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Amy’s Chat Show at the National Paediatric Diabetes Team Meeting

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Lilly Diabetes ConferenceBack in April Dr Kar (@parthaskar) from the neighbouring QA hospital asked if Amy would be up for helping him out at a conference he was going to, the National Paediatric Diabetes Team Meeting hosted by Lilly in Birmingham. I guessed she wouldn’t, it’s not her thing, but I asked and she said ‘Yes’, her thoughts of helping Partha outweighing her fear of public speaking.

Part of the excitement was getting chauffeured to Birmingham in a shiny Mercedes but he was due at 11:30am and should have been here 15 minutes ago. Our house is notoriously hard to find and it turns out he didn’t have my mobile number. Finally I found him by walking around the area and we were off. I quick call to Nicki at Lilly and we found out Amy was on at 14:45, our ETA 14:30, perfect. That was until the roadblock north of Oxford which saw us divert towards London. ETA 14:50, not so perfect. Nicki said don’t worry though.

Rushing into the hotel Nicki met us and Amy got miked up, alongside 19 year old Rebecca who goes to QA, but where was Partha: stuck at Oxford. The chair, Dr Fiona Campbell, padded out for a bit but it was clear Partha wasn’t going to get here in time and the show must go on. Easy for adults to adapt to but not so easy for a 13 year old with a fear of public speaking. Fiona took control and Amy and Rebecca took to the stage.

The idea of the slot was to be a chat show, with Partha calmly asking Amy and Rebecca questions about their care, what they like, what they don’t and what would be the ideal service for them. Amy knew these questions and we discussed in the car how she’d like to respond, trying to make the experience as easy for her as possible. Trouble is Fiona didn’t know these questions, nor the interviewees, but I must say that she winged it incredibly well.

Amy looked nervous on the sofa sat next to Rebecca but then I saw she was also sat next to Alex Silverstein, someone whom I follow on Twitter and we’re friends on Facebook but our paths had never yet crossed. I felt better, Alex would take care of her I thought, although of course he didn’t know it was Amy sat next to him.

With the first question asked Rebecca gave a great long answer, before Fiona asked Amy who then got a bit tongue tied. More and more questions asked and Amy opened up giving great answers with the information she knew about. She was asked about talking to the GP about diabetes and said she never had and wouldn’t as she’d talk to her diabetes team. Fiona asked why Amy wouldn’t think about going to the GP and Amy answered exactly the same way I would: if it’s diabetes related we’ll go to the people who are the specialists.

Questions were asked about Skype consultations, preferred types of wards for any hospital admissions (general young persons’ ward or specialist diabetes) and whether they’d prefer letters being addressed to them or their parents. Letters? No thanks, these are young people, they want emails, or (as suggested by Fiona) text messages. They were asked if they ever saw a post-clinic letter, they hadn’t. I felt like stepping in and saying that yes we get a letter, two months after clinic, a letter which informs us of our insulin-pump-wearing child’s basal-bolus units and ratios but nothing about her pump’s basal profile or insulin:carb ratios. That letter goes straight in the bin.

With the show over Amy’s first DSN Debbie came over to see us. She had no clue we’d be there and took a while to recognise it was Amy on stage, but she was so proud, remembering that 10 year old who she’d helped through her first injection. I was bowled over to see Debbie again and similarly to meet Alex after all these years. I shared text messages with DSN Sarah who works in Southampton but couldn’t see where she was in the room. One of our DSNs was at the conference but we never managed to see each other. But that wasn’t too much of a surprise in a room of 300 or so.

Post chat show and we shared some lunch with Partha – who arrived just as the session ended – and we discussed the event, how it went, questions that were asked. It was nice to talk about emerging technologies too, like the Abbott Flash Monitoring.

In the car Amy seemed disappointed, feeling she hadn’t done so well, remember getting tongue-tied on the first question, but she had done well and later I showed her some comments from people I’d never met before who saw this tweet:LillyConfTweet1TweetFrankie1

TweetHannah

If you’re wondering whether the chat show format worked…

TweetHannah2

More importantly it was seen as a success in two ways. Firstly Amy went in at 8.7mmol, an hour later she was 8.7mmol (although then she ate evil pizza!). Secondly, this…

TweetPartha

Lilly Diabetes Conference

#DBlogWeek 2014 Day 5 – Diabetes Life Hacks

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dblog week 2014Friday’s topic:Share the (non-medical) tips and tricks that help you in the day-to-day management of diabetes. Tell us everything from clothing modifications, serving size/carb counting tricks to the tried and true Dexcom-in-a-glass trick or the “secret” to turning on a Medtronic pump’s backlight when not on the home-screen. Please remember to give non-medical advice only!

Crikey, this is a difficult, ‘tips and tricks’ would imply we know what we’re doing! If only we had Dexcom with its own received we could have Dexcom-in-a-glass, sadly we don’t.

spibeltI suppose the purchase of a non-diabetes-related SPIbelt for Amy has worked well for carrying her insulin pump, whenever she hasn’t got a pocket or somewhere to clip it.
When going swimming straight after our second pump training session, which taught us about adjusting for exercise, we realised we had nowhere for her to clip her pump. A quick dash around the shops later the hurriedly-purchased girl’s waist-cinching belt worked a treat and looked pretty cool too.
Both these products go to prove that you don’t always need to purchase specially made/designed diabetes products to make life easier, there’s things available everywhere.

On certain items of clothing we’ve done a little snip of a seam or rear or inside of a pocket to enable the pump’s tube to be fed through, but everyone does this right?

There’s a hack I want to know about: for those pumping insulin how do you avoid those untanned circles where cannulas once sat when returning from a beach holiday? Do you revert to MDI? Do you change set every day? Or something else?

