to raise our right hand and state “I do solemnly swear, that I will never, just refer to type 1 diabetes, as “diabetes”, and I will always say “type 1 diabetes”‘. It raised a lot of laughs and actually was a very valid point. If we, the people associated with Type 1 Diabetes don’t always quality the type then what chance is there that others, like the press and media, will do the same?

Diabetes Awareness Dogs and Wessex Assisting Dogs

I saw a similar presentation to this in Bristol but for me this one was much better, probably because they actually had two well behaved dogs there. To be fair at Bristol I spent the duration of the presentation mucking around on twitter with the #DOC tweeps, jokingly asking Annie to get Jane a cup of tea and then having a cup being passed along the line – hilarious.
I was amazed to hear how the dogs are trained and just the sort of thing they can do, such as trying to alert their owner of a forthcoming hypo, bringing them hypo supplies and evening pressing alarm buttons should their owner not respond.

Superb presentation by Dr Tim Tree

Dr Tree works at Kings College as part of the D-GAP programme and alongside Cambridge and Bristol.
He’s a pretty smart cookie. But would he be too smart? Would I understand his presentation?
I had these worries as the two PhD holding speakers at Bristol presented very well indeed but it was just a little too technical for me, someone who never studied Biology or Chemistry at school whatsoever.
Dr Tree was brilliant though, aided by a very whizzy presentation which sadly for me was done using a Mac; still I’ll let him off this faux pas.
Dr Tim Tree presentsHe has type 1 diabetes himself, as have relatives of his, but not his siblings and he spoke about them, getting diagnosed and using multiple blood samples of theirs in his research to discover why he got it but they didn’t.
He took us back to 3500 years ago and explained how ancient Egyptians detected the presence of diabetes: they used ants and two samples or urine, one without diabetes and one suspected of having it, if the suspected patient had diabetes all the ants moved to his/her urine sample. Simple. Effective. Sadly it didn’t help as prior to 150 years all diabetics died as no medicine had been discovered.
He brought us forward to the last 5 years and told us all the recent breakthroughs being discovered and the part D-GAP (and Bristol, Cambridge and Kings) play in it.
The presentation was fun as he used pictures of his family and one of his sons who was in the audience helped out too. Much use was made of lego figures and in the end he said “there you are, 5 years of research summed up by 6 lego figures” – the audience laughed.
He made no promises about 100% cures or 100% prevention but ultimately we were left with hope.
He ended well stating “none of this research would have happened if it wasn’t for the money from JDRF” and thanked us for giving it.
If you read this Dr Tree, thank you very much for what was one of the best presentations I’ve ever seen.

Meeting up with AmyTwo

Whilst the talks were going on I spotted AmyTwo, a couple of rows in front of me and at the end I went over to say hello.
“Hi, are you Amy?”
“No, I’m Alice”
Oops. I apologised and sheepishly walked away.
Whilst looking at some of the stands the real AmyTwo spotted me – I’m guessing my t-shirt trick worked once more. I didn’t recognise her at all from her avatar, thank God she found me.
AmyTwo was due to be in Jane’s group at the JDRF Volunteer Speaker training course last week but unfortunately she couldn’t go so we chatted about that for a while until it was time for her to go.

Meeting up with local parents and preaching about pumps

I thought I recognised someone from the carbohydrate counting course the other month, I had, it was another parent, Steve, whose young son has type 1.
Steve told me that they’d only done the carb counting course because they’re looking into pumps and that they just needed to decide between one of the two pumps the hospitals offer (Medtronic and Roche).
“Two? Actually Steve you have more choice than that, Amy’s getting an Animas Vibe in two weeks.”.
I couldn’t help myself extol the benefits of the Animas Vibe, citing waterproofness, the colours, the lack of bluetooth, the CGM potential, the waterproofness (again).
Steve seemed quite interested and asked for my details.
I hope we’ll be in contact soon as it’s important choose the right pump – when they have a choice – and it’s important to know what your choices are.
Steve, if you’re reading this, I’m sorry if I went on a bit about the Animas pump 🙂

Like a red rag to a bull

I only wore the GBR30/30 t-shirt so AmyTwo could recognise me but on the day three people came up to me and asked if I was something to do with Gavin’s challenge.
They were pleased when I said “yes” and they all asked me questions about what I did (cycled 100 miles, last 4 days), how Gavin was during/after his challenge and each one of them ended with something similar to:
“That lad has been an inspiration to me/my-daughter/my-son.”
“You’re right, he is, isn’t he!?”

Chatting with JDRF staff

Just before I left I chatted with JDRF South’s Louise about everything that’s been going on, with our fundraising efforts, Jane’s volunteer speaker role, Amy’s fundraising and forthcoming pump.
She was so pleased with our efforts and kept thanking me but honestly it’s the other way around, if it wasn’t for what JDRF do people wouldn’t do what they do…and then there’d be no hope for a cure for Amy – one and two 🙂

Getting an insulin pump – a date with a pump

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Animas Vibe pumpsAnimas Vibe insulin pumps

Rung six (or is it seven) – a date with a pump

Today, sat at work, just recovering from my 12 mile cycle to work I got a call from a number I didn’t recognise. I didn’t answer it immediately but then saw it was a Winchester number, who could it be, I’d better answer it.
It was a DSN whom I’ve never met whose recently joined the diabetes team and it was the first time I’d spoken to her, but what a first conversation to have, which lasted for the next 24 minutes.

Damn you email Spam filter

The DSN had sent me an email yesterday and was surprised not to have had a response, the team at Winchester had obviously told her how internet-addicted I am and how keen we are for the pump – I may have emailed them one or two too many times recently asking progress 🙂
I hadn’t seen the email, it had been caught up by my email spam filter which had decided to ditch everything I did want and nothing I didn’t.

Is the 20th July any good?

I wasn’t near a computer to read the email so the DSN went over the details: would dates for the 20th and 26th July be okay?
“Yes, of course, fantastic, wow, this is great”. “But I just want to check when Amy is going on the school trip in July first”.
We spoke around different issues for a while, discussing how very confident we feel about going on the pump – yes, yes, we know it’s not a cure, yes, yes, we know that Amy might not enjoy the experience – and we spoke about initial use of saline or insulin.
The DSN said she’d like to meet us before the first date, “how about a week and a half before the pump, perhaps on the 10th”.
“Yeah, sure, 10th, that’ll be fine. That’s a Wednesday right?”
“No, the 10th is a Monday”.

Hold on, you mean June?

“10th July, that’s definitely a Wednesday.”
“Sorry Kevin, I’m talking about June, not July.”
“For the chat? Then the pump in July.”
“Erm, no, for everything.”
“Crikey!”

Saline or Insulin?

Many people seem to use Saline for a week or two, just to get used to wearing the pump: we discussed the issues over what would be best.
Initially we both thought Saline would be best but…Amy’s off on a school trip to Europe mid July. So we decided going on insulin immediately was the best idea, to give us 3 weeks to iron out any issues.

A date with a pump

So there we have it, Amy will be getting her pump on 20th June, going on insulin straight away.
I’m so excited.
One week later we’ll go back to clinic to check everything’s okay and learn all the advanced techniques.
I think we’ll find it hard not to use combo-bolusing immediately!
Two weeks later Amy goes on a school trip to Germany.
Actually, I’m now blooming nervous. I wasn’t before but I am now.

 

Did I mention that Amy will be getting her pump on the 20th June? 🙂

Amy’s JDRF T1Kids magazine article about India

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T1 Kids Magazine front coverAmy (in pink) on the front cover of the JDRF T1 Kids magazine

My daughter, an author, wow

Today the latest JDRF T1 Kids magazine hit the doorsteps of houses around the UK, being delivered to thousands of children who have type 1 diabetes.
I’m immensely proud that Amy has a two page article within it and even more proud that a picture I took of her fills the front cover.

Thank you JDRF

I’d like to thank JDRF for many, many things but especially today for printing Amy’s article.
Special thanks go to Kate from JDRF, who has been so helpful organising this from their end, encouraging us, giving us ideas and creating the final article from a mass of words sent to her.
Thank you Kate for giving me permission to reproduce the article on my blog.

How did it all start?

We’ve been subscribed to JDRF’s T1Kids magazine for a while now and have read the articles with interest. In early January, whilst thinking about how to motivate Amy as part of my New Year’s resolution I came across a request for articles for the magazine.
Well, let’s think…hmmm….my newly diagnosed 10 year old backpacked around India, had a great time and survived. Yeah, that’s an article. Actually though I first suggested that JDRF read Amy’s auto-biographical blog article on her diagnosis and only mentioned India as ‘maybe you’d be interested…’.
I pinged off an email to JDRF which got to Kris – whom I’ve only just realised is someone I’ve followed on Twitter for ages. He passed it straight to Kate who’s in charge (I think) of producing the T1Kids magazine. She was very interested in the idea of an article about India as they’ve not had many/any like that before.

