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Gatecrashing a CCG Patient Focus Group

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CCG

It all started by chance

On Tuesday 17th September at the end of my first ever Diabetes UK Winchester Support Group meeting I was chatting with Lucy & Daisy from Diabetes UK and a lady came to sit down next to me to chat – I wondered what I’d said wrong 🙂 That lady was Beverley Meeson and turns out she’s the Associate Director in Long Term Conditions at West Hampshire CCG. A prominent figure in an organisation we already owe a lot to and here she was asking little old me for information. We spoke about Amy’s new pump and she asked it was one of the new ones with integrated CGM (Continuous Glucose Monitoring). “Yes” I laughed “but it’s irrelevant as the CCG won’t pay for them.” I couldn’t help myself. Oops.

Seizing opportunities

True to my word I emailed Beverley the very next day with details of our journey to getting a pump and pointed her towards my many articles on the subject.
Beverley forwarded my details to Janet Hutchings who was organising a patient focus group for Type 1 Diabetes adult care, who emailed to see if I could come along to a meeting, which was happening the following Monday.
It was going to be a struggle to take the afternoon off at such short notice, was it really worth it and could I really be bothered?
A tweet out brought replies which convinced me to go
tweet1tweet_reply_pollytweet_reply_parthatweet_reply_sarah
That was it then, I was going, if my boss would agree.

The agenda

Janet had said that she wanted an informal meeting so that it would facilitate more open discussion but at the same time wanted to discuss certain topics, so set a rough agenda:
Welcome and introductions; How did you hear about this meeting?; Your current experiences of the service (positives/negatives); What would enable you to manage your diabetes better?; What would a quality service be for you?; How could we use innovation and technology to improve services?
Woah, did you see that last one? I’d best save my voice for that bit!

Introductions by everyone there

It was quite a small affair but I think it was better this way as it gave us all a chance to speak. If there’d been too many no one would have had a chance.
The meeting was chaired by Janet of the CCG.
Patient number one was Dave, who said he was confused whether he was Type 1 or Type 2 as people tell him different things. I took this to mean that he was an insulin-dependant Type 2 as Dave seems to only see his local GP and nurses. Or perhaps he’d been missed off the lists at the hospital?
Patient number two was Andrea, who has had Type 1 for 40 (I think) years and attends a mixture of two local hospitals, one of which is our one.
Patient number three was Martin, who was diagnosed in the 80s whilst in his late 20s. He attends a different hospital and some of the same places as Dave.
“Patient” number four was me, an interloper who’s got nothing to do with adult care for people with Type 1 Diabetes.

How did you hear about this meeting?

Janet had a big list of people she’d contacted to get the message out there about the meeting.
Not one of us had heard about it from the official channels and had generally found out by chance or coincidence, something Janet felt she needed to work on next time.

Your current experiences of the service (positives/negatives)

Once everyone had gone through their list of of positives and negatives of the current system one thing became clear: all our experiences are completely different and could be labelled as the usual ‘postcode lottery’. Given that we all fall under the same CCG this seems strange and hopefully something that can resolved with some guidance.
One person spoke about how they are forced to go and have an HbA1c done at their GP’s, one month after being done at the hospital. If they don’t go they don’t get their prescription filled and therefore don’t get any insulin or test strips. I suggested to the CCG that this was a pointless time-wasting inefficient box-ticking exercise, given that a GP is not likely to suggest altering ratios or start discussing Super Bolus-ing or any some such.
Interestingly for me, I didn’t think I’d have too much to say here but it seems paediatric experiences are similar to those for adults.

What would enable you to manage your diabetes better?

Test strips and knowledgeable GPs seemed to be the consensus.
With test strips the postcode-lottery rears its head again, or more to the point it’s the subjectiveness of the GP that drives the issue. Andrea pointed out the history of test strips being refused, something that Janet paid close attention to. Part of the problem seems GP’s confusion between the two main types of diabetes. Again clear guidance and education from the CCG to the GPs should save the day.
The other three key points were education, education and education but with it a big caveat: we all agreed that courses organised and run by the hospitals were needed and we spoke about the DAFNE style courses and how beneficial they’ve been to those who attend. The caveat (raised by us patients) was that patients should not sit back and expect to be told everything, that patients should be encouraged to be proactive in their condition. We felt that the hospitals could signpost new patients to other resources, something they don’t seem to readily do at the moment.
I spoke about instant HbA1c tests and how some people had to organise a blood test weeks before their appointment. Martin didn’t understand what I meant as he didn’t even know this was possible as it seems it’s only done like this in paediatrics. But why? There’s a machine sitting there in the hospital in Winchester, why not use it!? I suggested that this would make like easier for people and at not a huge cost. Janet wrote this down to investigate further.

What would a quality service be for you?

We spoke about the 15 Healthcare Essentials; about care in hospitals; about GP’s understanding of the different types of diabetes; about access to DSNs.
I – who came prepared 🙂 – spoke about Portsmouth CCG’s Super Six model and ask whether the CCG had looked into it – they had and will investigate further.
Andrea and I spoke about the patient focus innovation that was the Portsmouth “Sweetmeet”, something both Andrea and I attended.
(I started to wonder whether I should not mention Dr Kar’s name again in case it started to wind up the CCG 🙂 )
I spoke about transition from paediatrics to adult care and may have inadvertently mention Dr Kar’s name again, along with his article Changing services can actually be fun.

How could we use innovation and technology to improve services?

Janet asked about technology improvements and how they could help patients.
I cleared my throat.
This was my time to talk.
With reference back to our discussion earlier about patients taking partial responsibility for their own education I started talking about my recently created and released leaflet ‘How social media helps us with Type 1 Diabetes‘. Luckily I’d printed a few out which I handed out for people to read.
I spoke about virtual clinics for people who have trouble getting to the hospital, access to hospital information, standards of care, social media groups run by the hospitals and so on.
I may have gone over my allotted time 🙂 Oops!
On top of this I spoke about my use of Diasend, how the hospitals can access the information and how this could help patients.

And finally

I’m so glad I attended this meeting and would like to thank both Janet and Beverley for allowing me, a mere interloper, to attend.
I think it’s great the CCG are encouraging patient focus and collaboration and look forward to working with them in the future.
Thanks.

Diabetes UK’s Big Event 2013

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Diabetes UK Big Event

The Big Event

The Big Event lived up to its name with people coming from all over the UK to listen to topics about diabetes for all types (1, 2, etc.) in a single location.
It’s an awareness day very similar to the JDRF awareness days (1 and 2), the DRWF Wellness Day and Hedgie Pricks Diabetes awareness day I’ve been to recently.
I’m not sure of the exact count but I’d guess there were 500 or 600 people there so it’s a pretty large gathering.
One key element of the day for me was to meet some of the wonderful people that I “talk” to through Social Media on a daily basis and for me it was a highlight of my day.

First, the location

The event was in Hammersmith, London, certainly not too far from me therefore easy to get to. Last year’s event was in Warwick so it’s good to Diabetes UK moving the event around each year to enable access for others.
Some people though are happy to travel long distances for events like this and I met people who’d come from Nottingham, Derby, Wales and Northern Ireland. Fair play to them.

Registration and first meets

Registration was so simple and within seconds we were into the main hall where I immediately spotted a twitter colleague Dave, or was it Dave? People rarely look like their online presence do they! We’d all joked the other day on Twitter that Dave should bring his Yorkie down to give to whoever spotted him first. I tapped him on the shoulder with a “do you have my Yorkie?”. And so started my series of meetups.
Ten minutes later another tweep Rachel came to say hi proving once again that my ‘tweet a picture of today’s t-shirt’ worked. I proudly waved my Yorkie as Rachel was in on the joke too.
Then we bumped into friends from our clinic, Steve and Becky, who we’d arranged to meet there. This was already turning out to be a great day, I almost forgot we had talks to attend.