The best ‘hack’ I’ll save for last and I’d like to thank UnderstudyPancreas‘s Annie for what I believe to have initiated a major change in Amy’s life with diabetes. Let me explain: Amy disliked going to clinic appointments, not because of the appointment itself which was always fine, but because we tried to keep her out of school for the minimum time. That meant picking her up from school with just enough time to rush to the hospital, park, run up the stairs, book in, do the clinic and reverse the steps all the way back to school. I heard that Annie’s daughter’s clinic were a lot more relaxed so on the next clinic we changed our ways. Now Amy has the whole day of school, she wakes up later than normal, has a leisurely breakfast, we drive to the park&ride with ample time to get to the hospital and book into the clinic, we spend as long at the clinic as we need and then head off into Winchester. There we’ll have a leisurely lunch, mooch around the shops and maybe at some point think about going home. Now before anyone jumps up and says it’s wrong to do this let me just share that at school she’s in the top 20 in her year of 300, something which has improved since treating her clinics as days off. Now couple that with Amy’s attitude towards clinic days: she loves them and looks forward to them*. Enough said I think.

 

 

 
* obviously she doesn’t like the annual check up where they extract what seems like gallons of blood from her. Who would?

dblog week 2014

#DBlogWeek 2014 Day 4 – Mantras and More

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dblog week 2014Thursday’s topic:Yesterday we opened up about how diabetes can bring us down. Today let’s share what gets us through a hard day. Or more specifically, a hard diabetes day. Is there something positive you tell yourself? Are there mantras that you fall back on to get you through? Is there something specific you do when your mood needs a boost? Maybe we’ve done that and we can help others do it too?

Amy on Indian trainFrom day one – okay it was probably more like day 101 – we tried to get Amy to be proud of her diabetes and not let it stop her achieving whatever she wanted. It’s a bold statement to make and one that on some days seems a mega-distance away but on the whole it’s achievable and spurs her and us on to do things that we probably wouldn’t have done if she’d never been diagnosed. It was around day 101 that we started planning our month long backpacking trip to India, something which made us very nervous – because of Diabetes, not India – but something which made us feel much stronger upon our return. Whenever I see photos of that trip it reminds me what a leap of faith it was, how we dealt with it and the sense of achievement we got from it. On top of that it was a bloody great holiday.

Us and Gav at end of GBR3030On Saturday at a JDRF Discovery Day in Reading there was a talk by Gavin Griffiths (aka ‘Diathlete’) who runs ultra-marathons without letting Type 1 Diabetes stop him. He started by asking the audience whether they saw Type 1 as a good thing. No-one held up their hand, although I raised mine halfway for a second before putting it down. Of course I couldn’t feel that it’s totally a good thing, to see what Amy has to go through, but I truly believe we’re all better people for it. Gavin has showed that with the right preparation and training it’s possible for someone with Type 1 to running the length of Great Britain (900 miles!).

Pretty in pinkTaking part in Gav’s GBR30/30 challenge made Amy even more determined to kick diabetes’ arse and it increased her advocacy for Diabetes. I see this in effect whenever we go to a diabetes event and someone sees her pump, which happened like clockwork at the JDRF event last Saturday. Amy had 6 or 7 adults and children all listening to every word she said as she described how having the pump has made life so much better for her and why it’s so ‘awesome’.

So our mantras could be that ‘diabetes will not stop us’ and ‘we are stronger now than before’. Remembering the good things we’ve done certainly helps when feeling down a bit.

But those mantras are no good when you’ve just had enough.

Luckily last July we attended a great event named ‘Greater Minds Inspire‘, organised by Zoe and Hedgie Pricks Diabetes, which had many inspirational people with Type 1 each talking about their achievements. Every one of them was brilliant and Amy certainly started to see that she needn’t stop doing things because of having Type 1.

But it was a video from Joe Solowiejczyk which was shown at the event that I remember when things are getting a bit much I remind myself of what he said, especially about meltdowns (about 1 minute in).
httpv://www.youtube.com/watch?v=SzEuEl4GiuU

I really like the bit about planning to have a meltdown day, seems like a thing we should plan too. We let Amy have food-meltdown-days when she has whatever she wants and we deal with any glucose level issues later. She still carb counts during these days but with so many boluses and the stacking of insulin things inevitably go badly. But within 24 hours any ‘bad’ levels are forgotten and all she can remember is that she had a cracking food day.

dblog week 2014

#DBlogWeek 2014 Day 3 – What Gets Me Down

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dblog week 2014Wednesday’s topic:May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope?

I’m not so sure it gets me down but it’s incredibly hard seeing your child get upset, about anything, ever. Throw in Type 1 Diabetes into the mix along with teenage years, blood-glucose-level-challenging-growth-supports and the fast-forming schoolgirl cliques and it’s amazing that the dark days don’t occur more frequently.

copy of log book for 24th JuneThere’s no doubt that I find it difficult when occasionally it all becomes too much for Amy, those days when she’d rather just be someone with a fully functioning pancreas, those days when she doesn’t want to be different. I know she’s had too much when I just get ‘the look’ usually after I’ve asked her to try and fill out more details in her log book, which I use to check whether or not there’s a pattern and therefore her insulin pump’s basal needs adjusting. Just after I’ve got ‘the look’ I absolutely hate diabetes and wish it would bugger off for good. I normally don’t mention anything about diabetes for a good while afterwards.

But this isn’t what really gets me down about diabetes.

Some comments by a minority are annoying: the people who say those stupid things and suggest that cinnamon or okra will cure my daughter; the ones who say they couldn’t have diabetes as they hate needles; the ones that say (in front of my daughter) about someone they know of who lost an arm/leg due to diabetes. This always makes me laugh though:
httpv://www.youtube.com/watch?v=LFIVVHQod5o

 
But this isn’t what really gets me down about diabetes.

I find the attitudes of some others without diabetes annoys me too: those that “can’t cope” with their slightly runny nose; can’t go to work or school because they’ve got a bit of a cough; find the bad in anything that happens rather than the good. Come on people, take a look around you and see what my daughter and many of my friends have to go through each day. Walk a the day in their shoes then realise that they cope with far, far more than you and they go about it with a smile.

But this isn’t what really gets me down about diabetes.