From blog article to magazine feature

First I needed Amy to do the full article for our blog as this was to be the final one in a 14 part series about our trip to India and dealing with type 1. It took a long time to get round to this due to other commitments. Here’s a link to the series of articles: Travel in India with diabetes and Amy’s India blog article.
The article was sent to Kate, who then reworked it to fit the magazine style. Amy had written so much that it gave Kate a hard time trying to figure out what to cut.
A few proof checks here and there and on 24th April we received the pre-print version in all it’s glory.
I was amazed how good it looked, all typeset with the paper elephants everywhere.
Amy was so chuffed.

Opportunities through Diabetes

This is a shining example of how opportunities to break out of the box come from having something like diabetes.
Don’t get me wrong, I’d prefer that Amy never wrote this article because I’d prefer that she didn’t have diabetes, but she does so let’s just get on with it and seize opportunities like this when they occur.
Well done Amy for seizing this opportunity. So proud.

Do you want to get hold of the magazine?

If you just want to read the article you’ll find it below, but perhaps you want to subscribe to the magazine for you or your child to read.
Here’s the links to do just that and the good news is it’s free, although I’m sure you’ll give JDRF a small donation whilst on their site 🙂
Order a single copy
Subscribe to the magazine

The front cover

T1 Kids Magazine front cover

The main article

The main article is split across two facing pages but I’ve split it so you have a chance to read it.
If you can’t quite read the images on this page either click them to open them up in full within your browser, or better still just use CTRL and + to – to zoom your browser in and out (works with Firefox, Chrome and Internet Explorer). In some browsers you can hold CTRL down whilst scrolling your mouse’s scroll wheel.
T1 Kids Magazine left page
T1 Kids Magazine right page

The Portsmouth “SweetMeet”: A privileged invite

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Dr Iain Cranston gives a talkDr Iain Cranston let’s us know about future improvements

Many months ago Dr Kar from Portsmouth’s QA hospital tweeted a question to the diabetes online community to see if there was any interest in an idea he (or his team) had: would people like the opportunity to meet with healthcare professionals outside of the normal setting, asking questions openly and receiving open answers.
The response was positive, especially from me, and the QA team set up organising the event.

Why?

The need for an event like this was clear to me: it would give a chance to speak openly with professionals who don’t have a defined set of questions to get answers to, or things they have to inform us about. I could ask those questions which seemed silly to me, the sort of things I don’t want to waste anyone’s time over, the sort of thing I would definitely not call the clinic about.
Clearly others felt similar things.

Progress, announcement, sadness, happiness

I’d been following the discussion about the SweetMeet before my Twitter friend Laura even put that name forward. I was excited about attending, along with Amy.
The announcement came out that it was on the 11th May and was open to any type 1 diabetics…who were over 17.
Darn it, Amy’s only 12, I can’t go.
I wished Dr Kar luck but said it was shame I wouldn’t be able to go and he replied by saying he had the power to break the rules for certain individuals.
Great, we’re in, I was happy again.

A simple terms of reference

Initially it was difficult to figure out what the event would be like until Dr Kar coined the phrase “Speed Dating With The Professionals”.
Now it all made sense.
The mention of free bacon sandwiches smoothed the way for many I suspect.
The layout of the morning was set as follows:
– welcome & introduction by Dr Kar
– a speech about patient experience by my friend Laura Cleverly
– speed dating with the professionals
– a speech by Dr Cranston about what’s on the horizon for type 1 diabetes
– an open forum with Lisa Skinner, Diabetes Nurse Specialist

The funny moment of trying to register

When trying to register for the event I called and spoke to a lady who took my details.
“Your name?”. I gave it.
“Your address?”. I gave it.
“Can I just check that you’re over 17 and have type 1 diabetes?”. “Erm, well actually no, but I’m allowed to come, just put me down and ask Dr Kar.”.
“Erm, okay” she said.

The event starts

Driving to the event today Amy and I wrote down as many questions as we could, just in case we got the opportunity to ask them.
Arriving this morning we registered and met with Laura and quickly found the bacon rolls, mmmmm bacon!
We looked at the stands and happened across the one run by the widwife team. “Okay, Amy we don’t need to worry about this for a little while”. Instead of moving on we had a really good chat with the two midwives there.

Ladies and Gentlemen take your seats

It was time to take our seats and when walking into the room we headed to the back only to be greeted by a “hello Kev, what are you doing here?”. It was a guy from work, a guy who I see often, a guy I’ve played football with for years, a guy who had type 1 diabetes, yet I never knew.
It was great to bump into him and have a great long chat about diabetes care, pumps and stuff.

Intro by Dr Kar

Dr Kar is an eloquent speaker, a great advocate of good service by his team and someone who could literally talk for Britain, but in a nice way. He’s so enthuastic about being able to work together (patients and professionals) and shape the future together that listening to him talk about it makes you feel so positive.
He spoke about how the event came about, the ideas, the desires and then he passed over to Laura.

Laura’s story

I only got involved with the Diabetes Online Community after a friend spoke about Laura’s Ninjabetic support group (read this) being in the news. We’ve spoken on Twitter so many times that Laura seems like a member of the family and I know her story so well.
Laura, Mark and I had tweeted earlier in the week about Laura’s speech: she didn’t know what to say. She suggested the three of us do a flash mob but luckily Mark and I turned it around and suggested she just spoke about herself, about her diagnosis, about her salvation from the dark days of ignoring diabetes care.
She spoke from the heart about her diagnosis, a story I could relate to so well, a story I knew off by heart. I was quite moved, more than I’ll admit to for sure. My tweet sums it up:

Speed dating starts

We all sat around the 7 tables, there was six on ours including me, Amy, Laura (@ninjabetic1) and Mark (@thedteam2) who’d travelled all the way from Swindon, plus two other guys from the Portsmouth area.
Each of the 7 professional people/teams switched from table to table to table in true speed dating fashion, having 8 minutes each.
In those 8 minutes we had to get through multiple questions from our side and theirs. This event wasn’t just about patients getting answers it was also about professionals finding out what patients require, so that they can improve their service.
All in all it worked very, very well, it was just that 8 minutes wasn’t enough, we could have done with about 30 minutes each, but that just wouldn’t be realistic.

Meeting Derek, refreshments and quiz time

At 11:15ish we broke for refreshments which gave me a chance to chat with my friend from work. Whilst talking 76 year old Derek Bockett said hello and we had a nice chat. I recognised him from last year’s JDRF Walk To Cure which we’d done. He’s an amazing chap, 76 years young, full of life, fit as a fiddle and has had type 1 diabetes for 61 years! He told us to keep active and make sure we kept ourselves well. What a great advocate for diabetes.
Amy came up and asked me to fill-in the carbohydrate counting quiz: she’d done it and wanted to increase our chances of winning the prize. I didn’t bother.

Talk by Dr Cranston

Back in the room and Dr Cranston (Consultant Diabetologist – and more importantly Laura’s pump consultant) gave a great presentation about what’s on the horizon for type 1 diabetes, current stuff, future stuff and some quite complex stuff. I enjoyed the talk even if some of it flew right over my head.
I really admire Doctors who give talks like this. As a geek I know how hard it is to get things across in a language which is understood by the layman, without comprising what you need to say and the points you need to get across. Dr Cranston did this extremely well.

The quiz result

It was time for the carbohydrate counting quiz result.
Who had guessed the right amount of carbs for a Sunday Roast and a Spag Bol? Not on the same plate you realise, there was two plates 🙂
“The roast was 50g”. Amy whispered an emphatic “Yes!”
“The spag bol was 90g”. Amy wispered “darn, I said 100g”.
“And the winner is….Amy Winchcombe”
I let out a “Yesssssss!”
The problem was the the prize was a bottle of champagne and Amy was 12 and it wasn’t good form for a healthcare professional to be giving alcohol to a 12 year old. I said that that’s the standard age to start drinking in Portsmouth but (luckily) no-one heard me.
The champagne was given to Laura, sat next to Amy, who put it on the table.
Yay, we’d (erm I mean Amy had) won some champagne.
I’m so proud that in a room full of diabetics many of whom have counted carbs for years that Amy’s knowledge proved the best. Well done Amy.