Talks, talks and more talks

Diabetes UK had gathered many talented speakers to discuss various different topics, all organised into tracks, one for Type 1, one for Type 2, one for parents of Type 1 kids and a generic one. You could pick and choose which ones to attend, there was no booking list, just turn up to the right room at the right time. We naturally migrated to the parents/schools sessions.

Session 1: What care to expect for your child

Steve, Becky, Jane and I took our places before I spotted Joe, Diabetes UK’s social media person at the event. We’d spoken online before so I went over for a quick chat. Yet another face to a name ticked off.
The talk was given by Libby Dowling, Clinical Advisor for Diabetes UK. She told us about the different policies and tariffs and just what care we should be expecting. The four of us are all at the same clinic and generally we’re pleased with the care we receive but listening others talk about their lack of care we felt quite privileged.
Two blonde haired women spoke about their recently diagnosed son, I knew one must be Karen, but which one? Finally I sussed which and tweeted her “I’m on your right, two rows back.” Next person to meet identified 🙂
The discussions around the room got quite heated as the lack of care provoked emotions.Session 1 tweet

Coffee time, some more people to meet

Back in the hall for more coffee and I spotted Simon – who has blogged about The Big Event too – and Teresa and went over for a chat and before I knew it session two was just about to start. It was hard to think we’d not actually met before as it seemed like a meeting between old friends. They introduced me briefly to Laura and Angie, two more from the #DOC.

Session 2: Pumps and continuous monitoring: basic introduction

Although Amy has been on a pump for a few months we still felt it was worth attending this session and went along with Steve & Becky whose child is getting a pump quite soon.
The talk was hosted by Melissa from INPUTdiabetes and Claire, a Diabetes Specialist Nurse and also co-founder of TeamBloodGlucose, an organisation I’ve been following for a while. Both have Type 1 Diabetes and are strong advocates for insulin pumps.
Questions were asked of the audience: who had a pump?; who had CGM?; who loved their pump?; who didn’t? It didn’t really surprise me that people loved their pumps (however on re-reading my tweet I’m surprised I didn’t spell ‘surprise’ correctly!).
Everyone loves their pump
It was great to hear Claire and Melissa speak, they were a great double act and everyone wanted Claire’s diabetes awareness dog who stayed near her the whole time. Claire spoke about CGM sensors and forced Melissa to parade uneasily around the audience.
Whilst talking about advantages and disadvantages I felt they omitted many of the advantages and bigged up some disadvantages, but I understood that they were probably not wanting to come across as saying pumping is the best solution – there’s a lot of people on daily injections who would get annoyed by that.
With the fab presentation over it was question time and some good questions were asked. Someone then started going on about her bad pump experiences and had a go for them bigging up insulin pumps. What a load of rubbish, the pump advantages had clearly been downplayed. I’m sad she had such bad experiences but that doesn’t happen to everyone and I’m sadder that her rant may put people off. Unfortunately it didn’t sound like she was going to stop going on so pretty much the whole audience left.

Amy’s Infusion Set Masterclass

After we’d eaten lunch Karen and her son introduced me to Shaun from Twitter who’d driven a long way for today’s event, yet another meet up done.
Then it was time for Amy for change her pump’s insulin/cannula/tube and it seemed to make a lot of sense for her to do it in front of Becky, Karen and their boys, both of which are getting a pump soon.
Amy took them through the whole process of drawing the insulin into the cartridge, removing bubbles, fitting the cannula, priming the tube and priming the cannula. I was proud of her for not only doing this in front of people but with the ease she did it under pressure. Karen suggested Amy does a YouTube video of it so perhaps that’s something for the future.

Session 3: Pumps and gadgets advanced

This session was also hosted by Claire and Melissa from session 2 and delved deeper into the world of pumps/CGM. Anyone without a pump would have struggled, in fact it’s fair to say that many of us in the room (Jane, me, Teresa, Dave) got a bit lost at points.
Carbohydrate counting can be tricky enough but now we were being introduced to Super Bolus and FPUs and multi wave bolusing. Eek!
Super Bolus
We learned that whilst normal bolusing is fine for normal GI (glycaemic index) foods there was a better method for high GI foods, i.e. those which would cause the blood glucose levels to spike very quickly.
Come in Super Bolus to save the day.
Roughly you ‘borrow’ some of the forthcoming x hours basal insulin units and add them to the normal food+correction bolus amount, at the same time you put on a temporary basal rate of 0% (or minus 100% depending on your pump) for the x hours.
Scott Hanselman’s “Hacking Diabetes” article has a section about Super Bolus which is worth reading.
There’s also Super Bolus information on DiabetesNet.com.
FPUs (Fat Protein Units)
This was the one that left many in the audience scratching their heads.
The idea is that extra insulin is needed for meals high in fat/protein.
Roughly you work out the calories from the meal, then work out the calories from fat & protein. With a bit of jiggery and pokery you end up with an amount of units of insulin to cope with the fat & protein, which in turns gives you the time you need to delivery that insulin over.
I’ve struggled to find the calculations themselves but DiabetesUK offered to send them to people who were at The Big Event so I hope to receive them soon. Whether or not we start to use them or not only time will tell.

Session 4: Coping with diabetes at school

Whilst I headed off to this session Jane went to hear the talk about emotional issues surrounding living with Type 1 Diabetes. I’ve heard from many that that session was one of these best of the day.
My session was hosted by Libby Dowling who was assisted by a parent of two children with Type 1. I’d met the parent, Fiona, before at the DRWF Wellness Day back in June. It struck me back then how well educated about diabetes she was, something living with 2 kids with D for many years makes you I guess.
Libby spoke about many things to do with children at school, about things Diabetes UK knew about and where they were seeking to go next.
Fiona told her story by reading an abridged version of her personal diary. It was quite shocking to hear the problems she had gone through and the prejudice and lack of equality her daughter received at school.
Parents spoke about the problems they received, the issues their schools had put them through as I sat in silence grateful for the wonderful school our kids attend. We’ve had no issues that haven’t been immediately rectified once I’d pointed out the errors of their ways.
Unbeknown to me, Baroness Barbara Young, Diabetes UK’s Chief Executive was sitting in the audience and stood up to discuss their plans, dealings with organisations and the way forward. I was impressed she took the time to attend a session and ask us what we all thought.
The key discussion that everyone agreed with was that someone at each school must be made accountable for any issues surrounding Diabetes (and other similar issues). Furthermore things were unlikely to improve until checks about a school’s equality/inclusion were properly included as part of their Ofsted report.

Summary

I thought I knew a lot about diabetes but going to an event like this proves I don’t.
I learn something at every event and that’s why I will continue to go to every one I can.
This event was great, its sessions, its presenters, its organisation and its opportunity for networking.
I haven’t really mentioned the childcare where people looked after the kids in a separate room whilst the adults were in sessions. Amy had a great time, playing all the games, drawing and playing with other kids, many of whom had Type 1 too. She’s made a new D friend of her own age and they’ve already started talking to each other online, which is great as we all know how good it is to feel the same as others.
The days after the event and we’re all still talking about how much we enjoyed the event so thank you Diabetes UK for organising it.

Best part of the day: the amazing Diabetes Awareness Dog

Claire’s dog Magic stayed by her side all day and whilst giving a talk during session 3 he started making a fuss over her. She left the room with Magic.
Melissa carried on the talk and it was a while until Claire returned to carry on with her side of the presentation.
At the end of session it was question time and the first question was “Claire, when you went out what level were you?”
Claire told us that Magic is trained to recognise a level of 4.5mmol or less.
She was 4.3mmol.
Wow.
Just wow.