No, what gets me down is when I’m reminded just how brittle life can be for those with Type 1 Diabetes and the recent tragic story of the death of 15 year old Nicole Wilson brings this to the forefront of my mind. I heard about it through the news of #SingForNicole going viral and I must applaud Liam Payne for his tweet about Nicole, that’s a nice touch.
I’ve known about ‘dead-in-bed syndrome‘ for a while now but some reason I’d always associated it with hypos following a night out drinking, so when a 15 year old died I was shocked. It’s the sudden realisation that all I thought I knew was wrong and my child could be taken from me at any time.
Any time.
Honestly I don’t think I’ve slept soundly this last week.

dblog week 2014

#DBlogWeek 2014 Day 2 – Poetry Tuesday: A Childhood All Gone

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dblog week 2014Tuesday’s topic: This year, Diabetes Blog Week and TuDiabetes are teaming up to bring out the poet in you! Write a poem, rhyme, ballad, haiku, or any other form of poetry about diabetes.

So here’s my entry, the first poem I guess I’ve written since my school days. Hope it’s okay.

A childhood all gone: a true story of Amy’s diagnosis and where we are now

 
Well she seemed very nervous perched there on the desk,
Softly saying some words which caused us distress.
A quivering voice made me see from the start,
These familiar words still broke the nurse’s heart.

My salt covered cheeks saw confusion elsewhere,
On the face of a girl who awoke free of care.
Nurses make you better knew the 10 year old girl,
But not what the next few minutes would unfurl.

“Will I die” asked the girl, of the nurse, sat in front,
Whilst the family’s throats all swallowed a lump.
“You’ll need to take insulin to make you feel right.”
“Just the once? No? What? For the rest of my life?!”

With the first meal arriving when six struck the clock,
“Who would you like to give the first shot?”.
The needle-phobic young girl said without any strife,
“I might as well start if I’ve got this for life”.

With injection two done she tried to sleep tight,
On pillows with tear stains she awoke feeling bright.
The nurses so calming got us through the day,
But with arms full of D kit we wanted away.

We couldn’t go yet though as we hadn’t been told,
How to give Glucagon if she’s ever out cold.
The training was nearby but well out of sight,
But that curtain wasn’t as soundproof as the girl would have liked!

The next few weeks all seemed quite fraught,
Trying to remember everything we’d been taught,
Of injections and testing at least four times a day,
How we wish we could take our girl’s pain away.

It all seemed too much, just how did we cope?
With support from our nurses and minds full of hope.
But we felt quite alone, no-one quite knew,
Just how much we had to prepare, carry and do.

We were eighteen months in before I discovered my rock,
In the PWD* who are known as the #DOC*.
They teach me so much and in so many ways,
And continually help to brighten my days.

Three years now have past and how times have changed,
We’re stronger and confidence runs through our veins.
The little young girl with her childhood all gone*,
Would turn out to be so incredibly strong.

Amy and Kev

 
* PWD is people with diabetes
* DOC is the Diabetes Online Community, found 24 hours a day especially on Twitter
* So her childhood’s not all gone as such but she’s been launched into a world of responsibility and worry way ahead of her years.

dblog week 2014

#DBlogWeek 2014 Day 1 – Change the world

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dblog week 2014Monday’s topic:Let’s kick off Diabetes Blog Week by talking about the diabetes causes and issues that really get us fired up.

One of the (many) things that gets me fired up is the headline ‘diabetes is going to bankrupt the NHS’ that you see splattered in news stories occasionally. Articles appear in many online media article, like The Guardian, Sky, The Express and The Daily Mail. At least the NHS filled us in on the stats.

As well as the stories we hear that the people with the purse strings want to privatise elements of the NHS to farm off their ‘problem’. Yet at the same time some of the advice or practises seem to either waste money of give advice which is contrary to current thinking.

 
Without the NHS I see that our family could be missing one rather special thing, Amy.

My ‘change the world’ blog is more about changing the minds of those in Government and my words to them are simple:
Back off.
Change your plans.
Do you realise what an asset you have, the envy of a world which looks at the NHS for the care that it gives, not the money that it costs?

Rather than stop there I’ve got some ideas on how you can change things, although nothing below is diabetes related. As a caveat I have absolutely no medical training, so the following might just be stupid pipe-dreams born from reading and misunderstanding things far more complicated than I realise.

  • Change your focus on Cholesterol and get rid of the Eat-Ill plate – ok it’s the Eat-Well plate really – and prescribe some decent modern up-to-date advice, to adults, to parents but most of all to kids. You’ve got fantastic support from the likes of Zoe Harcombe (@zoeharcombe), so use it and rid Britain of this metabolic disease. Less obese people means less money you’ll have to spend on medication.
  • Only prescribe Statins to those that actually need them. The NHS already knows it’s over prescribing statins. You’ve got fantastic support from the likes of Dr Asseem Malhotra (@DrAseemMalhotra), so use it and save some of your budget.
  • Make sure that nothing can be prescribed on the basis of a single ‘high cholesterol’ figure which isn’t broken down. I’m happy to have high cholesterol if it’s all HDL or the ‘good’ LDL. This one will of course help the one above.
  • Come to think of it if the EatWell (*ahem*) Plate was changed and favoured less carbohydrate wouldn’t that reduce your bills for Metformin and Insulin? Remind me how much that costs you again.
  • Surely millions could be saved by giving easy and cheap access to sport and leisure. There’s thousands of homes soon to be built near where I live and work but I don’t see cycle lanes high on the agenda but they could be and it could all be paid for by the developers, not you, just make them do it. There will be lots of parking no doubt for fuel guzzling cars. Tell me, in the long term will you ‘gain’ more money from cars or making people healthier?
  • You know that all types of Diabetes are growing, so how come you are investing less than many countries? JDRF’s CountMeIn campaign has hopefully shown the Government how low our research grant is compared to other countries. You have numerous MPs in the likes of George Howarth, Caroline Noakes and Jamie Reed who could tell you lots more. So, up the research grant, help find a cure and/or prevention and help eradicate diabetes full-stop.

