Getting an insulin pump – inspiration from Paul Weller

“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

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

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

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

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.

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.