First HbA1c since pump…the result

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hba1c machineAn HbA1c checking machine

The waiting is (almost) over

It’s time, time for Amy’s first proper clinic appointment since going on an insulin pump, the one where they’ll check her HbA1c.
I blogged yesterday about being anxious about this test, even though we all know it’s a flawed test right? 🙂
Today I don’t feel anxious at all, just excited as I’m more positive about what the pump’s done for Amy and some of the work we’ve put in.
Whatever the result I’m annoyed with myself a little as I know we could have worked harder at this but that’s easy to say now we’re 3 months in to using a pump; I wouldn’t have said it at the start (even though we’ve had few problems).

In Diasend Heaven

I’ve been uploading Amy’s pump/meter data on to Diasend regularly and have sent the login details to the clinic but will they have looked at our data? I very much doubt it.
Amy is the first child at our hospital on an Animas pump – our choice – and so the use of Diasend is new for our clinic. It’s okay though, I don’t mind, I’m happy to show them how it all works.
I’ve printed off the key reports and I hope the nurses and Doctors will be impressed about how easy they are to understand, certainly less complicated than I remember our old Accu-chek reports being.

It’s clinic time…

Here we go, it’s time to go in…wish us luck.

The result

7.4
That’s a drop of 0.8 since the last one… and we’ve not even really been trying.*
Get in.

* following some idiotic criticism when I’ve said this elsewhere I feel I should qualify the statement: in the first 3 months we’ve let Amy enjoy the pump and its benefits, such as bolusing for snacks, which in turn means she’s had lots of snacks, something she hadn’t done for 2.5 years. We’ve not been using combo/wave bolus, nor looking into super-bolusing etc.

First HbA1c since pump…anxiously waiting

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hba1c machineAn HbA1c checking machine

Anxiously waiting

Amy got her insulin pump on the 20th June and the very next day we were back in the hospital for her quarterly clinic appointment, which included the standard glycated haemaglobin check, or HbA1c check to you and me. Tomorrow is her next clinic appointment and the much awaited HbA1c check, which will reflect on her last three months.

HbA1c – a flawed test

There’s a standard joke within the diabetic online community (#DOC) that the HbA1c is a flawed test and that its result is pretty meaningless.
It’s possible to achieve a good HbA1c result when your blood sugars have been constantly low which in turn drastically affects your quality of life. Amy reports that hypos can take a long time to recover from and can ruin a many of the hours that follow. It’s pretty much the same thing for high blood glucose readings.
So it’s much better for quality of life to have blood glucose levels that don’t wildly fluctuate.
The HbA1c check doesn’t take account for fluctuations of BGs it merely tells you your average meaning that the same result can be achieved by two people, one who’s had many hypos and hypers and another whose levels haven’t fluctuated much and stayed within the desired range of 4-8mmol.
All this is best summed up by Dave Sowerby’s excellent article – HbA1c – A Good Measure?.
So, within the #DOC if anyone gets a ‘bad’ HbA1c many of us say ‘well, don’t worry, it’s a flawed test’.

HbA1c – who cares about flaws?
The other standard joke within the #DOC is that if anyone gets a ‘good’ result then we’re all so pleased for them, praising them on their good efforts.
If their result is 6.0 to 7.0 many say ‘wow, that’s brilliant, wish we could get close to that’ and ‘tell me how you do it’.
A result any lower than 6.0 often results in jokes being made…’you don’t really have diabetes do you!?’.
Rarely does anyone mention or ask about BG fluctuation, we’re just happy for those who have done well.

Previous results

When Amy was first diagnosed her HbA1c’s hovered around the 7.3-7.5 mark but recently they’ve been a lot higher.
We can explain this away as her having generally higher levels due to fears of hypos in the night, probably after reading articles in the media about people not waking up due to ‘dead in bed syndrome‘.
On 21st June 2013, at Amy’s last clinic her HbA1c was 8.2.
In March 2013 it was 8.0.
In December 2012 it was 8.3.

Why the anxiety?

We ultimately want Amy’s blood levels to be within range (4-8mmol) all the time with very little fluctuation, all because we went to minimise the chances of her getting complications later in life. So regardless of flawed test or not most people would prefer to see a lower HbA1c.
For me, I want to know that the insulin pump has made a difference. It’s already helping to minimise fluctuating BG levels and it’s helped loads with Amy’s quality of life and outlook on diabetes so (in theory) even if the HbA1c comes out the same or even slightly higher than before then we shouldn’t be worried.
I’d like a lower result too for the hospital’s sake, to know yet again that the pump has made a difference.

What do I think is going to happen?

I don’t know, really, I don’t.
It might go down: in the first 3 weeks we were sorting out Amy’s basal profile on the pump and she was having a lot of hypos, but that’s been mainly solved now and hypos are a lot fewer and far between.
It might go up: Amy’s pump has meant that she’s been snacking a lot, something she never did when injection as she would never take another injection, instead she’d avoid the snack. Amy knows that her snacking needs to reduce but at the moment it’s a rebound thing.
It might go down: Before the pump we never let Amy go to bed with a BG level any lower than the top of the range, meaning that she often went to bed at 10mmol. On the pump a 10mmol would be corrected at bed time, such is our confidence in the pump. In theory this means she runs a lot lower through the night, for many hours.
It might go up: she’s been on school holidays for the last 6 weeks and has been getting up quite late, often waking at 10mmol – which funnily seems really high nowadays.

So…I just can’t guess what the result will be.

…watching this space…

Amy’s school trip to Germany, 27 days after getting insulin pump

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27 days after getting her insulin pump Amy went on her first European school trip, a two night stay in Koln, Germany.

Too soon after getting the pump?

When our DSN (Diabetes Specialist Nurse) called to let us know Amy would get her pump on the 20th June I was elated, before seconds later I remembered about her school residential trip to Germany, which was only a few weeks after. The DSN didn’t seem too worried though as long there was a clear 3 weeks before the trip – there was. This meant that Amy had to go straight on insulin when getting the pump, rather than spend a week using saline which some clinics do to get people used to using their new pump. Our DSNs confidence made us confident.
Amy would need to do a set change during the trip so would 27 days be enough to get used to doing this? By herself? Without us?

Negative press = worrying parents. Would the school still let her go?

In the news recently there’d been so many instances of kids being refused residential trips at the last minute that I attended a Parents’ Clinic run by the school, deciding to tackling this straight on.
I went in armed with articles such as ‘Sheffield schoolgirl with diabetes barred from trip‘ and ‘Diabetic lad is barred from school trip of a lifetime‘.
Their initial reaction was amazement, that schools would refuse to take kids with diabetes. I took that as a good sign.
Their official response came back a couple of days later: they just wanted a letter from the DSN a few days before the trip to say that Amy was fit to travel. They also wanted us to come in and discuss care requirements with the person who the designated pastoral carer for the trip.

The School’s Pastoral Carer

We already had great respect for Mrs L – the person assigned as the trip’s pastoral carer – as she’d helped our eldest daughter with some issues on her trip three years ago, so we were glad to hear she was going on this trip.
Jane went to meet her the day before the trip with a list of things to do, which featured a key message: you should not need to do anything except make sure she’s okay; you don’t need to inject her; you don’t need to touch her pump.
I felt it was important – after the articles I’d seen elsewhere – that the school didn’t feel like it would be a chore taking Amy on a trip and I didn’t want Amy to think that she needed to rely on others to manage her diabetes, which in turn would hopefully give her confidence. In general this worked very well, a few issues aside.