    •  

    dblog week 2014

Type 1 diabetes and young people – Rt Hon George Howarth, MP

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Parliament_at_Sunset

I’ve just finished listening to (a lot of) Rt Hon George Howarth MP’s parliamentary session entitled Type 1 Diabetes and Young People. It was a breath of fresh air to listen in the public eye who ‘got it’, who explained everything correctly, who wanted more support for people with Type 1 Diabetes.

Here’s a link to a stream of the debate: Type 1 Diabetes and Young People.

Mr Howarth’s own knowledge of Type 1 Diabetes is for me a sad and alarming story. As a parent of teenager with Type 1 Diabetes I worry enormously about stories like that of his daughter. Clearly if I ever meet Mr Howarth we’ll get along quite well.

So it was a first for me, listening to some ‘boring’ (perceived, not actually what I felt whilst listening) speech and actually understanding it, agreeing with it and at the end wanting to applaud Mr Howarth for holding this session. It was great to hear him praise Zoe Scott’s Hedgie Pricks Diabetes and Diabetes with Eating Disorders amongst other organisations and charities. Diabetes UK’s and JDRF’s programmes and initiatives were covered well.

What amazed me the most was the knowledge of, and some of the issues raised by, other MPs who (I guess) have little exposure or knowledge of Type 1 Diabetes. One MP raised that education needs to be given to those with Type 1 to help them avoid diabetoketoacidosis (DKA) due to Diabulimia. Another MP raised the issue about schools not supporting children with Type 1 and those that cannot inject their own insulin.

Between them they covered many things, such as the benefit for some in using insulin pumps; the Artificial Pancreas project funded by JDRF; about transition from paediatrics to adult care based on clinicial need rather than age; support and training for psychological issues; about the DWP and issues with awards of Disability Living Allowance.

This was all great to hear, that those with influence know a lot of what they are talking about and are behind many initiatives to bring Type 1 Diabetes more support than it currently gets.

Personally I’d like to thank everyone involved for taking part and especially Rt Hon George Howarth for this debate.

Diabetes Education Day with Seahawks

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seahawks logo
A while after Amy was diagnosed I started looking for support to meet up with other families in the same position as us, that’s when I first heard of Seahawks, the South-East Hampshire Families Group. It didn’t really occur to me to join in with something based in Portsmouth, that seemed a long way down the road – it’s 30 minutes! – as surely there would be something more local, there wasn’t.

So whizz forward to one month ago where we all attended a free cookie decorating session run by Seahawks. On walking through the door we immediately became part of a wider extended family, with many of the committee coming to introduce themselves and have a long chat. We all had a great time there, even if Sam did press-gang me into drying up for seemingly hours…I’m joking of course Sam. Amy immediately hit it off with a newly diagnosed girl, N, and we spoke with N’s parents for ages.

Fast-forward again to last Saturday and we attended their education day at the QA Hospital in Portsmouth. I didn’t really expect the event to be as big as it was but there must have been 200 people there. I already knew that the hospital backed Seahawks and everyone who attended the clinic there had been invited and it dawned on me Seahawks is one of a kind, certainly in this area.

With a room full of the key diabetes charities/companies like Bayer, Roche, Medtronic, JDRF and DiabetesUK ready to demo their wares, I spied Helen the rep from Roche/Accu-chek and I went over to get my first look at Roche’s new Aviva Insight insulin pump.

On a table full of leaflets I placed a good few copies of my ‘How social media helps us with Type 1 Diabetes’ leaflet, hoping it might help any parents currently feeling alone.

With Amy being entertained in the kids’ area the day began with an overview of type 1 diabetes by Dr Nalin Wickramasuriya. He spoke in length about the research currently being done all over the world and which one he thought might give the breakthrough. As ever this sort of info was fascinating, if not a little over the head of someone who never did Biology or Chemistry at school.

Next up came two sessions each with four options and which ones we attended:
  Session A
    1 Secondary carers – what you need to know
    2 Ups & Downs of Carb Counting– why there are glitches Kev & Amy
    3 Thoughts & Feelings
    4 Exercise Management/Having Fun Jane
  Session B
    1 Sick day Management DSN Parents
    2 Carbs – getting to grips with guestimates
    3 Thoughts & Feelings Jane
    4 Teenage Years Kev & Amy

All sessions we attended were great and gave us some ideas and knowledge for the future. I never knew for example that the more cooked a jacket potato was the quicker it would release the carbs inside it, especially if microwaved rather than baked. Over ripe bananas release glucose faster too, not that Amy would ever eat one of those.

Networking as these events is always good and it was a delight to see Sue from JDRF South and Daisy from Diabetes UK again. Bumping into N’s Dad again we arranged to meet again soon. At lunch sitting behind a family we overheard a conversation about pumps by a girl who’d never really seen one, so out whips Amy’s pumps followed by her take on wearing and using a pump 24/7, few minutes later the girl had decided she wanted one.

Sadly after lunch we had to fly (literally, blog coming soon) as Amy was doing indoor skydiving for JDRF in the afternoon, so we didn’t get to attend the rest of the day. But what a great event it was and I’d personally like to thank anyone who helped organise the event, you did brilliantly.

I’ve got a feeling we’ll be attending more Seahawks events in the future.

First look: Accu-chek Aviva Insight Pump

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AccuChekInsight1

At a recent diabetes education day I got the chance to have a look at the new Roche Accu-chek Aviva Insight Pump, nicely demoed by Helen our local Roche rep.

I was very interested to see this pump especially as it came a very close second to the Animas Vibe we selected for Amy last June. You may be interested in my write-up from our official demo of the Roche Accu-chek Combo Pump from May 2013.

I only had a few minutes to look/play with the pump and its meter so I’ll keep this brief.

