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.

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