Three weeks to get the basal profile sorted

The DSN wanted 3 weeks between getting the pump and the trip so that adjustments could be made to Amy’s basal profile to get it right.
In turned out that 3 weeks was enough to get the basal profile as close as possible and more importantly make us confident enough to make slight tweaks ourselves.

Wednesday 17th July, Day one

Waking up at Stupid O’Clock

The coach was leaving at 4am. which mean at 3:30am wake up call. It also meant there was no chance of doing a set change that early in the morning, so one was done the afternoon before, with another one to be done on either Thursday on Friday, by Amy.
We knew that Amy’s basal profile was pretty good so didn’t feel the need for her to test her blood glucose level at such an ungodly hour.
Arriving at the school, there was a mix of excitement from the kids and anxiousness from the parents. They felt like I did three years ago when I packed my eldest off on the same trip. I found it hard to appreciate their fears considering everything we were now worrying about: if it all went wrong it literally could be life or death.
Still, I made sure Amy had her mobile so she could text me her blood glucose check results and ask for advice if needed. It was a long wait.

Diabetes? Here? Nah!

A key thing any parent would want for their kid on a school trip is that diabetes doesn’t feature very highly so we told Amy to enjoy herself, get the most of the the trip but keep safe.
And she did.
Whilst she never texted me her results until a lot later in the day she clearly felt in control enough to not need to call me either, which was great, if not a little concerning for an incommunicado parent.
Later in the evening she sent her BG results through:

Amy's first day BG results

Thursday 18th July, Day two

Lindt and excercise

Today was the day which worried me most: it started off with a visit to the Lindt chocolate factory and also featured a lot of walking and a climb up Koln Cathedral’s 509 step spiral staircase.
We exchanged a few early morning texts one of which from Amy contained ‘is it okay if I have some chocolate at the Lindt factory?’. Bless her, as if I’d say no, knowing that she’d been looking forward to this specific visit for months. I looked up some nutritional values on Lindt’s informative web site and text Amy back carb values for stuff she likes. At Lindt she bolused three times in the space of the hour long visit, something she would never have done with injections so YAY for the pump, it meant she really enjoyed the visit.
The Koln Cathedral visit didn’t provide any problems either.

Infusion set change – without us

Amy had done all of the set changes herself, without us doing anything but with us watching and encouraging. Before the trip she wasn’t fazed about doing the set change and unsurprisingly she did it without issue, but under the close eye of the school’s Pastoral Carer.

Count the boluses

I’ve said before that Amy hated injections so wouldn’t often choose to snack anything over 15g carbs, and even then only once between meals. So the pump has given her the ability to do this but maybe, just maybe, 10 boluses in a day is a little too much. Well actually no, it isn’t, everyone else was snacking and now Amy’s pump meant she could too, without worrying about soaring or dropping levels.

Today’s blood glucose levels

7.8, 14.9, 4.6, 8.3, 4.1, 5.1, 3.5, 5.9.
We can discount the 14.9 pre-lunch test as it was 70 minutes after the first Lindt chocolate and 20 minutes after the last.
This means she only went a maximum of 0.5 out of range all day.
I’d call that winning.

Friday 19th July, Day three

A morning of stress induced highs

This morning she’d woken at 6.6mmol, another great result.
The trip had been going so well for Amy, she was having fun and her levels were pretty great all round. Diabetes itself wasn’t getting in her way at all.
That was until it was time to pack up and one of her room mates got all stroppy and pushed the other room mate into a wall, causing an untold amount of stress and emotion. I wasn’t surprised to hear about this event as I’ve never understood why Amy is friends with this girl, she’s always be horrid to Amy, so why share a room with her? The other girl has been one of Amy’s closest friends forever and one we very much trust to look out for Amy.
I was surprised how the stress affected Amy’s levels, shooting up to 15.5 which took a couple of corrections to shift over the next few hours.
By 1pm she was down to a respectable 5.4mmol.

Amy, do you really need Pizza for lunch?

The kids had to buy their own food on the last day, all opting for Pizza. I knew that a combo-bolus would be required but we don’t eat Pizza much at home and hadn’t experimented with combo -boluses for it. She wasn’t keen but I managed to convince Amy to do a four-hour bolus; I knew it needed to be longer but not when she’s by herself in Germany. We decided we’d run the risk of being higher later on…oh how that came back to bite us.

The case of the too-short-combo-bolus, the coach trip and the over-zealous teacher

Following Amy’s Pizza was the long coach journey back to England, sitting aimlessly on a coach for hours and hours. Combine this with the pizza and it’s easy to understand why Amy’s BG readings went up to 13.9.
What we didn’t expect though was the lovely Pastoral Carer going a bit overboard. She got Amy to test for ketones and even though it was very low she got her to test again minutes later. Then another blood test, then another, then another.
She did 9 blood glucose tests within 3 hours and a few ketones tests too!
Clearly this was down to us not clearly communicating what Amy needed to do if high; we’d concentrated on the lows, not the highs. We’d spoken about ketone testing but somewhere the hypo-15-minute-rule and ketone testing rule got mixed up. For the record, I’d rather had an over-zealous teacher than one who didn’t care or check on Amy.
It clearly threw Amy off balance and made her panic a little, which in turn probably raised her levels higher. Since, we’ve had a chat about why she went high which has renewed her confidence in her management of her diabetes.

In short…

Friendship incidents aside, pizza bolusing aside, everything went perfectly for Amy. Diabetes never got in her way, or stopped her from doing anything, she did everything her friends did.

Alton Towers tweetup – 29th June 2013

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Alton Towers

Day two at Alton Towers

Our first day at Alton Towers was a great success, albeit slightly damp from the rain. Today was going to be different on many ways: it was sunny; it was the weekend, so queues would be longer; we were meeting other people from the #DOC.
Us Winchcombes were in a bit of a rush to meet Derek’s family, forcing us to have a speedy breakfast all in a fluster and running out of the room to meet them in time.

Guest Services: to wait or not to wait

Pulling into the car park there were cars everywhere, far more than the day before…and to think we thought we were early. It took ages to get to the park entrance and by the time the we reached Guest Services there was a queue of 20 or 30 people there.
Although the Guest Services queue was long we knew that time spent here, getting the ‘special access’ pass for the people with diabetes, would be time well spent, minimising queueing time at all the rides.
Philippa and James met us in the queue and we chatted like we were old friends, not like people who had never met each other outside of Twitter before. Philippa also has Type 1 Diabetes and needed to get herself a ‘special access’ wristband.
Derek and I had been tweeting with Vanessa-Louise who was running behind time so we said we’d meet for lunch time, or sometime afterwards.

Straight to The Smiler

We headed straight to The Smiler, with the kids running, but kid-like James failed to appreciate an uneven path and tumbled head-over-heels denting more than just his pride. Philippa took him to get fixed up whilst we queued for The Smiler. It was only my family which went in, Derek’s stayed behind and unfortunately it took us ages to get through. However this “ages” was only 40 minutes and the real queue was already 2hrs long. Luckily our Smiler ride was brilliant and the ride worked well; more on this later.
By the time we met up with Derek’s family they’d managed to ride Obvlivion twice using Chloe’s special access pass.

Rides before lunch

Some of us went into Hex before we headed off to Thirteen, where the main queues were getting big already, but luckily our fast passes got us on in no time. We all loved this ride, it’s kinda cool.
It was great to chat with Philippa and James, so nice to put faces to names and they’re such a lovely couple.