Here’s a few key points about the new pump:
1. It’s still not officially waterproof although like its predecessor it’s IPx8 rated, as is same as the Animas Vibe which is regarded as waterproof by Animas. So it’s waterproof BUT if it gets damaged by water it’s not covered under warranty. This is (still) madness and something Roche need to sort out…in my opinion.
2. It has a new meter which has a more modern feel about it.
3. The pump appears to be much smaller and like its meter looks more modern than its predecessor.
4. The reservoir only holds 200 units of insulin. I was asked by a friend if this would be a problem for us and it wouldn’t: Amy changes her infusion set on her Animas every 3 days and puts about 160 units in.
5. There’s a new device to help fill the pump reservoir which takes some of the hassle out of the process. I liked this, a lot, which is why I took a little video…see below.
6. Soon after release you will be able to get pre-filled Novorapid cartridges, which appear to only hold 160u.
7. Both the meter and the pump look so much nicer than before.
8. If you want CGM, you’ll probably have to wait for the next pump model.
9. It is due for official release to the public in June/July.

Here’s the meter and pump:
AccuChekInsight2

Here’s the meter showing its nice colour screen:
AccuChekInsight3

Here’s the reservoir filling device:
AccuChekInsight4

Here’s the reservoir filling device in action:

httpv://youtu.be/Gu7AKyzOYmg

Further reading:
About the Insight pump
About the cartridge filling system
About the pre-filled cartridges

The wait is (almost) over – CGM, Animas, Dexcom and Kids

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pink-vibe-snigger
Earlier this week I blogged about waiting for Animas to get their licence to sell Dexcom G4 for use by kids and how the Diabetes Online Document (#DOC) rumour mill was suggesting an announcement would happen soon.

That announcement was rumoured to be tomorrow at a symposium held by Animas at the Diabetes UK Professional conference in Liverpool.

But it happened today. On Animas’s stall in the exhibition area sat an Animas toy kangaroo wearing a badge which said:

Animas Vibe & CGM system
NOW APPROVED
for children aged 2
years & older

One of my Twitter friends let me know the exciting and now official news:

Making the call to Animas

At lunch time I contacted Animas (0800 055 6606) to try and register for, or buy if possible, the newly approved CGM.
“Hello, I’d like to buy CGM for my daughter who uses an Animas Vibe, now that you’re officially licensed to sell them.” The lady on the other end of the phone was surprised I knew about it but was happy to talk with me.
I was informed the launch date is sometime in April, not April 1st, or the end of April, just at sometime.
I gave my details to be kept on file for them to inform me when they had any news.

And the price?

Animas has had a starter kit deal for some time, certainly from June last year. For £450 that deal gets you a transmitter and a box of 4 sensors.
So I asked if that deal would be still on come April; the conversation went something like this:
Me: “And will the £450 starter deal still be on?”
Animas: “I’m not sure, currently that deal ends on March 31st”.
Me: “Oh great. Well, I’m happy to pay now and just wait until you can send the bits to me.”
Animas: “I’m sorry, we’re not in a position to do that.”
Me: “Oh great.”

Patiently Waiting – CGM, Animas, Dexcom and Kids

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pink-vibe-snigger
In May 2013 we chose Animas for Amy’s pump for many reasons, one of which was that in the future we might like to get CGM (Continuous Glucose Monitoring) and Animas’s in-built CGM display unit would make using CGM cheaper – because we wouldn’t need to purchase Dexcom’s own display unit.

Continuous Glucose Monitoring? What’s that then?

A CGM system consists of a sensor which is worn on the body and has a small wire just under the skin which constantly senses the glucose in the interstitial fluid. This sensor connects to a transmitter which sends data to the receiver – in our case this will be the Animas Vibe insulin pump – which can show the user what their glucose level is like. It’s important to know that as it checks interstitial fluid and not blood that the glucose level can be up to 15 minutes behind the actual glucose level.
The Animas Vibe links up with Dexcom’s G4 system.

CGM, an expensive option

There’s no doubt about it CGM is expensive.
One sensor costs between £45 (Animas) and £62.50 (third party resellers).
Doesn’t sound too bad does it, but then again it’s only guaranteed to last one week. ONE WEEK!
If you used it full time, one sensor per week, plus needing two transmitters per year you’d be looking at paying over £3000 and that’s using the cheapest pricing available.
Luckily some manage to get their sensors to last a fair bit longer than that, bringing the cost down dramatically, but then again that’s going against the advice of Dexcom so I’m not suggesting anyone does it. You don’t have to use CGM full time, you can use it for as long as a sensor lasts, then take a break before put a new one on.

Does anyone really need CGM?

It’s a good question. Many health care professionals would say no, for many reasons. They’re definitely worried about the psychological effects of yet another thing to do for diabetes and I can understand this.
Twenty, possibly even 10 or 5, years ago people weren’t using CGM so why do we need it now?
I guess the truth is that we don’t need it now: by understanding how your body reacts to glucose, insulin, stresses and exercise (etc.) some people can really do well to avoid highs and lows, but doing this takes a lot of effort.
Some people will have a clinical need to use CGM; Amy isn’t one of them.
On the other hand CGM will tell you what’s going on with your glucose level throughout the day, alarming you when you go out of range. It tells you if you’re going up or down or not and it shows what’s been happening over the last so many hours. It effectively performs Basal Tests each and every night something which is done by many pump users or their parents.

Dexcom G4

If you’re in the UK you can purchase sensors, transmitters and the stand alone display unit for Dexcom G4 from third party resellers.
You can do this if you want to use it as an adult.
You can do this if you want to use it for your child, if they’re 2 years old or more.
You don’t even need to get a letter from your hospital to say you or your child has Type 1 Diabetes.

Animas and their Dexcom G4 licence…for adults

Animas are licensed to sell Dexcom sensors and transmitters to adults in the UK. You don’t even have to be an Animas pump user to be able to buy sensors from them.
So if you’re an adult with an Animas Vibe you can purchase Dexcom sensors/transmitters and have CGM displayed on your pump.

Animas and their Dexcom G4 licence…for kids (2-18 years)

We were told in April 2013 that by the time Amy got her pump one month later Animas would have their licence to sell Dexcom G4 sensors/transmitters for use by kids.
It’s never arrived.
We’ve been patiently waiting.
We’ve been getting frustrated at the waiting game.

Where’s the logic?