Getting an insulin pump – official pump demo – Animas Vibe

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Rung five – official pump demo – Animas Vibe

Yesterday we had a 4pm meeting with our local Animas representative Emma at our the hospital. It was Emma’s first meeting with the Paediatrics Diabetes Team at Winchester and that meeting had happened earlier yesterday, which is why I tagged ours on afterwards. Jane and Amy were travelling up separately from another direction.
Jane and I had already had a great demo of an Animas Vibe from Annie a couple of weeks back, but this would be Amy’s first demo, although she’d played with a similar pump earlier.
The RHCH hospital in Winchester only has a couple of adults using an Animas pump, if we go for it Amy will be the first child with one.

Like a blind date

It was funny though, like a blind date where literally I had no idea what Emma looked like. We’d arranged to meet in Costa at the hospital, but it’s large enough Costa to get lost in. I was first in – Jane/Amy were coming separately – followed in by two ladies. I got a coffee, they sat down, and I scanned them – hey, no, not like that! – looking for Animas logos/words/bags but nothing. So that wasn’t Emma with a colleague then, that’s fine, must keep a look out though. Jane/Amy arrived, ordered drinks, well at least Jane did, Costa don’t seem to do anything for a person with diabetes who doesn’t want to take any insulin at that moment. No-one else came in who looked like a rep, no-one else carrying anything. I thought about texting Emma but didn’t but looked over again at the ladies and noticed a tube on the table, scanning around I saw an Inset II infusion set. I went over and introduced myself. We’d been in the same place together for 20 minutes.
The other lady was from another part of Johnston and Johnston, who’s switching to the Animas side soon.

How to start a demo properly

I’d already prepared Emma by telling her not to talk about or demo filling the cartridge; to make sure needle sighting was kept to bare minimum; to make sure she brought pink infusion sets; to make sure she brought a pink Animas Vibe pump.
Emma looked Amy straight in the eye and said (something like) “Amy, how are you and what are you feeling about pumps at the moment?”, followed by “What are you looking forward to about getting a pump?” followed by “What are you even slightly worried about with the pump?”
For probably ten, fifteen or maybe twenty minutes Jane and I took a back seat and listened to their conversation. This was brilliant; exactly what we wanted; exactly what Amy needed; exactly what should have been done, well done Emma.

A pump of many colours

Emma got out five pumps, one brand new which she Amy to look at, hold and feel. The other four were the demo pumps and came in black, silver, blue and pink. Any guesses for which one Amy picked up immediately? It was pink. The only colour missing was green, but that didn’t matter as we’d seen Annie’s daughter’s green one a couple of weeks back. The green would be Amy’s second choice as it’s a nice looking colour.

On to the demo

Emma asked Amy what she does for a bolus at the moment and Amy spoke about her routine. We then ran through how that would be done on the pump. For once I was quicker on the buttons and menus than Amy, but that won’t last, she’ll soon be operating it and blurred-lightning-warp speed, so fast I won’t be able to keep up, so I’m chalking this up as a win for me 🙂
First bolus done, then another, then another.

Combo-bolusing

Emma demoed the different bolus types and spoke for a while about combo (or ‘split’) bolusing. The idea is that some foods take longer for the ‘sugar’ spike to happen, pizza for example and pasta meals, whereas others spike and drop very quickly, such as things high in sugar and low in fat.
This is not something you can easily do when on multiple daily injections (MDI), you literally give the insulin and it does it job in whatever time frame it works in. You give all the insulin in one go, normally before the meal or after, and the only way you can split bolus is to take two different injections. Name me a 12 year old who will be happy to do that!
It’s so easy to split bolus on a pump and makes so much sense, although I can’t make up my mind whether I’m just sold on this idea and it’s useless or whether it’s a damn handy feature. It seems to make so much sense.
I’m sure all pumps are similar but on the Vibe split-bolusing – or combo bolusing as they call it – is so easy: select the option; say how much (e.g 30%) you want now and how much (e.g. 70%) you want later; set the duration for the bolus (e.g. 4 hours); it’s done. The 30% (or whatever) will be delivered now, the 70% (etc.) will be delivered over the next 4 (etc.) hours.
So presumably the next ‘Carbs & Cals’ book will by ‘Carbs & Cals & Protein & Fat & SplitBolus’?

Basals and Temporary Basals

On MDI Amy gives herself about 13 units of Levemir at a set time each day and this lasts around 20-24 hours. Many people say less, others don’t, it’s a debatable area. One thing’s for sure though and that this Levemir is known as ‘basal’ insulin and has a long acting time, designed to get her through the day and mimic what a healthy pancreas does.
On a pump the big advantage is that no longer is a basal injection required as the pump dispenses a very small amount of fast-acting insulin (Novarapid, Apidra) every 2 or 3 minutes.
This advantage becomes even bigger when Amy is doing some sport as exercise will more than likely drop her blood glucose levels. With the pump you can set a Temporary Basal Rate (TBR) to overcome this, reducing the default basal rate by any percentage (in increments of 10). Setting a 30% TBR means she’ll only be getting 70%(ish) of her normal basal insulin for whatever period she chooses. When setting the TBR you not only decide the amount but also the length of time it’s active for, after which it reverts to normal.

Infusion set change

Jane and I had already done a set change with Annie a couple of weeks back, with Annie placing it on her arm for the first time. I didn’t step forward to be the subject last time but this time I’d decided I’d step up and be the test dummy. Amy didn’t want to do it on herself or on me, so Emma got out a couple of sponge-like pads.
Emma gave Amy an Inset II infusion set and took one for herself. Slowly she talked Amy through the process and explained some of the design benefits of the set. Amy was cautious but managed the change very quickly, although didn’t do one part correctly and the set didn’t stick the the pad. I could tell Amy was concerned this would happy all the time in real life but was assured it is normally ok. She did it again and it worked fine.

End of a great demo

A lot of questions from us and Amy later and the demo ended.
Emma had demonstrated the products very well, she’d answered every question we had, she’d reassured Amy of any worries, she’d confirmed all the good things Amy already knew. Thanks Emma.
Amy left there with a smile.

Getting an insulin pump – pump demo – Animas Vibe

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Animas Vibe pumpsAnimas Vibe pumps

Rung five – (un)official pump demo – Animas Vibe

We went to yesterday’s JDRF Discovery Day in Bristol not just to listen to their talks but also to meet up with lots of people from the online Twitter community for diabetes, affectionately know as the #DOC. One of them, Annie, is a huge advocate for Animas pumps in general and especially of their latest offering the ‘Vibe’ which her daughter has been using for a few months.

*Stop Press: Because Annie is such an advocate of Animas, I propose they are renamed Anniemas for the rest of this article.

What’s in a name?

(If you’re a kid reading this please skip this section.)
Vibe! Vibe!? Why on earth!
This was either a very clever marketing ploy or people in Anniemas’s* Department of Pump Naming lead very sheltered lives and need to get out more.
Amy’s 15 year old sister Emilia has already told Amy she can’t have one of these pumps due to the name and even at 12 Amy knows what it means. At lunch yesterday I got a giggle out of Emilia yesterday by telling her that Paul sat opposite had a black Vibe in his pocket.
If Amy gets one of these I’m going to have to tippex out the name on front, either that or smirk every day I see it, for four years – that’s a lot of smirking.
Dear Anniemas*, for the record please do not call your next pump The Rabbit.

First, the Anniemas* 2020

Annie’s daughter has just recently got the Anniemas Vibe pump and when you change pumps you get to keep your old one, which in this case was the Anniemas* 2020.
The 2020 is very similar to the Vibe, a little smaller in length due to the extra bits the Vibe needs to incorporate CGM (continuous glucose monitoring).
Armed with some old insulin Annie showed me how easy it is to full the pump reservoir from a Humalog 10ml vial, although to be honest I was all fingers and thumbs as this was the first time I’d tried anything like this.
Once the reservoir was filled Annie effortlessly primed the pump quicker than I could ask ‘Annie, how do you prime the pump?…oh, you’ve done it”. 🙂

The Inset II infusion set

Animas Inset II infusion sets in multiple colours

Annie passed me one of Anniemas’s infusion sets, the Inset II, which comes in three colours, this one being white. Some people say the pink ones hurt less; I think that may be a myth.
Anniemas’s* infusion sets are self contained, everything you need to do a set change is contained in the set itself: there’s no need for you to carry any set insertion device like you do for the Accu-chek Combo.
These infusion sets fit any pump whose reservoir has a Leur lock at the top, so they can be used on Anniemas*, Roche and Medtronic pumps. I found this out from another Twitter user who used to use an Anniemas* 2020, moved to a Roche Accu-chek Combo but didn’t like their infusion sets so uses Anniemas* ones instead.
Annie talked me through preparing the set for insertion. I said “you do know I’m not going to put this on myself don’t you?”. She just smiled.
Once the set was prepared I re-iterated I didn’t want to insert it on myself – now though I wish I had – so Annie took it, pulled up her sleeve and inserted it into her upper arm. She didn’t flinch. I’ve only found out since that she’d never done this before in her arm and didn’t know whether it would hurt. She says it didn’t, I’m glad.