Lunch time and the much-awaited BG test

We had lunch over in the Forbidden Valley (where Air and Nemesis are) with all 11 of us sat around a table.
Amy did her blood test and was 16mmol. SIXTEEN! This was her highest lunch time result on a pump and we had no idea why. We felt embarrassed as her new insulin pump was meant to stop things like this happening.
The mystery was solved a week later when I found out by looking at her pump’s data (on Diasend) that she never took any insulin to cover breakfast time.

Forbidden Valley

tweet, going on Air

Forbidden Valley has got to be one of the better areas of Alton Towers, with Nemesis and Air which we all really liked. After doing Air again we met up with Vanessa-Louise and partner who told us the The Smiler had got stuck, with 16 people stuck at the top of the vertical incline. Rumours were about that they were there for 30 minutes, luckily facing up not down, and I felt my desire to ride this coaster again disappear.
The Smiler - stuck - again

A rather wet Log Flume

Off to the Log Flume and the 11 of us were split across three ‘logs’ – which actually turned out to be shaped like baths, which was more apt than we knew at that point. The ride was really long and there were ample opportunities to get soaked, as Derek found out to his cost. Watch the video to see it, at about 2 minutes 56 seconds in.

A soaked Derek and me

httpv://www.youtube.com/watch?v=bOa4avl13iY

Sonic Spinball

The kids really wanted to go on Sonic Spinball which they’d not been on before so off went Chloe, Amy, Charlotte and Martin.
httpv://www.youtube.com/watch?v=FvYECfslVj4

The SmilerGate incident

Stuck on the Smiler

For the last ride we all did The Smiler, something I was a little worried about after it getting stuck during the day; but that couldn’t happen twice in a day right? Wrong!
Derek, Philippa and James went first; then Chloe, Clare, Charlotte and Martin; then my lot. The queue seemed to take forever but we knew that some people had been in the queue for 3 hours so we could hardly complain about 30-45 minutes.
Whilst waiting in the final boarding zone the ride broke down. It didn’t take Amy long to realise that Chloe was on the ride and broke into tears worried that she might be stuck up the top, without any dextrose or blood glucose meter. Eventually the ride got going again and Chloe etc returned looking not too shaken.
The ride was tested again and again and again before they were happy for people to go back on it.
Then it was our turn. It couldn’t break down a third time could it? Wrong!
Going up the first 45 degree incline and the ride stopped again.
This time Emilia got upset, worried that even if it got going again we’d get stuck at the 100% vertical lift.
After 10 minutes the ride got going and we were happy to get off.
Amy did a blood test, she’d shot up to 17mmol. No surprise there!

A brilliant couple of days

SmilerGate aside it had been a brilliant couple of days. We’d all had a lovely time and enjoyed our tweetup.
More over all the people with diabetes felt great about their special access passes and the benefits they brought.

Alton Towers tweetup – 28th June 2013

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Alton Towers

It’s teacher training day

For the first time in years both my kids were in the same school this year and we’d promised that we’d take them to Alton Towers on the first summer-ish teacher training day. So way back in November I booked up a hotel nearby for a couple of nights. I say hotel, it’s a Travelodge, which many of you will baulk at but it was clean, had a bed as was £20 per night for a family of four.

Talking about a tweetup

In December or January some #DOC (diabetes online community) people on Twitter were talking about meeting up somewhere like Alton Towers, perfect for me, as long as they wanted to meet up on the 28th or 29th June. I mentioned that I would already be there and a few people said they’d try to come too, with Derek and his family (Clare and Chloe) committing themselves and booking up the same hotel for the same two nights.
Many people started saying they would come and I got a little worried about how doing all the rollercoasters would work, but eventually our tweetup group dwindled to what became a perfect number for hanging out together. I would have preferred to have met more people but it could have meant we got to do a lot less rides.
In the end my family and Derek’s family were there for two days and we were joined by Philippa/James for the whole of Saturday, and met Vanessa-Louise and partner briefly on Saturday too. The next article talks about 29th June 2013 when Philippa and Vanessa-Louise were there too.

tweet, off to Alton Towers

Friday 28th June starts with a long drive

Both Derek and I had circa 3 hour drives to get to Alton Towers but we arrived within minutes of each other.
Derek’s daughter Chloe has Type 1 Diabetes as does my daughter Amy and they’d been texting each other during the journeys so they were very pleased to see each other again. Chloe’s cousins Charlotte and Martin had come along too to enjoy Alton Towers with us.
Once there we headed straight to Guest Services to arrange the ‘special access’ wristbands that Derek’s daughter Chloe and my daughter Amy were eligible for, both having type 1 diabetes. Here’s more information about Alton Towers’s special access wristbands and fast tracking rides.

tweet, at the front of the smiler

The Smiler: it’s time to be corrected

The Smiler is Alton Towers’s newest and biggest ride, with a world-first 14 inversions. It’s mad, it’s really made. Here’s a video of it.
We entered the disabled queue, which seemed odd, but as by that time the main queue was 120 minutes long we were happy to gain quick access to the ride, “just keep your head down, don’t look them in the eyes” 🙂
My family went first, Derek’s behind and after only 10 minutes or so we were waiting to board The Smiler.
Strictly speaking we were meant to be in the back row on the 4 row coaster as that’s where people with ‘special access’ wristbands are meant to sit, but I didn’t know it, so pleaded with the attendant to let us on the front. He agreed.
So our first ride of the day was Alton Towers’s biggest ride and we were at the front.
Wow.
OMG.
Awesome.

Rides, lunch, more rides

The special wristband enabled us to do so many rides: before lunch we’d managed to do The Smiler, Oblivion, Submission, Rita (twice) and some smaller rides, all within two hours which was the length of the normal queue for The Smiler. Amy needed to disconnect her pump for many of the rides, which is advised due to the G forces on the big rides and ridiculously strong magnets employed by them.

Baited breath for the lunchtime BG result

Lunchtime came and we waited with baited breath to see what Amy’s blood glucose level would: 6.5 phew!
Talking about BG levels Amy’s were good for the whole day: 5.0, 6.5, 7.2, 3.6, 13.7, 7.2. Only the 13.7 was massively out of range and that was because she’d had too big a hypo-cure 30 minutes before, easily done. I’d call those figures a win.

Ride after ride

After lunch we rode, Thirteen, Air (twice), Nemesis, Blade and finally the Congo River Rapids.
I think there was no doubt that The Smiler and Air were the two best loved rides for the group.
It was interesting for me as I’d done Air four years ago, paying to fast-pass it but still waiting 45 minutes to ride it at the front; I didn’t think much of it, but today I loved it. Top tip: it is not worth riding Air at the front as you’re looking down most of the time.
But that time we were already soaked from the light rain, it was a good job considering what happened next on the Congo River Rapids ride; take a look.
httpv://www.youtube.com/watch?v=Xf-y81Gz1oU

Diabetes and fast tracking rides at Alton Towers

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Alton Towers

Did you know…

…that someone with Type 1 Diabetes can avoid queueing for ages?
Until recently I didn’t but some people in the Twitter #DOC (diabetes online community) made me aware of it and (after having just returned from two days at the theme park) I’m really glad they did.

In general how does it work?

Once in the park you get a ‘special access’ wrist band which enables the person with Type 1 diabetes and three carers to use the disabled entrance to the ride, avoiding queueing in the normal ride queue.
In essence this means that queueing times is dramatically reduced, meaning you can get to go on more rides. You have to wait a certain amount of time between each ride so that you just can’t keep going on ride after ride.
Note that whilst it only allows 3 carers, on our first ride of The Smiler we had 9 of us ride with just two ‘special access’ passes. I guess some ride operators are lenient, others maybe not.