In the UK anyone can buy Dexcom G4 sensors/transmitters, whether it be from Animas or a third party reseller.
In the UK an adult can buy their Dexcom G4 sensors/transmitters direct from Animas.
In the UK a parent can buy Dexcom G4 sensors/transmitters for their child from a third party reseller.
In the UK a parent CANNOT buy these same things from Animas for their child.
Where’s the logic?
As a computer programmer this drives me mad.
Clearly there’s more to it that I don’t know about.

Finding an alternative method

I’ve been very keen to buy through Animas as their prices are so much lower and effectively it means you can get 11 sensors for the price of 8 bought from a third party reseller. As one sensor can last three or four weeks this means that you’d get at least two if not three months more of sensing by buying from Animas.
We’d been told that our hospital would not fund the CGM (fair enough, it’s expensive and there’s no clinical need) but they would help us talk with Animas. I don’t want to go into detail about this but it’s not happened, I’ve felt very unsupported in our quest and frankly it’s really annoyed me. Nine months after originally asking for support I’ve heard they’ve sent us a letter for us to send to Animas to hopefully prove their support for Amy’s case.
However maybe it’s all too late.

Is that a licence I can see in the distance?

The diabetes online community rumour mill has been working overtime recently.
There’s been talk of Animas holding a meeting/presentation/symposium at the Diabetes UK Professional Conference in Liverpool this week.
There’s been rumours that Animas may well be announcing that they’ve got their licence to sell Dexcom G4 products for kids (aged 2-18).
Recently a post on a Facebook group asked if anyone had heard anything.
They hadn’t.
It started a lot of posting activity, with people emailing or calling their Animas rep, or their Diabetes Specialist Nurse.
Whilst no Animas rep would confirm or deny anything one nurse may well have let the cat of the bag.
It seems quite likely that this week the announcement will be made that April will be the launch date.
But we’ve been here before with rumours of licences and dates so I’ll take this ‘news’ with a pinch of salt.

Of course I really hope this rumour is true.

TrialNet – an eagerly awaited result

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TrialNet logo

On December 3rd last year, Emilia and I signed up for TrialNet, giving a small blood sample at the Bournemouth Diabetes and Endocrine Centre. We were quite nervous about the day and even more nervous about the result which we wouldn’t find out for ages.
It could take up to three months, it took almost that.

The results arrived yesterday by letter.
Both of us are negative; that’s a good thing.

Affecting the whole family

Only yesterday did I understand the full impact of the anticipation of the result.
Jane text me to let me know the letters had arrived so I’d already figured out that we’d both be negative, otherwise we’d have had a phone call to discuss the results. Arriving home I opened the letters to check and took Emilia’s result to show her, but I bumped into Amy first. Amy read the letter and the look of relief of her face surprised me, she was so relieved that her sister was in the clear for at least a while longer. I don’t know why I never realised how much this would affect Amy, I wish I had as we could have discussed her worries.
Emilia whilst pleased with the result said that it just meant she had a year of not worrying, that she’d have to go again in a year. Clearly no celebration as such, just a mild relief, but we discussed that she doesn’t have to go every year, unless she chooses to. I think she will.

What’s next in the trial?

As part of the trial they’d like to retest Emilia in December, one year after her last test.
For me it’s all over as in December I’ll be too old to take any further part in the trial.

Want to find out more about TrialNet

If you want to find out more about TrialNet visit the UK web site here.

Promoting Diabetes UK’s #TalkToSomeone Peer Support Service

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Amy and Kev's photo for the Daily Echo's article about Peer Support

Recently I’ve become a Peer Support volunteer for Diabetes UK, answering a national phone line (0843 353 8600) for one evening a week as well as answering emails sent to my TalkToKev@diabetes.org.uk email address.

I joined at a time when a promotion campaign was set to start and I was asked to share my story and experience. So I put some thoughts on an email to Sylvia, Diabetes UK’s South East Regional Media Officer, who produced a media release – shown in full at the bottom of this post.

Yesterday the article appeared in my local newspaper, Southampton’s Daily Echo and has already generated a fair bit of interest judging on the number of hits this blog got yesterday.

It’s also been picked up by a couple of other places: Portsmouth Evening News, The Littlehampton Gazette, the West Sussex County Times and The Community Channel

Diabetes UK’s Media Release

For immediate release

Hampshire man lends a shoulder to support peers living with diabetes

A 44-year-old Eastleigh man is offering support to people living with diabetes, with the help of charity Diabetes UK.

Kevin Winchcombe does not have diabetes himself but has been sharing his first-hand experience of caring for a child with the condition through online blogs, twitter and Facebook as a way of letting people with diabetes know that there may be others going through similar situations.

He is now being supported by Diabetes UK to use his personal understanding of the condition in their ‘Talk to Someone with Diabetes’’ peer support project. It is a special phone line, staffed by Diabetes UK volunteers, which anyone with diabetes is welcome to call.

It is also available for relatives and carers of people with diabetes. The volunteers do not offer medical advice but crucially they can talk about the practical and emotional aspects of living with diabetes because they also live with or care for someone with the condition.

Kevin’s daughter Amy, 14, was diagnosed four years ago with Type 1 diabetes, a condition that means people cannot produce insulin. No one knows exactly what causes it, but it’s not to do with being overweight and it isn’t currently preventable.
It usually affects children or young adults, starting suddenly and getting worse quickly.

The charity has trained Kevin to use his diabetes knowledge to reach out to people who are looking for support networks. So now in conjunction with his own experience, he feels confident to give practical and emotional support to people living with the condition on the telephone and by email.

Kevin said: “I get queries on a variety of subjects from questions on carbohydrate counting to advice on coping with the impact of diagnosis. But often it’s just that people want to talk to someone who can understand what they are going through and can offer ways to help or view their diabetes related concerns from a personal perspective.”

“My involvement in the Peer Support scheme is extremely rewarding as the volunteering role gives me the opportunity to help people who actually have diabetes and advise others, like me, who have someone close to them with the condition. I hope my contribution can, in some way, help people manage their diabetes more effectively by providing, advice and support for a condition for which there is currently no known cure.”