Bolusing and calculating carbs

Bolusing on any pump is a relatively straightforward affair and the Anniemas* is no different than most. It does have an audio bolus option which is designed to allow you to bolus without looking at your pump. As Paul – who runs GBDOC web site and tweetchats – said, you press then button and it beeps allowing you to count the units, meaning that a hidden pump does not have to be accessed. Don’t be confused though, this is not a rival for the covert bolusing offered by the Accu-check Combo.
Amy and I played with the insulin-filled 2020 and within seconds she was bolusing, dripping insulin all over my fingers – the little tyke! (ha ha). We played with all the other functions and it made Amy realise that a transition to this pump wouldn’t actually be a problem.

Food list

Annie hasn’t really set this up on the new pump but the Vibe has a food list. It’s a list of up to 500 foods and their carb values and could serve a limited use, although with mobile phones these days and MyFitnessPal – other apps are available! – it’s hard to see it being used a great deal. Ironically, for a pump which is regulated in the UK (but not the US) for CGM use, the food list is not populated in models outside of the US. So UK users need to create their own food list, from scratch.
Having said all this it could come in useful as Amy is due to go to Europe on a school trip a few weeks after (hopefully) getting her pump. We could therefore pre-load a Vibe with a list of common foods indigenous to where she’s staying. This would be useful as she’ll not have an internet connection on her phone whilst there.

It’s waterproof

Yeah, yeah, it’s waterproof, it’s got an IPX8 rating just like the Accu-chek Combo has. So why then do Roche tell you to try not to get the Accu-chek Combo wet, whereas Anniemas* actively encourage an occasional dunk.
A friend Laura told me last week that a mutual #DOC friend was at the Anniemas* stand at this year’s HPC13 conference and their rep told her to dunk her Vibe in a pint glass of water and leave it there. They’re obviously pretty confident about their IPX8 rating. (IXP8 means ‘Protected against water submersion – The equipment is suitable for continual submersion in water under conditions which are identified by the manufacturer. ‘.)
For info Medtronic’s Paradigm Veo pump is rated as IPX7 (Protected against water immersion – Immersion for 30 minutes at a depth of 1 meter).

Ergonomically easier to sleep with

Paul made a very valid point (I’d not thought of) when he showed us the back of the Vibe. It’s curved. This, he said, made it much nicer to wear against a curved part of your skin. He also said that as he’s got to carry or wear his constantly for the next 4 years it makes sense to pick a pump based on weight/size/design. It’s a very valid point (yet again).

JDRF Discovery Day (Bristol, 27th April 2013) and #DOC Tweetup

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Roche Accu-chek Combo pump and meterJuvenile Diabetes Research Foundation – the world’s biggest Type 1 Diabetes Charity

What’s a Discovery Day?

A JDRF Discovery Day is an event which is organised by JDRF for its supporters to learn about research currently going on, about reasons why people get type 1 diabetes, about other interesting areas to do with type 1 diabetes.
Parents and kids are welcome to listen to the presentations or the kids are welcome to attend activities being held outside the room and run by volunteers, making it easy for parents to listen undisturbed.
If you follow JDRF in any way you’ll find out about these Discovery Days but all the information is on their web site here: http://www.jdrf.org.uk/research/research-events.

Booking this event

I first booked a Discovery Day being held later on this year in Dorset, it was the nearest one to me and we’d never been to one before.
I put a tweet out asking if anyone else was going to the same event; no-one was, but a couple of people were going to one in Bristol. Bristol isn’t that far away, sub two hours, and I wanted to meet these two people so I changed plans and booked for Bristol.
Before I knew it more and more people had registered to go to Bristol, there was likely to be quite a few of us.
The most amazing news arrived that Derek and family were going to come too, a 5 or so hour drive down.

The day draws near

A couple of others had registered too and in total 60 families had registered for the event.
The #DOC’s own party organiser Annie booked a table for several of us (Paul, Polly, Mark, Sarah, Derek & co, Annie & co, me & co, plus a couple of other local families) to eat at the buffet place Cosmo in town afterwards.
It was going to be quite a day.
The night before I changed my avatar to a picture of the t-shirt I was going to wear and put a tweet out to come and say hello if you recognised it/me.

An early start

Up at 6:30am and out the door and on the road by 7:40am meant we arrived spot on time at 9:30am in Bristol and headed for the venue, @Bristol, a cool science centre. We registered and looked around to see if I could recognise anyone; I didn’t. Oh dear, how were we going to meet up?
I was just getting a coffee and Derek tapped me on the shoulder, thank God for that, at least there’s a few of us.
A quick chat and I went to retrieve my coat and got recognised – the t-shirt avatar was working – by Chris and we had a great chat about the GBR3030 John O’Groats to Land’s End run that Gavin Griffiths was starting at that exact moment.
Others turned up, Annie & crew, Paul, Mark and Polly but where was Sarah?
Another tweeter Louise came over to say hello to me too.
This was already turning out to be a great day and the event hadn’t even started.
But where was Sarah?
Jane and I sat down, with Derek’s family next to us, and Annie’s family next.

The talks begin

First up was a great talk about JDRF by one of the organisers Danielle, who spoke eloquently about the charity and the work they do.
Next up was a JDRF research Doctor named Maebh. She spoke well about the avenues JDRF research is taking, what’s happening now, what’ll be happening soon. When it came to questions people fired research questions at her and understandably she answered well, then a few people asked JDRF questions and still she knew the answers. I was very impressed with her knowledge, given her tender years.
Next up was a research scientist from a lab in Bristol. She spoke very well about what is causing the surge in type one diabetes and demonstrated an excellent knowledge of what research is going on around the world. Admittedly I got a little lost with some of the words but it all seemed to make sense and I left after this demo and the previous one with hope that at some point the cause would be isolated and prevention of it could be researched properly.

Having a bit of fun

During the next presentation I checked my tweets and saw that others had been tweeting; I couldn’t help but join in.
I saw Annie’s tweet about her location:

I couldn’t help being a little cheeky:

Moments later I felt the row of chairs move and saw Annie get up and walk towards the tea trolley, Derek saw her too, we both started laughing quietly, leaving Jane wondering what was going on.
A minute later and a nice hot cup of tea was being passed hand by hand along the line, to a very pleased Jane. Thanks Annie.

My favourite presentation

The highlight of the presentations for me was given by someone diagnosed with type 1 diabetes in 1966, Colin Rowland. This was no death-by-powerpoint, it was a heartfelt chat with a very interested audience.
Colin spoke about technology; about how when diagnosed his mum was constantly boiling his glass syringe with its huge needle; about how the first ‘technology’ he ever had was his Palmer Injector; about how today’s improvements make him think that in reality the artificial/bionic pancreas isn’t far away. To us ‘far’ might mean the year after next, to Colin it’s a greater number but one that will arrive.
Whatever technology we’ve got now, or in the next couple of years it beats the Palmer Injector he showed us.
Read more about Colin on his facebook page.

Time for lunch

After it was all over we headed to the all-you-can-eat buffet place Cosmo. We were quite late after seeing the delights of Bristol time and time again and we circled the one way streets.
Lunch was good and I was lucky enough to be sat within chatting distance of Polly and Paul and the next hour or so flew by faster than one of Paul’s Wednesday night tweetchats. I feel Paul may have bitten off more than he could chew when asking me about my interest in India. I know I’m an India-bore but I just can’t help it; give me a platform and I’ll talk about it for hours.
I felt a little guilty as I tucked into whatever I wanted to eat without a care in the world about carb-counting or bolusing as Amy and Jane were sat on another table.
After lunch we had a good chat and Annie gave me a demo of the Animas Vibe and associated kit, more on that in the next post.

What a great day

Today was excellent, I really enjoyed myself, I learnt loads of stuff and came away from the presentations with far more hope than I entered with. If you’ve never been to one, book one up now, it’s really worth it.
The #DOC people there today were a great bunch, a bunch I am pleased to be considered a part of.