STOP PRESS – 22 July 2014: there’s quite a lot of reports within the last two weeks that only people with insulin pumps are getting a pass, which in itself seem ludicrous as they’ve got the ability to turn their basal down whilst queueing.

Getting over the guilt

These ‘special access’ passes aren’t only available to people with Type 1, they’re available to people who suffer many different issues.
At first the idea of using a pass like this seemed odd, like we were cheating the system, after all we don’t normally think of our Type 1 child as disabled.
For the first few rides I felt guilty, walking ably down the disabled ramp and getting on a ride in front of people who’d queued for ages.
But I thought about it and realised that for 2.5 years now we’ve ate, slept and breathed diabetes, worrying about hypos and hypers and hospital visits and preventing incredibly horrible future complications.
It’s about time then we got something out of this diabetes, and this ‘special access’ pass was it.
Guilt over.

Getting your wristband/card at Guest Services

Once you’ve bought your tickets and are within the park head straight to the Guest Services building, which is on the right just after you’ve gone down the steps.
In there let the staff view a letter from the hospital which mentions about the kid/adult having Type 1 Diabetes and they will put a ‘special access’ band around that person’s wrist. They will also give you a ride time card.
Note that one of our party didn’t have a letter but was wearing an insulin pump and she managed to get to a pass too.

Getting on a ride

Use the disable entrance. Do not go in at the Fastrack entrance, this is for people who’ve paid a premium to get on rides quickly and this entrance is not for ‘special access’ riders.
Each ride has a disabled entrance, which are often the same place riders exit from. Note that some rides has a ‘disabled’ entrance and a ‘wheelchair’ entrance so use the ‘disabled’ one if you can, or the ‘wheelchair’ one if not. Mostly though, they’re the same entrance and they’re usually easy to find. An exception to this though is Oblivion where you have to go in through the shop.
Once you reach the front of the disabled queue the ride operator will ask to see your ride time card and will write a new time in the next free box. Often this time will be one hour from the current time, although on several occasions it was only 30 minutes. After riding the current ride you will not be able to use this ‘special access’ method again until the card time has been reached.
The ride operator will get you on one of the next available rides.

Only one at a time

Presumably for safety reasons only one ‘special access’ riders is allowed on a ride at a time, so if you go with a group of you as we did, you will not be able to all ride at the same time.
This seemed like a small price to pay for the benefits you got.

Wait…and do it again

Once your ride card time has been reached you just go and do a different ride, or the same ride if you wish.
On Friday we managed to do The Smiler, Oblivion, Thirteen, Nemesis, Rita (twice), Air (twice), Blade, Submision, Congo River Rapids, Hex, Runaway Mine Train and some smaller stuff too. That’s a lot in one day and wouldn’t have been possible without using the ‘special access’ pass.

 
If you’re interested about whether this is available at other theme parks read this article: Fast tracking rides at theme parks for PWDs…and free tickets

UPDATE: 3rd July 2013
Amy’s pretty switched on and cleverly announced to her friends yesterday ‘if you’re going to a theme park soon you might want to take me’. What a good idea. 🙂

Getting an insulin pump – new gadget, SPIbelt

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Amy’s new Camoflage Pink SPIbelt

This pump is going to cost me a fortune

It’s probably my fault that this pump is going to cost me a small fortune: when discussing pumps before even Amy had decided I’d shown her a web site that many of you know – FunkyPumpers.com – which had pump belts for sale. Amy had spied the One Direction pump belt they sell with eagerness.

Being under prepared

Getting the pump so soon meant we weren’t organised enough to sort out a pump belt so last Thursday, when Amy got her pump, she had no choice but to wear a belt to clip the belt too as the pump didn’t fit in her shorts pocket.

So which belt is right then?

We looked at all the belts available on FunkyPumpers.com which was difficult as they have so many good ones. Amy liked the One Direction one but worried what would happen if she went off them.
We looked at cotton ones, plain ones, denim ones, on and on and on.
Then I saw that FunkyPumpers sold SPIbelts, a belt I’ve heard of and seen before. I knew that the principle is that they’re comfortable to wear and don’t move around much. Realising that they would fit an insulin pump inside was a breakthrough.
Unfortunately Amy wasn’t particularly sold on any of the designs FunkyPumpers sold so I headed off to Wiggle.co.uk, a cycling-centric site which is quite local to us.
After what seemed like and age we found the one for Sheldon (that’s what Amy’s pump is called), it was a pink camouflage one. It was ordered on Sunday and arrived today (Wednesday).
SPIbelts are available in waterproof

First impressions

As soon as Amy put it on she said how comfortable it was, she’s been wearing it ever since. The material feels cool and smooth so no chance of itching or getting too hot.
As with all pump belts you can wrap the excess tube up and stuff it inside the belt.
It looks cool so it will look good over clothes and feel comfortable underneath clothes.

Here it is



Getting an insulin pump – first few days’ blood glucose readings

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BG readings graph from 21st June

Testing…testing…one…two…twelve

Amy would normally test her blood sugars a minimum of four times a day, often 6 and sometimes 10. For the first 24 hours of having a pump she did a minimum of 12, one every two hours.
For those of you who don’t have diabetes – or friends with – let me just say that: yes, testing hurts a bit; no, it doesn’t get easier the more you do; no, you don’t get ‘used to it’; yes, it makes your fingers sore.

It’s not all about the data

Accumulating masses of data is a by product of having type 1 diabetes. It’s hard to ignore the numbers when you’ve been testing your blood sugar, counting the carbohydrates you’re consuming, giving doses of insulin, giving correction doses of insulin, feeding yourself glucose to raise your blood sugar.
Analysing this data can help you and your DSN realise what slight changes need to be made to help achieve seemingly impossible stable blood sugars between the levels of 4mmol and 8mmol.

Amy’s blood glucose data from before the pump

Below is a graph of Amy’s blood glucose from before the pump.
Whilst it look pretty darn complicated the key things to notice are:
– the the yellow bar shows our meters ideals level of between 5mmol and 8mmol. (Amy doesn’t like hypos hence the 5mmol rather the desired 4mmol.)
– the blue line which is an average of the readings, noting that many of the readings hit 15mmol and 20mmol.
– the average is consistently above the desired zone.
Amy's BG readings before the pump

Just for information, no analysis

I haven’t analysed the following data and I won’t be making any changes but it’s interesting to see how quickly the pump is helping with BG control. Before she went on the pump she was constantly quite high and to be honest we did nothing about it as we new the pump was coming along soon. As Amy hated injections so much we rarely “corrected” any high blood glucose readings, this being a reason we really wanted a pump.
Here then are the graphs for the different days

Thursday 20th June – pump day

Friday 21st June – a day of overeating

Saturday 22nd June – a relaxing morning, a busy afternoon/evening

Sunday 23rd June – …and relax

Monday 24th June – first day back at school

The full chart

Getting an insulin pump – setting up, log books and BG monitoring

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copy of log book for 23rd Junethe log book page for 23rd June

Setting the pump up

Going on a pump isn’t just a simple case of plug in and go, it involves a fair bit of work, but nothing insurmountable or problematic, just stuff which needs to be done.
Initially your DSN (diabetes specialist nurse) works out what they believe the best basal profile is for you, doing this by asking lots of questions about lifestyle & food and checking backing weeks of log book entries – that is if you’ve been good and filled in your log book, we hadn’t! So there’s my first tip: make sure you fill in your log book for a few weeks beforehand if you’re not doing it religiously already.
After deciding the profile our DSN read out the values to Amy – during our pump training day last Thursday – she input the values, which brings me nicely on to…

Does your DSN actually need to touch your pump? Ever?