Jill Steaton, Diabetes UK South East regional manager said: “Kevin is a fantastic advocate for a parent looking after a child who has diabetes. As it’s a serious lifelong condition, it can be difficult, but through this project Diabetes UK offers the chance to talk to someone who has been there, who knows first-hand what it’s like to live with diabetes. Feeling like no-one understands what you’re going through can be tough but sharing experiences with someone who knows is often half the battle to managing the condition.”

To contact Kevin directly visit the blog at http://circles-of-blue.winchcombe.org; email talktoKev@diabetes.org.uk; or on Twitter @oceantragic.

To view profiles of all of the volunteers and start a conversation by email at any time, go to www.diabetes.org.uk/peer-support. Or if you prefer to speak to someone directly you can call 0843 353 8600. The service is open Sunday to Friday, 6pm to 9pm.

Guest blog by Victoria Ruszala – Climbing new heights and making new mistakes

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Victoria at the peak - group shot
Victoria and her group at the summit of Mt Kinabalu

Preface by Kev: I truly believe travel broadens your mind but it’s easy to see why people with diabetes think twice. I know from our month long backpacking trip to India that everything is not plain sailing, but most issues can be overcome, or concerns minimised, with a bit of planning.
The backpacking trip however was not my original plan: we were due to go to Ladakh, crossing the Himalayas over two days, sleeping at altitude and risking acute mountain sickness (AMS). I got scared at trying to manage diabetes and AMS and immediately changed our plan to avoid the mountains, something I very much regret.
Victoria is the first person with type 1 diabetes I’ve communicated with who’s tackled altitude, so I was keen to hear her travel tales.
Anyway, get yourself a drink and sit back and read about Victoria’s amazing trip to Borneo, climbing Mt Kinabalu and how having Type 1 Diabetes did not stand in her way.

Climbing new heights and making new mistakes
by Victoria Ruszala

When Kevin asked me to write this blog post I thought – really? Why would anyone want to know about my holiday experiences? Then through lots of contacts on twitter I realised that what I do really is seen as exceptional by some people. It’s that that has me penning my random thoughts today, that and the idea that if people read this they might be convinced that the world is waiting for them….
I was diagnosed aged 9 in 1991. To save you all the maths I am now 32 years old. It may surprise you to realise that back then cartridges hadn’t even been invented – I used insulin syringes and vials for the first two years! However over time (thankfully) technology moved on and I was put on a basal bolus regime aged 11 (the youngest in my area at the time) and it stayed that way. I do now have a pump, but I have only had it for 3 years so I understand how difficult it can be to travel with different kinds of insulin regime.
My parents always took me on holiday every year to Spain or Portugal. They had the attitude that diabetes wasn’t a problem, just a challenge to overcome. This has stood me in good stead all my life – if I plan everything properly then nothing can stop me. However I never went further afield than Europe until I was 26 years old. This wasn’t fear – it was just a lack of interest! It wasn’t until I met my (now) husband at university that I met someone who convinced me to try a real adventure. Si had been travelling throughout his gap year and had continued during uni too. He was cool about my diabetes and because we met playing ice hockey (that’s a whole different story!) he didn’t see why I couldn’t do anything I set my mind to. It did however take him another 4 years to convince me to really go for it.
I was nervous about this and so set out some ground rules. Si is a real ‘turn up with just a ticket’ traveller and the very idea of this drove me crazy – how could I possibly plan meal times, insulin dose and treat hypos and hypers if we didn’t have an idea from one day to the next? So the compromise was that we would go somewhere ‘out there’ but as part of an organised group. We chose Borneo with Intrepid– mainly because I wanted to see orang-utans and because he loved the jungle and had never been to Asia. This was the best decision I could have made – it took the pressure off of me to ‘organise’ the trip and allowed me the space I needed to focus on insulin and food. It also meant that if I was concerned about my health at any point there was a contact who knew how to access healthcare. I would certainly recommend this approach if you have never been anywhere particularly extreme.

There was a particular part of this trip that really excited Simon – climbing Mt Kinabalu (4095m). One thing I forgot to tell you about Si – he’s an extremist when it comes to sport. I on the other hand am much happier with a glass of wine (sorry mum/dr) and a good book. At first Si said I shouldn’t do it. I think this was a cunning ploy on his part, as the first thing that happens when I’m told I can’t do something, is become determined to do it! So this is where the preparation part kicked in. I researched altitude and diabetes ….. and came up with nothing. Diddly. I couldn’t find any real information anywhere apart from RunSweet which gave profiles of people that had climbed mountains. This told me 2 things – it could definitely be done and it would be up to me to work out how my own body responded. I therefore got sneaky.
I am a clinical pharmacist – I work in a hospital and therefore have access to a number of healthcare professionals. They put me in touch with Professor Chris Byrne who was carrying out a trial on the effects of exercise in T1DM. I managed to convince this eminent professor that lending me his super expensive continuous glucose monitor and activity monitor equipment for my 5 week jaunt in Borneo was just what his trial needed! The CGM would give me the confidence for the mountain climb – I didn’t know what my sugars would do and this would tell me the trends rather than just single point readings, which would allow me to adjust my insulin and food safely.
The other bit of preparation I did was get equipped at climb-fit.com and get fit. So I went to the gym a few times and walked to work. Seriously that was my training (to be fair it was bloody hard work to get to the top of the mountain and if I had known I would probably have put a bit more effort in. Hindsight is a wonderful thing). I also spoke to the dietician and asked for advice about what food to take to help on the climb. They hadn’t really had any experience of this so together we decided that cereal bars would provide a good amount of energy and glucose (we were going to have meals on the mountain so wasn’t massively concerned – it was more hypoglycaemia that I was worried about). This advice has proved invaluable on all of my travels – they pack easily, they don’t overtreat the hypo and cause rebound hypers and its easy to get more of them, even in remote countries. I would advise anyone travelling to have a few to hand.
We went to Borneo and had a whale of a time. As usual (I knew from my previous experiences) the hot temperature and humidity caused my CBG to drop. So I reduced my Lantus by a few units. The Asian food was a nightmare to carb count – but once I worked out there was pretty much sugar in everything I just guestimated and usually it all worked out ok. I had a few hypos but I suspect they were more beer related than any real issues! And then the day of the climb loomed. The night before, I had taken the radical decision to only give myself half the usual amount of Lantus. I did this for 2 reasons – walking up a mountain was lots of exercise and therefore I wouldn’t need as much insulin right? And I was terrified of going hypo and falling off the mountain. I figured that if I got high I would just give myself extra Humalog. The morning dawned and we were given a cooked breakfast before we set off. I then made my second radical decision – I wouldn’t have any insulin for this meal. It was mainly fat rather than carbs (one hash brown and some baked beans) and my CBG was 10mmol/l. As I was sure the exercise would burn it all off, I figured it would be fine.