Getting an insulin pump – pump demo – Roche Accu-chek Combo

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Roche Accu-chek Combo pump and meterRoche Accu-chek Combo pump and meter

Rung five – first official pump demo – Roche Accu-chek Combo

After our carbohydrate counting training refresher yesterday morning we stayed at the hospital for lunch as we were due to have a demo. It was all a bit of a rush as we only had 40 minutes to each lunch and switch locations, something not helped by spending 10 minutes trying to decide which sandwich to buy: Amy hates sandwich fillings, there’s nothing she likes that a sandwich retailer would sell. Luckily after 10 minutes I spotted the jacket potatoes.
All fed and watered we went to our demo.

The waiting room

The pump demo was also being given to a husband & wife whose little 5 year old is also due to go on a pump after having diabetes for one year – they’d been sat next to us on the carb course.
Our DSN arrived with pump demonstrator Helen who was pulling a huge crate of pump supplies and accessories.
I understood that this was due to be an informal chat about the pump with one of Winchester’s nurses, so I was very pleased to find out Helen is one of Roche’s pump specialist nurses. This was good news, we were likely to find out far more information than I originally thought.

First look

Helen gave both families a demo box containing the pump and meter. The sturdy looking box had been prettified, kiddified, to aid presentation but Amy opened it up faster than she unwraps Christmas presents and started playing with the pump straight away.
Amy stole ours, I didn’t get a look in.
Helen demoed the functions to us, a job made easier as both families were already using Roche’s Accu-check Aviva Expert meter, which turns out to be virtually the same meter as used with the Combo pump.
Roche had clearly been quite clever with releasing the meter for non-pump users as it makes the transition from their meter to their pump so much easier for everyone: the nurses; the parents; the kids. Helen told us that the meter was originally released for the pump and later amended to work for people on injections.

The meter – we love this meter

Accu-chek Aviva Combo meter, almost identical to the Aviva Expert

Amy had been using the Accu-chek Aviva Expert meter now for some time and it’s been great for her/us because of its bolus advisor.
To explain the testing/calculating/eating scenario which people with diabetes go through every day:

  • 1. test their blood glucose
  • 2. calculate the carbohydrates in the food
  • 3. calculate how many units of insulin they need for the meal, often using pen and paper (as we need to divide by 13 or 12 depending on the time of day)
  • 4. adjust the insulin amount depending on whether they’re high or low, and figuring out whether they already have insulin in their body which is still ‘active’ or ‘on-board’ as we all say.
  • 5. inject insulin. which can be broken down as follows:
    •     5.1. find the correct insulin pen containing the fast-acting insulin
    •     5.2. place needle on the pen
    •     5.3. do an ‘air-shot’ removing any air in the new needle, we use/waste 2 units of insulin for this.
    •     5.4. Amy needs a quiet uncrowded place, which takes time to organise
    •     5.5. remove clothing if required
    •     5.6. inject insulin, counting to ten whilst the needle is in.

  • 6. finally they can eat.

Diabetes is exhausting, you can see why.
Using this meter the process is simplified:

  • 1. test blood glucose
  • 2. calculate carbs and enter it on the meter. The meter tells you exactly how much insulin you need to take, using your ratio for the time of day and taking into account any active insulin
  • 3. inject insulin, using steps 5.1 through 5.6 above.
  • 4. eat.

If you’re on MDI (multiple daily injections) then I suggest you take a look at this meter, it really does make life easier, so much so that I can’t understand why anyone on MDI wouldn’t use it.
The only key difference between the Combo meter and the Expert is the addition of a ‘pump’ settings menu, where you can set the various bits to do with the pump.
Helen demoed the meter, a few seconds behind Amy who’d already sussed it out, without any explanation.
Amy hadn’t really listened to Helen but I could see that Amy had already given a bolus for the virtual 225g she’d eaten and the pump whirred away quietly giving it’s virtual insulin, or air as we like to call it.
So within minutes Amy had already become proficient enough to use the pump. There’s obviously more technical stuff to learn but the simple stuff is just that: simple.

The pump

The Accu-chek Spirit Combo pump

The pump itself is quite small measuring roughly 8cm x 6cm by 2cm and weighs in at only 110g when full of insulin.
Like the Ford Model T car you can get it in many colours such as black, black or black. They do give you lots of stickers to customise it with though.
So, from the outset it’s not quite as pretty as the Animas Vibe which comes in multiple colours but doesn’t that matter? Should you ever choose a medical device based on its colour? (I’ll avoid the obvious jokes and women and cars at this point.)
The pump is waterproofed as much as any other pump but for some strange reason Roche suggest you don’t get it wet, just in case the casing has cracked after leaving the factory. This is certainly not a plus point for this point; they might as well tell us it’s not waterproof.
The pump runs on an AA battery which they supply, but more importantly they’re available everywhere. If you run out at any vital point the chances are you can at least borrow a battery from a remote control or camera or something.
The pump should last up to 25 days on a single battery.

The infusion sets

Helen demoed the three types of infusion set – the part that sits on and in the body with its little canula.

Rapid-d

Rapid-D Link: The first set is very small as has a metal cannula either 6mm, 8mm, 10mm or 12mm long. The great thing about this set is that you just hold it as you would for an injection and push it in the skin. Helen demoed it on our DSN – lucky her! – who I’m glad to say didn’t move, cry or scream. The only downside I could see was that it has a trailing bit of tube, a few inches long, which will always be there, even if you disconnect the pump to go swimming etc..

Flexlink

Flexlink: The second infusion set was the called the Flexlink. It was the one Amy had seen before; the one which made her realise her fears of something metal inside her didn’t need to stop her from getting a pump. The Flexlink features a soft teflon cannula which can be disconnected at the infusion set, without any trailing tubes once disconnected. It’s great that it’s got a teflon cannula, it solves Amy’s issue, but there is a downside: being flexible means it needs to be inserted with a special inserter. This didn’t bother us as the process seemed very quick as Helen inserted the set on/in her, but the other family quite rightly said ‘oh great, another bit of equipment to carry around’.

Tenderlink

Tenderlink: The third infusion set was called the Tenderlink and gives the benefit of being able to insert it at an angle, especially useful for fit/lean people who have less body fat. It’s inserted by hand at any angle between 20 and 45 degrees. Once in the needle within the cannula is easily removed and the pump tubing clipped on. Honestly though that needle looked huge and I can’t imagine Amy doing this herself. I’d previously told Helen about Amy and fears of metal cannulas and this one is the one when Helen told Amy not to look, I can see why.
Easy choice: It was a simple choice, Flexlink it would be if we go for a Roche pump. Insertion is easy with the tool which makes it nigh on impossible to get wrong; the soft teflon cannula cures Amy’s needle-in-the-body fears. I can imagine Amy being able to do this set change herself without problem.

Downsides

In my mind there’s only one downside to this pump: it has no ability to work with a CGM (continuous glucose monitor). Helen said it never will and that any other devices from them aren’t likely to reach the market place within the next couple of years.
This isn’t a massive downside as such as it’s always possible to purchase – for example – a Dexcom G4 CGMS but you’d have to fork out £650 for the Dexcom’s display unit, something you would not have to do/spend if you had an Animas Vibe, as it’s built in on that device.
When you take on a pump it’s a 4 year plan, you can’t upgrade (I asked) if a new better pump comes along. Amy’s 12 at the moment and over the course of the next four years will go through some of the most glucose-challenging years possible. She’ll take GCSEs for probably three years on the trot and it would seem a CGM during these times would be incredibly useful.
For those reasons I’m very interested in self-funding CGM, even though it’s incredibly expensive (up to £240 per month). We’d probably only use the CGM when required, to save money, but I’d really like the possibility of doing it, without having to fork out £650 for G4’s monitoring device.

Covert bolusing via Bluetooth

This has got to best the best selling point about the Combo; I can imagine they win over their competitors so much because of this.
The meter is connected to the pump via Bluetooth (ooh Bluetooth says my inner geek).
After the user has done a blood test and entered the meal’s carbs on the meter they press one button and the pump is instructed to deliver the insulin. That’s it!
(In reality there’s lots of bolusing options but for a simple bolus it’s a single button.)
So what that means in reality is that the pump does not need to be accessed. If it’s hidden under clothing, or wedged in a pocket, it doesn’t need to be removed, or touched.
You tell me a 12 year old who doesn’t think this is cool.
CGM or not this pump is the strongest contender at this stage. Medtronic is out IMO so only the Animas Vibe can beat this one.

Getting an insulin pump – carbohydrate counting training refresher

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The NHS Eatwell plateThe NHS Eatwell plate.
(not for each meal you understand)

Rung four – carbohydrate counting

This morning Amy and I attended a carbohydrate counting training refresher course at our local hospital in Winchester. We’d already attended a similar session back in September 2011, just after we returned from India, when we switched over from giving a very rough estimate of insulin based on meal size, to a more accurate carb counting method.