I’d not really thought about this before but at the DRWF event on Saturday Lesley from INPUTDiabetes said something like “Once you’ve got your pump your DSN should never need to touch it, if they do you’ve not received enough training.”
It was a good point and on reflection neither our DSN nor our Animas pump rep has touched Amy’s pump, certainly not to input or change anything, and I’m pretty sure they’ve not touched it at all.
So that’s good then, we’ve been trained correctly.
I suppose it’s oh so easy to hand over your pump to the DSN and get them to change the settings but what do you do when you need to change anything in the future? Would you know how to do it?
In our case Amy is a whizz with things like this so she set up the pump, with me trying to look over her shoulder to make sure they settings were right.
So, for us, not only has the pump not really been touched by the DSN, nor the rep, nor the Doctor, it hasn’t really been touched much by us, the parents.

Filling in the Animas log book

As you’ve probably read I’ve been worried how much my hospital are ok with using Animas as we’re the first in paediatrics in the hospital to have an Animas pump. So it was nice to hear from the DSN who was inspecting the new log book that it was one of the best ones and she’d like us to use it, rather than continue with the Roche one we’d (rarely) been using up to now.
Each day takes up two facing sides, with the top page having columns for each hourly block and rows for readings/values: blood glucose; carb grams; BG bolus (correction doses); Carb Bolus; basal rate; basal rate change; temp basal rate; ketones; set change (tickable).
On the bottom page there’s spaces to write information about food and a big notes area to write notes and things like ‘had a very lazy day’.

copy of log book for 23rd JuneCopy of the log book from Sunday 23rd June 2013

 

A tiring first 48 hours

Our DSN had requested that we test Amy’s blood glucose everything two hours, put the entry into the pump and trust the pump’s suggestion. It seemed a strange request, of course we’d do that, but I guess that some people battle against it and then wonder why their levels are all over the place. I was grateful that it was only 48 hours as a twitter friend of mine, who’s son went on a pump a week ago, has been asked to do it for one week!
These tests were to happen every two hours for 48 hours, including throughout the night so Jane and I divided the shifts with me doing the 10pm, midnight and 6am shifts and Jane taking on the 2am and 4am. This minimised the tiredness levels for both of us, although not by much.
It didn’t seem too tiring initially although I got through most of Friday and Saturday relying on caffeine and much yawning. Luckily Amy managed to almost sleep through all 2am and 4am checks.
From midday Saturday, approximately 48 hours after going on the pump, Amy was taking part in a large choral concert so was without us for many hours. She coped well, still ecstatic about her pump.

Basal/pump reviews and calls from our DSN

Our DSN works Monday to Friday but called us on Saturday in her own time to check how things were going; they were going well.
She called again later that day and again on Sunday.
So far between us we’ve decided that no changes are required to the basal and that we should continue with the current settings.
We’ve got our advanced pump training tomorrow so there may be some changes made then.

Getting an insulin pump – a superb 24 hours

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Pretty in pinkAmy and her new insulin pump and her new DiabeTees iPump t-shirt

A busy (sinful) 24 hours

Since waking up yesterday morning, Jane, Amy and myself have had a great 24 hours, almost a day of celebration of the new pump, a day of treats and especially a day of saying ‘what the heck, just have it’. On reflection this may not have been the best policy on only day 2 of a pump, it just snowballed.
I’ll hold my hands up then and say that on the face of it today we’ve been pretty irresponsible, we’ve let our daughter got all out and eat want she wanted. I’ve made sure we ended in places where she’d say ‘ooh, can I have that?’ so we could let her.
It wasn’t meant to be like this.
A couple of weeks ago we chatted about the impending first 24 hours on the pump and said that we would be good, eating only normal food and stuff that we could easily calculate the accurate carb value for. This was especially to make the carbs/insulin matching accurate so that we knew that glucose fluctuations would be mainly down to Amy’s basal insulin, which the pump delivers every few minutes. This in turn would help our DSN (diabetes specialist nurse) make adjustments to Amy’s basal profile, something that is crucial to the pump being a success.

Early rush for clinic

Amy’s 3 monthly clinic appointment had been booked for yesterday since the last one in March, on the 15th.
That was the one where Amy first saw a pump and later had her epiphany moment and said “I want a pump”.
So our ‘time to pump’ was one clinic, or a little over 3 months. (15th March to June 20th). It could have been quicker if I hadn’t been researching pumps for so long.
Clinic was at 10am, we only just made it.
It was strange being back there the day after the time before, the only times this has happened before for Amy was when she was diagnosed and before that, when she was born. She didn’t remember the first time for some reason.
Whilst I have no experience of other clinics can I just say that I blinking love this one: everyone is part of one team, a team which encourages, helps and listens.

The dreaded hbA1c check/result

For those of you who don’t know the hbA1c is a blood check which in layman’s terms tells the Dr how ‘good’ you’ve been for the last 3 months. It’s a little more complicated than that, but that’s the gist. Many argue that hbA1c is not a good test as you can have a ‘good’ result whilst living a life of hypos and hypers, with blood sugars rollercoasting, whilst a ‘bad’ result could be achieved with very little fluctuation. Many, including me, would argue that the latter (‘bad’) is a better thing to strive for. Dave Sowerby’s article delves into the HbA1c check in more detail.
Amy was generally 7.3 but in December rocketed to 8.3, in March she was back down to 8.0.
I feared for today’s result as she’d been high on average for weeks. We’d done nothing about this as she was going on a pump and it seemed little point changing things about.
The result came in….
8.2
Phew! I was amazed it wasn’t a little higher.

First up: DSN

Our DSN and Dietician attended the first part, looking over the last 21 hours (since going live on pump) log book information. This felt strange, we were only talking about 21 hours, not the normal three months.
They were pleased with the progress made already, amazed at how well Amy looked and felt about the pump, applauded the BG values and corrective doses.
Whilst the DSN said not to bother two-hourly testing through last night, I suggested that we were happy to do it if it meant her basal might be easier to get right.
She agreed and said she’d give us a call – in her own time – sometime later this morning.

Second up: the Doctor

Some people dread the first few minutes of an appointment with their Endocrinologist, but not us, for one simple reason: she always starts with ‘how are you Amy’. She always talks direct to Amy, she leads with questions about her wellbeing and doesn’t lead with ‘your hbA1c result showed that…’.
I love this approach.
We spoke mainly about the pump, how it was going, what it felt like, did the cannula hurt and things like that.
I asked how she found the training day the day before, trying to elicit a response about the Animas pump. I wanted to try and see if there was any issue with us wanting the Animas Vibe and daring to challenge the de-facto standard issue of Medtronic or Roche.
“I like that pump, I think more people may get that one here. What were the reasons you really wanted it?”
This was excellent news, there was no problem about us wanting the Vibe and great news that the Doctor liked it. I went through the many, many reasons we chose Animas over the others.
We offered to come in to do demos for other parents/children who were looking at pumps.

Costa: an easy place for diabetics

It was 11:30am, Jane and I were knackered after a lack of sleep last night. I needed caffeine, so we hit Costa in the hospital grounds.
“Have what you like Amy”
“Really? O.M.G. I’m having that” as she pointed to the Mango and Passion Fruit Ice Cooler.
I should explain that normally Amy would just have water, it’s 0g carbs, or at best a Diet Coke, never something she’d need to bolus for as that would mean another injection. Now it doesn’t, just a couple of button clicks.
Amy at Costa
Jane asked how many carbs and the Barista asked where were sitting and that he’d be one minute.
He turned up with a huge book which he said listed absolutely everything they sold. And it did.
The drink was a massive 55g of carbohydrates, so Amy bolused 4.25 units of insulin for it. What was nice was that she didn’t do a blood test for it, just used the ‘ezBG’ feature to match the insulin to the carbs consumed.
She loved that drink, she loved the feeling of having things she’d denied herself for years.