Victoria on the mountainVictoria on Mt Kinabalu

At first it was fine. My CGM showed my sugars were about 12 and I figured I was well away from any hypo danger. Then they started to go up. Then a bit more. Then a lot more. What I had failed to take into account was adrenaline. I know this now, but then – well this was me finding it out. Adrenaline will cause your sugars to rise rapidly. Your body is getting ready for fight or flight so your liver kicks out sugar for your muscles to use. But as a diabetic you don’t use it. So you just get higher. And higher. Combined with my genius plan of no insulin and halved basal, this resulted in a rapid rise to 27 mmol/l after 3 hours. I could see from the CGM that it was still trending up so I thought – no problem I’ll just have my breakfast insulin. Then it continued to rise to 29 mmol/l. ‘eek’ I thought and injected some more. The CGM stopped measuring at 35mmol/l. My CBG monitor had read Hi for an hour before that. I was feeling very odd and quite sick. I was clearly going into DKA at 2500m.
I then made yet more bad decisions. I actually didn’t tell anyone what was happening, I kept climbing higher and Si wasn’t with me as he had chosen to take a different trail with some of the others in the group (another genius plan that we haven’t repeated since). I gave myself a total of 54 units of insulin in a 4 hour period. Not much for some but I usually have 45 units in an entire day, including my basal. The CGM gave me the confidence to keep injecting – if it was still trending up I was still in trouble. I just kept injecting until the trend started to go down. It also helped that I was drinking huge amounts of water to combat altitude sickness and dehydration – so I never quite reached a point of collapse. I got away with it – by the time it got to lunch my sugars had fallen to 15mmol/l. I gave myself yet more insulin, had lunch and kept on climbing. My sugars stayed at 10ish for the rest of the climb to the ‘rest house’ at 3270m. I had dinner (proper insulin again, BG 15mmol/l!) and went to bed ready to begin the summit at 1am. I woke up 2 hours later with a hypo of 2.8mmol/l. This was my second learning point – exercise effects don’t stop when you do. When the activity monitor I was wearing for the trial was analysed back in the UK it actually showed that the effects lasted for 24 hours after I had stopped exercising. I never knew this and I’m many others don’t as well.
The summit was relatively uneventful – I made it to the top for sunrise. The CGM worked fine but my regular monitor (which I had to use to calibrate the CGM) went crazy. One minute it would read 26 the next 2mmol/l. I had to just trust the CGM which showed I was 9. I returned to the base camp, tired, exhilarated and full of new knowledge about my body. After that experience (and dealing with it alone) I actually grew in confidence – if I didn’t make rash decisions I understood my body well enough to try anything.
I have continued to travel the world, each time trying out a new challenge. Si and I now do it alone, although if I feel particularly nervous about some aspects we organise guided trips or groups to do it with. Here are my key learning points from my first climb at altitude:
• Altitude itself can force your CBG high or low – there is no way to predict
• Keep boluses roughly the same with about a 10% decrease – the amount your body needs for food stays roughly the same
• Test regularly – lots of factors are having an effect at the same time
• Have 2 different BG meters – none are tested at altitude and cold can affect reliability too
• Drink lots of water (helps AMS and DKA)
• Be brave with corrections – you may need more than usual.
• Exercise and altitude can have an effect for up to 24 hours so keep close eye on sugars for at least another day
• Be self-aware – you know how you react to things in normal life and it won’t change that much

Victoria and Si at the topVictoria and Si at the summit of Mt Kinabalu

A good year disappears, but another one’s coming

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At the start of 2013 I only had one New Year’s resolution, which revolved around getting more proactive managing Amy’s diabetes and handing over knowledge to her to let her decide where to go next. I blogged a bit about it here.

Honestly, I’m not sure whether this has been fully achieved but I do know that she and her diabetes knowledge, attitude and advocacy towards and for diabetes care has much improved. And realistically that’s all that matters.

We started off 2013 getting playing around with different sports and she’s pretty much found that she prefers Squash and Badminton and is pretty good at the latter. Cycling has featured a fair bit and she successfully cycled 27 miles with Gavin’s GBR30/30 challenge this year. The good that’s come out of this is that she’s proved herself to be better, stronger and more determined to achieve than many of her peers and I have no doubt that diabetes has raised this drive and determination.

Having attended so many diabetes related events Amy has gained a lovely set of friends in Chloe, Mimi, Max and Harry, friends I hope will stay in her life for a long time, such is the positive effect it’s had on her attitude to feeling ‘normal’. Her own friends are great but there’s nothing like being able to speak to other kids who just understand.

Getting the insulin pump has been one of this year’s big achievements, from fainting at the mere mention of cannulas at the start of the year, to getting a pump in June and on to giving cannula change demos in public to soon-to-be-pump-wearers she barely knew.

So 2014 is almost here.
I have no doubt it will match or exceed the good things which happened in 2013. I have no doubt about this because we have so many wonderful people in our lives, in our family, locally and especially within the Diabetes Online Community. Thank you to all of you.

I’ll leave you with a picture of Amy with her much-awaited new shirt from Diabetees.
amy jelly babies t-shirt