Starting off badly

The day did not start at all well: we left the house at 8:30am giving us one hour to cover the 8 miles, easy, no problem. At mile 2 we joined a 5 mile queue which – on checking the traffic maps – had no way out.
We were going to be late.
Dammit.
On reaching the hospital already late we parked in the only single space left in the car park and rushed to the education centre, the one we’d be to before.
They’d moved it…to the other end of the hospital complex, right next to the car park.
We ended up being 30 minutes late.

5 families, 2 kids, 2 dieticians and 1 nurse

There were 5 families there, 3 couples came without the child with diabetes as they were only 4 or 5 years old.
The other family were from the village next to ours and live down the road from us. Amy knew the boy – let’s call him ‘B’ to protect the innocent and all that – from her previous school.
Amy is only one year older than ‘B’ but that year is immense in school years so clearly she’d never spoken to him about diabetes much, if at all. They say there’s strength in numbers, but not if you’re an 11 year old boy and a 12 year old girl.
There were two dieticians there, one to take the session, one to take notes and help out where required.
Our wonderful diabetes specialist nurse ‘V’ was there.
The session objectives were read out and off we went.

5 families, 1 plate and lots of food

On the table in front of us was a massive – 2 metres by 2 metres – canvas with a plate on it. The plate was divided into sections for fruit and vegetables; bread, rice, potatoes and pasta; meat, fish, eggs and beans; high fat and high sugar; milk and dairy food.
It was the NHS Eatwell plate, but without the food.
Then came the plastic food, lots of it, tons of it even.
We each took some food and placed it into the section we thought it should go in.
We all did very well and whilst most were placed correctly, others were not, but only a few.

To carb, or not to carb, that is the question

William Shakespeare’s Hamlet may be been completely different if it was written after the discovery of carbohydrates, but alas the immortal words are the rather less catchy ‘to be, or not to be’.
Next up then was the does-that-have-carbs-or-not quiz using the same food items, pushing those with carbs to the right, those without to the left.
That game is so easy, especially if you change it to the would-I-want-to-eat-it-if-I-was-hungry game.
All hungry people’s brains scream ‘give me carbs’ don’t they? Never I-am-so-hungry-I-could-eat-some-lettuce.
So this quiz was pretty easy for all, bar the odd argument from me – more on that later.

Breakfast time beckons

Next up we were given printed plate photos of breakfast items, ranging from two crumpets with butter, through cereal, to a full English breakfast.
It was okay though as I’d only recently eaten my cereal so the sight of all this food didn’t make me hungry.
In teams we estimated the carbs and went round the room discussing why we’d reached that calculation, before finding out the right value.
What surprised me was how good some of the people were at this. ‘B’ and Amy were by far the best at this game, which surprised me. Amy’s been carb counting for 18 months now but ‘B’ was here to learn but already seemed to know it all.
The same game was played with lunch and dinner and it generally went well.

The Fish Finger Conundrum

One of the biggest discussions was about fish fingers. One family knew the ones they have are 17g of carbs for 3, but course notes said 15g and the book Carbs&Cals says only 9g.
It didn’t seem to matter too much to most but the conversation carried on quite light heartedly throughout the rest of the session, almost like an in-joke between friends.

If it’s got carbs you should count it, shouldn’t you?

During the carb estimates whenever there was just one tablespoon of 5g-carbs veg it wasn’t counted.
It’s 5g of carbs.
The dietician said not to count it, you didn’t need to, it’s only 5g carbs.
“Okay” I said “what if there’s three lots of 5g veggies?”.
We were told we’d need to count the 15g in the total.
“Okay, what if there’s only two lots of 5g veggies?”.
“That’s okay, you don’t need to count it” the dietician said.
My logic brain took over and couldn’t keep quiet. “What? That makes no sense, 10g carbs will raise many kids glucose levels by 3mmol, which in turn needs 1 unit of insulin. Counting the 2 lots of veg at 10g could be the difference between going hyper or not.”
I was told again the we didn’t need to count it.
In my head I agreed to disagree, it wasn’t worth arguing but it still makes no sense to me.
If anyone can explain this to me – without resorting to a ‘just because’ – please leave me a comment; I really don’t understand it.

Getting an insulin pump – climbing each rung and setting up pump demos

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picture of a ladderThere’s many rungs on the ladder towards the pump

Climbing each rung

I’ve viewed the progression to Amy getting a pump as a ladder, one that we appear to be well and truly on. For the record I don’t really like climbing ladders but I’ll make an exception for this one.
The first rung on the ladder is just learning about the basics about pumping, so you can decide on whether you want one.
The second rung is making that decision and requesting a pump.
The third rung is getting back a response from the hospital that you’ve not been totally denied the opportunity. (You never quite get the ‘yeah okay, that’s fine, funding is in place, just pick a pump’ response so anything other than a ‘I’m not sure you’re eligible’ should be seen as a good sign.)
The fourth rung, at our hospital, is to be invited to and attend a carbohydrate counting training session.
Our fifth rung will be to get some demos from either the special pump nurses or by reps from the pump companies.
I’m not sure how many more rungs there’ll be but we’ll worry about that later.

Where to start the research?

I’ve felt a little bewildered on where to start with fact-finding about pumps, even though there’s only 3 key runners available to me.
It should be simple when you consider that it took only an hour or two to decide I wanted the buy the house I’m currently living in and considering the cost of a house against that of a (free to us) insulin pump it’s hard to figure out why we wouldn’t just take the first suggestion from the hospital.
I mean this diabetes malarkey is hard enough to contend with at the best of times so why not just let someone else choose the pump?
But somehow there’s no “oh it’s lovely” or “that’ll do” with the pumps and once chosen we’re tied into it for four years, so we’ve got to make the right choice.
Or do we? Does it really matter? Aren’t they all the same!?
I didn’t know the answers and worse I didn’t know the questions, hence my bewilderment.

Research, research, research

For the past few weeks I’ve been lightly researching the pros and cons of each of the pumps which are available to us, which are by Animas, Medtronic, Roche/Accuchek. The Omnipod is available to us but our clinic will only partially fund it as it’s a lot more expensive, so I’ve discounted that one as partially funding it isn’t an option my bank manager will agree to.
I’m not sure exactly which models are available for us to choose but for now I’m presuming it’ll be the Animas Vibe, the Medtronic Paradigm Veo and it’s definitely the Roche Accu-chek Combo. The Medtronic model may not be the Veo but I’ll do my research on that to start with.
I’ll probably do another post on the information about each pump once I’ve learned more about them all.
A fifth pump, the CellNovo looked like everything this geeky father could wish for his daughter but after contacting them it seems it’s not a likely option for the foreseeable future. Darn it!

The hospital’s view on pumps

The hospital are openly (currently) keener on two pumps, the Roche Accu-Chek Combo and the Medtronic Paradigm Veo.
They don’t hide this, they tell you up front and the reason is very simple: the more they know the pump the more chance there is of offering telephone support from memory and the quicker any problem is resolved.
After a quick discussion though it was clear that whilst this is their preference it is not a restriction and they are more than happy for us to go with another pump, such as the Animas Vibe or Omnipod.
They do have an Omnipod user at the clinic but only one.
If we go for a Vibe we’ll be the first, but this isn’t something that bothers me, we can support the unit ourselves, it’s the basal/bolus rates that we need help with.

#DOC to the rescue for pump advice

Suddenly it dawned on me that there’s loads of pumpers out there already, many of whom I’m either following on Twitter or in many cases I’m following their parents, on Twitter that is, I’m not a stalker!
So to the DOC I turned and started gaining an insight into what questions I need to be asking or researching the answers to.
It seemed clear from the outset that seeing a pump or two would really help matters.

Time for our first real pump demo

I’m excited about tonight as after work Jane, Amy and I are meeting up with a couple of #DOC people who live locally, both of whom I’ve never met.
After one of them – @Ninjabetic1 – recently got a AccuChek Combo pump we chatted and I asked if a demo would be possible, after all only seeing a pump actually started to change Amy’s feelings towards them.
“Of course” she said, unsurprisingly.
After a while we realised that another local #DOC person had a Medtronic Paradigm and was very local. She also was more than happy to give us a demo.
So I’m excited to be seeing a couple of pumps but especially at meeting a couple of people I’ve conversed with over Twitter for quite some time.
The best bit is that we all get to eat cake, well how else can they demo the pump’s bolus feature? (It’s all in the name of science.)

Rung Four: 9:30am tomorrow

Tomorrow Amy and I step up to rung four: we’re off to the hospital for our pre-pump carbohydrate counting training session.
After talking with the diabetes specialist nurse it seems this will be a session very similar to the first with a mixture between people just about to start carb counting for the first time and two families (us included) who are going on a pump soon.

Rung Five: 1pm tomorrow

Things are really moving on quickly and after the training session tomorrow morning the other pre-pump family and us are returning to the clinic for an informal pump demo by the hospital’s Roche pump specialist.
Personally I hope that I know everything they’re going to tell us as it will prove that I’ve done my research right. But even if this is the case it will be nice to get the hospital’s angle on the pump.
I might even get to find out whether the Mexican-wave-bolus is an urban myth or not.

All demos done

We’re ending a very busy diabetes related week with a visit to JDRF’s Discovery Day in Bristol on Saturday. An event where the parents get to listen to talks whilst the kids get to visit the @Bristol science centre in the same building.
We weren’t due to go to Bristol, we’d booked for Dorset, but as soon as I realised a couple of other #DOC people were attending I wanted to go there instead to meet them.
Now, there’s so many #DOC people going that I’m more excited about meeting them than going to the JDRF day; I can’t even remember what the day is about anymore. Oops.
A bonus of this day out is that one of #DOC has an Animas Vibe and has kindly offered to give us a demo.
So within three days we’ll have had demos of every pump that we’re currently thinking about.
Then the real research can begin.

Getting an insulin pump – inspiration from Paul Weller

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Paul Weller's Heavy Soul album Paul Weller’s Heavy Soul album, not quite Stanley Road but excellent too

“I should have been there to inspire you”

I was playing a Paul Weller’s Heavy Soul album in the evening after Amy’s clinic in December 2012, the one where she fainted.
My favourite tune from that album came on and it made me think, take a listen whilst you read the rest of this article
httpv://www.youtube.com/watch?v=VWls8s-G8m8&list=ALBTKoXRg38BDyREOUtVcf5edcCo8stOXC&autoplay=1

Nice song, shame about the lyrics – well kind of

Mr Weller’s written a beautiful song there but actually the lyrics point towards someone who’s failed someone else at some point in their life. Someone who knows now, when it’s too late, that they should have put something in place to help someone else.
Jane and I aren’t perfect parents by any stretch and we will fail at some bits but we can’t afford for it to be Amy’s diabetes management; we won’t let that happen.

“I should have been there to inspire you…”

I love that line and when I hear it it makes me think, “yes, I too want to inspire”.
It struck me that we need to inspire Amy to create a positive attitude around diabetes and not a destructive one; an attitude which gets on and deals with what needs to be dealt with; an attitude which makes her want to take care of herself; an attitude which makes her want to stay fit; an attitude which keeps her from diabulimia through the next impressionable years.
More importantly I never want to have to say the words in the song when it was too late, when something bad had happened, because that something bad could well be life threatening or disabling.

“…not paint your world a cold, cold blue”

The aptness of the lyric was not lost on me.
Blue, being the colour of the international diabetes symbol.
Blue, being the colour associated with sadness/depression.

Starting with fitness

Trying to get or stay fit can be hard work; it’s always seemed too much like hard work for me, but I loved playing sports even if I wasn’t that good at them.
Amy’s not particularly sporty, she’s not a member of any clubs, but she loves trying new things and so it began. We stepped up visits to the Leisure Centre and I introduced Amy to the game of Squash, something I played every week back in my 20s (yes, yes, it was a long time ago!).
Amy loved/loves Squash and in the first few weeks we ended up playing it twice a week. We’ve missed a few weeks here and there, interspersing it with Badminton and generally having great fun doing it.
I should add that this has been made so much easier but our local leisure centre operator DC Leisure, whose off-peak price for a court when a child is playing is only £1.95 for 40 minutes, instead of £6.90. Well done DC Leisure, you’ve made it so much easier to teach my kid a sport and get them interested.

Starting with attitude

I wanted Amy to know she wasn’t alone, being a kid with type 1 diabetes. She already knew that Dad spent far too long on Twitter talking to adult people with type 1 diabetes and we’d taken part in #GBDOC’s first ever Kid Tweetchat, but honestly she’s too young for Twitter at the moment.
I’d read about the JDRF T1 Youth Ambassadors programme and got Amy to sign up, to become part of something, to join a collective that intends to help get the facts about diabetes right.
She needed no persuasion and signed up immediately.
More to follow on this further down the page.

Starting with fitness and attitude

At the December clinic our Endocrinologist/Doctor and I were discussing use of Twitter and the DOC when she said that she had heard a talk from an inspiring young type 1 runner from London who went by the name of, I stopped her and said “Gavin? Griffiths?”.
(Sorry Doc, oops, won’t do it again.)
She was clearly very impressed with Gavin’s attitude to diabetes and how he dealt with and managed it.
Gavin (@diathlete) and I have followed each other on Twitter for a while now and I was well aware of his amazing plans for running from John O’Groats to Land’s End during April and May 2013, in an challenge known as the GBR3030.
I approached Gavin and asked if would be okay if Amy and I cycle next to him for one of the 30 mile legs of his journey; he seemed pleased at the idea.
I brokered the idea with Amy who gave an immediate “yes”.
If one ounce of Gavin’s never-let-diabetes-stop-you attitude rubs off on Amy I’ll be a happy man.
We currently plan to cycle the Bodmin to St Agnes route on the 25th May, the penultimate day of Gavin’s challenge, with Amy raising money for DiabetesUK and JDRF.
To donate please use the main donation page for GBR3030.

Helping with education too

Amy’s already written a few very well received articles for this blog, so well received that her diagnosis article was the second most read page, only just behind my World Diabetes Day post.
I needed her to write the final article for our series about travelling in India with type 1 diabetes which she did, making her remember the things that she did were already amazing to some, making her realise she’s achieved things that some people will never achieve making her remember how diabetes did not control her on that trip.
That article quickly became the top article on the blog and I couldn’t be a prouder parent.
JDRF seem impressed with that article too and if all goes well it might feature in one of the next T1 Kids magazines.

What’s this got to do with getting an insulin pump?

Well, the final bit of the jigsaw for me was that I already knew that in general pumps are pretty good news.
I wanted Amy to know about them but this was going to be hard, although not quite as hard as I thought.
Hopefully you’ve already read the blog articles about the 15th March so you’ll know what progress was made during and after the clinic.
I truly believe that some of the stuff we’ve started this year has had a good effect on Amy’s attitude toward diabetes. Her interest in management has increased and her knowledge too.
Without all of this I don’t think she’d be on the waiting list for an insulin pump.

And finally, my New Year’s resolution

At a party on New Year’s Eve, midnight came and everyone hugged, chinked glasses and kissed. Friends wish each other good times, but Amy was nowhere in sight.
When she appeared we hugged, kissed and wished each other Happy New Year and she asked “Dad, what’s your New Year’s resolution?”
I decided not to tell her the only thing on my mind: “to inspire you with your diabetes management, to set you up for a healthy future, to get you a pump if you want one, all in 12 months.”
This may well be the first New Year’s resolution I’ve ever kept.

Thanks for reading.

Getting an insulin pump – requesting a pump

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Medtronic ParadigmA Medtronic Paradigm Veo wearer with pump and CGM

At Amy’s quarterly clinic on the 15th March 2013 she saw her first pump, within 28 hours she was on the waiting list. But let’s go back a stage or two first.

On a high

Amy’s decision that she wanted a pump left us very excited about the future prospects. It was almost like I’d booked flight tickets for a long-awaited holiday, or being told one my ex-pat friends is coming to stay. For us parents we’re thinking about the tighter control which will only help her long-term whilst Amy’s not so aware about the potential complications and thinking more about the short-term.
She’s not said it but knowing her she’s probably excited about having another gadget.

Strike whilst the iron is hot

At the end of the evening it suddenly struck me that there was no point in waiting around, I had the Doctor’s email address so why not contact her to tell her the exciting turn of events. It went like this:

Dear….
Thanks for today’s clinic, it went very well and was good to hear Amy wanting to ask questions…
So our amazing news is that Amy has said that she’d like to see if she’s allowed a pump, she actively wants one.

It then went on to explain how Amy had arrived at her decision: the pump demo; touching the cannula; understanding the pump basal; seeing the same meter she uses and hearing how it controls the pump.

So what do I need to do to start the ball rolling? Are we likely to get denied due to NICE guidelines or is there more leniency towards 12 year olds?

At 11:26pm I clicked Send.

Worried about the NICE guidelines

For those who don’t know NICE (National Institute for Health and Care Excellence) is the UK’s special health authority who produce the standards and guidance for the health trusts/authorities in the UK, such as our beloved NHS (National Health Service).
I’d recently read that NICE guidelines for insulin pumps change when a kid reaches 12; if I’d known this before I’d have started the talking to Amy a little earlier and attempted to get the request in whilst she was 11.
Here’s the two key salient bits of the guidelines, one of which is subjective, the other is objective:

Continuous subcutaneous insulin infusion or ‘insulin pump’ therapy is recommended as a possible treatment for adults and children 12 years and over with type 1 diabetes mellitus if:

– attempts to reach target haemoglobin A1c (HbA1c) levels with multiple daily injections result in the person having ‘disabling hypoglycaemia’, or
– HbA1c levels have remained high (8.5% or above) with multiple daily injections (including using long-acting insulin analogues if appropriate) despite the person and/or their carer carefully trying to manage their diabetes.

Amy’s hypos do ‘disable’ her for a while but I’ve read of many people who are far, far worse.
Amy’s hbA1c result on 15th March had come down by 0.3% to 8.0%; the quarter before it went up by 1% to 8.3%, the highest she’s ever been.
The more I read the more I convinced myself she wouldn’t be eligible, something I had previously warned both Jane and her about.

Sit back, relax and wait for the reply

I was up early the next day taking my Dad and Step-mum to see my brother for the weekend, repaying a little for all those years Dad chauffeured me around. My Dad has Type 2 Diabetes but his management of it is done by my Step-mum, who’s pretty clued up about type 2 and very interested in type 1. The journey takes around 90 minutes and we were talking about Amy/clinic/pumps for probably 89 of those. As grandparents they were elated at the prospect of the pump.
After lunch I checked my emails on my phone and was quite surprised to see an email which arrived at 1pm that day.
It went like this:

Thanks for your email. Amy will be eligible for pump therapy.

Wow, really, that just said ‘will be eligible’ didn’t it?

She would probably benefit from a meeting with the Roche pump rep first to look at the pump in more detail and to be certain that this is what she wants. If she is keen to pursue pump therapy I will then contact the commissioners to let them know for funding purposes…

We’d spoken about Roche purely as its pump meter is the same as Amy is used to. It’s by no means certain that she’ll get a Roche pump. More on that later.

We then organise a refresher session on COH [carbohydrate] counting with one of our dieticians and following this an appointment for pump start with one of our team…

Okay, so the Commissioners are just informed? It doesn’t sound like funding is going to be a problem. Yay!

We could probably look at starting pump therapy for her in June/July time.

Gulp! Really!?
The words ‘June/July’ suddenly made it seem very real.

From the moment we entered the clinic to the moment we received the email was about 28 hours, it had been a whirlwind, in a good way.

Getting an insulin pump – Amy’s epiphany

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Animas vibe insulin pumpsAnimas’s pumps come in many colours

At Amy’s last diabetes clinic appointment (15th March 2013) she went from never wanting a pump to wanting one immediately.
Here’s what changed her mind.

Seeing the pump – mind changer #1

Amy had never seen a pump, neither had we. No-one we’d met was on a pump, all the kids in her school with type 1 diabetes were on MDI (multiple daily injections) as were all the kids we’d met through the hospital.
The pump was so small, so much smaller than we’d thought, but the best part was that the one we were shown was the Accu-chek Combo which uses the same meter (Accu-chek Aviva Expert) that Amy already uses.
I saw the change in Amy’s expression as the questions started to build in her mind.
“So how do you tell it how much insulin to give?”
The DSN explained that the meter calculates the amount of insulin to give.
Yeah, yeah, we know that, we’ve been using it for a while.
“But how does the pump know?” Amy asked.
The DSN explained that after confirming the dose the meter tells the pump via a Bluetooth signal and nothing on the pump needs to be touched.
“Wow” said Amy.
“Bluetooth?” I beamed – once a geek always a geek.

Seeing the cannula – mind changer #2

The DSN asked Amy if she’d like to see the cannula, which luckily was a plastic one. She did, she was amazed, it was small, it was flexible, it was thin.
“You can touch the cannula if you like Amy” said the DSN.
She did. She didn’t faint. She smiled.
“Wow it’s flexible and so small”.
Then the questions started to flow and I knew she was won over to the idea of a pump. This for me was a small victory as now she’s seen a pump and knows about MDI she can make up her own mind whether she’d like to try and get one.

Happiness shared with the #DOC

After coming back from clinic I felt elated: Amy hadn’t fainted, she’d learned stuff about pumps and we could now start discussing the pro’s and con’s about pumps and MDI.
I couldn’t help but tweet about it:
Amy's hbA1c down 0.3 to 8.0. Better still, we had a pump demo/chat & she didn't keel over
Other parents of children with type 1 diabetes offered congratulations:
congratulations message from the #DOC

The quote which really helped – mind changer #3

I spent the next 30 minutes on Twitter chatting with other parents and type 1 adults who were already using an insulin pump.
Here’s one conversation between a pump user and a parent I had:Quote from pump user: infusion sets hurt no more than a needle
Amy was near me so I read out the quote about the infusion set to her and carried on tweeting – okay, I’m addicted, I know 🙂
It was 5:44pm.

50 minutes of brain whirring later

Amy went off, did some stuff, walked back into the room fifty minutes later and stunned me with something she said, which of course I told the #DOC straight away:

Getting an insulin pump – educating Amy

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Accu-chek Combo pumpAccu-chek’s Combo pump and meter

Pumps: are they any good?

Having been a member of the Twitter diabetes online community (#DOC) for several months now I’ve learned one key thing about pumps: they’re pretty good.
Quotes like “the pump gave me my life back” are commonplace and it’s a rare thing to find someone who started pumping and went back to MDI (multiple daily injections of slow-acting and fast-acting insulin).
So it leaves me with the feeling that a pump is a worthwhile thing.

It’s the child’s decision

To get one thing clear up front, I would never wish to impose an insulin pump on Amy.
She’s 12 years old now, she’s very logical, she can weigh up pros and cons, so she can choose when or if she wants to switch to an insulin pump.
But how would she know whether she feels a pump is for her until she knows the facts about pumps, its good points and its bad?

Sowing the seeds

For many months now I’ve been talking to Amy about pumps, from things I’ve learned from the many #DOC tweeps who are pumping their daily insulin. Giving her the odd quote here and there; showing her the odd picture or two; working into life events which would be easier or quicker if using a pump.
A good example of this is Amy’s lunchtime routine at school: currently she has to do a blood glucose test, enter the carbohydrates she’s about to eat, go into a room/cubicle, prepare her injection, remove the necessary clothing, do the injection and finally it’s time to eat. With a pump she can cut out the requirement to move to another room, there’s no need to prepare the injection, no need to remove clothing, nor do an injection.
If she switched to an Accu-chek Combo pump once she’s entered the carbs into the meter she’ll just need to click a couple of buttons and the insulin will be delivered.
More importantly this will give Amy her lunchtimes back and will mean that’s not missing out on the social side of school.

A quote I’ve always remembered, by bad_diabetic

Held back by fear

So Amy had already started to understand that a pump has many benefits and she wasn’t bothered about wearing the pump 24×7 but one thing however always held Amy back, the fear of needles.
To any people reading who (thank God) don’t have type 1 diabetes I’d just like to say that repeatedly having to stab yourself 10 times a day doesn’t remove your fear of needles.
Amy’s specific worry was about the cannula, not the cannula itself but that it would hurt if someone banged into her.

Asking questions at clinic and fainting – 28th December 2012

Two years after being diagnosed we were at Amy’s quarterly clinic and the Doctor turned to us and asked if we had any questions.
I said “Amy, ask the Doctor about that worry you had about pumps”.
She asked about the cannula and the Doctor said there were many types, some metal, others are like plastic. Amy seemed intrigued.
“Shall I go and get a pump” asked the Doctor as she walked out to get one.
Amy fainted.
After resting for a while we left the clinic and never mentioned anything about pumps for a few weeks.

A more successful question time – 15th March 2013

At the end of the next clinic, after everything had been discussed and checked I hesitantly murmured “Amy, did you want to ask any questions about pumps?”.
She did, the same answer came back about the cannulas.
She didn’t faint.
She asked a few more questions and I discussed the different pumps with the Doctor and the DSN. Things were going well.
As we walked out of the room the DSN got a pump they had and came back to Amy and asked if she’d like to see it.
She said yes.
She didn’t faint. We seemed to be getting somewhere.