Retail therapy

We spent the day with some retail therapy, visits to fast food places (which we never normally do) and even succumbed to buying a box of Krispy Kreme doughnuts for film-watching time later that evening.
Amy was ecstatic at the new world opening up to her.
We did have a discussion about everything returning to normal today.
Later that evening I reflected on the way forward:
tweetjabba

Two hourly testing results

We’ve got to test Amy’s blood glucose levels every two hours for the 48 hours after having pump. This is something everyone going on a pump seems to do, although for many they have to do it for a week.
Amy’s levels have been:
Time, BG mmols, correction dose
06:00, 3.6, 9g carbs (mis-calculated carbs for 3 dextro, thought it was 5g each, it’s only 3g! Discovered mistake 30 minutes later)
08:00, 5.7
09:00, 4.9
10:00, 5.9
11:00, didn’t test but had 55g smoothie drink, 4.25u insulin
12:00, we were travelling so we forgot/missed this check
13:00, 7.4, lunchtime, eating huge 105g carbs so had 8.05u insulin
14:30, 4.2, 9g carbs, Amy felt hypo so even though technically wasn’t she had 9g to make her feel better. It worked.
15:00, 3.6, 15g carbs, clearly 30 minutes she was dropping quickly
16:00, 6.5
18:00, 14.2, 2.55u insulin, clearly the 9g+15g Dextro tabs earlier had caught up with her
19:00, 11.7, dinner of 56g so took 6.03u insulin – 4.3u insulin for the food, 1.73u insulin for the correction to bring her levels into range
20:00, 6.8, 40g carbs & 3.05u insulin – post-dinner treat doughnut
22:00, 4.1, 24g carbs for a milkshake, no insulin suggested
00:00, 14.7, 2.35u insulin
02:00, 8.8
04:00, 9.1
06:00, 8.0

Considering what a ‘treat’ day it’s been those figures are amazing.
#Winning

Getting an insulin pump – through the first night

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Amy and her new pumpAmy and her new insulin pump and her new DiabeTees iPump t-shirt

Back at home and bouncing with joy

We arrived back from the hospital with pretty good glucose levels. It was about the same time Amy’s friends were leaving school.
She texted them “I’m home, come over and see my pump”.
10 minutes later several friends turned up and they stayed outside talking in the garden. 20 minutes after that and Amy’s gone hypo (2.6mmol) as they’ve been bouncing on the trampoline, a lot.
I remembered the conversation from earlier about testing out the temporary basal rate; what an ideal time that would have been, if only we’d thought about it.

First extra bolus at home

Amy had already done her first extra bolus at hospital for 3 chocolates, it had gone well. This was a big thing for Amy as she has missed out having snacks/treats for 2.5 years.
She’s always had the choice to have snacks when others are but if they’re more than 15g carbs then she should give some insulin for it. She hates injections with a passion and virtually always chose not to, thereby missing out on snacks. Only now have I realised how much stuff we’ve stopped doing because of this, such as going to the cinema and having a snack during the film. So looking forward to these things now.
Anyway, yesterday afternoon Amy wanted a snack and chose one of the iced buns we’d bought that day. Its 23g carbs would have needed a bolus so on MDI she wouldn’t have had it. Now though, there was nothing stopping her so she tested, bolused and ate. It actually took longer to eat the thing than prepare to eat it. That’s a big bonus.

Fast food

No, don’t panic, we didn’t hit the fast food restaurants last night, but we did have fast food…let me explain.
The normal meal time routine involves calling Amy 10 minutes before dinner is ready; getting her to do a BG test; calculating her carbs (with her) whilst serving up the food; eldest daughter goes and eats; we stay behind to do Amy’s injection; Amy finally gets to eat.
We’ve kind of got used to food starting to go cold, it almost seems normal.
Last night’s meal was different in that Amy carb counted and immediately bolused, in seconds.
The ritual of preparing the injection site, preparing the needle, hovering the needle over the site for what seems an eternity, doing the injection…these have gone, disappeared, hopefully forever.
Eating hot food just might catch on again.

Two hourly testing results

We’ve got to test Amy’s blood glucose levels every two hours for the next 48 hours at least. This is something everyone going on a pump seems to do, although for many they have to do it for a week.
Amy’s levels have been:
Time, BG mmols, correction dose
16:00, 2.6, 9g carbs – should have been 15g but we mis-calculated Dextro carbs
17:00, 5.2
18:00, 7.2
20:00, 3.1, 9g carbs
21:00, 5.2
22:00, 9.2, 0.3u insulin
00:00, 11.7, 1.55u insulin – we would never have done a correction like that before
02:00, 4.2, woohoo, that last correction worked
04:00, 4.7
06:00, 3.6, 9g carbs – interesting as to whether this is hypo or whether 3.3 is the limit
08:00, 5.7

I’d call that pretty darn good.
#Winning

Getting an insulin pump – the day has dawned

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Amy and her new pumpAmy and her new insulin pump and her new DiabeTees iPump t-shirt

Woohoo, we’re live and pumping

What a long day it’s been, but a great one and one which has left us all still smiling.

Welcome to our world…

Dr Sheldon Cooper (Amy’s new pump name), or Sheldon for short, or Shelly when he’s feeling a little sorry for himself. If you don’t know who he is then do a quick Google, he’s a character from the Big Bang Theory, one of Amy’s favourite shows. If you know who he is then all I can say is Bazinga.

What’s in a name?

Dr Sheldon Cooper says he’s one of the smartest people alive…and he probably is. He’s much smarter than those around him.
He makes many calculations each day and in his own words he’s never wrong.
His soul mate is Amy (Dr Amy Farrah Fowler).
On many levels this pump was always going to be called Sheldon.

Our day starts

Amy awoke excited at what the day would bring.
I opened a conversation: ‘so what are you going to wear today Amy?’
She didn’t know which top to wear.
I suggested ‘what about this?’ as I pulled her new pink DiabeTees iPump t-shirt out of my wardrobe.
I’d been keeping it there for the past couple of weeks, trying not to accidentally tell her I’d bought it.
She put the t-shirt on.
Delighted would be an understatement.

Where’s my pump?

In the room today was Emma our Animas pump rep, our Consultant Endocrinologist, the DSN (DSN1) who would be supporting the pump transistion, another DSN (DSN2) who’s never used an Animas Vibe and the three of us (Amy, Jane and myself). The room was pretty full.
Emma handed over the massive box to Amy who within seconds had got the pump out, battery in and raring to go.
Such a large box of stuff, but importantly containing 20 sought-after pink cannulas, to match her pink insulin pump and pink t-shirt.

On with the training

Each of us was given a pump and we all went through the menus, primarily for the Dr and two DSNs who had not used this pump before. We are the first people in paediatrics at Winchester to get an Animas Vibe, I think though we maybe be the first of many.
Amy and I already felt quite comfortable with this because of all the training we’d already had with Annie and later with Emma.

Filling up the insulin reservoir

Amy hates needles so I had no doubt that I (or Jane) would be filling the reservoirs for the first few months.
Before we left this morning I asked Amy whether she was going to go into the session nervously or with confidence. We hadn’t discussed it much but clearly she’d chosen ‘confidence’ as she took the filling kit and insulin vial.
Slowly she filled the reservoir with insulin, cleared any air bubbles, primed the pump and filled the tube.

Fitting the Inset II infusion set

Emma talked us through using the infusion set installation, something the three of us were comfortable with as we’ve all worn one for three days previously. I was surprised that the HCPs showed no real interest as I guessed they’d not used them before.
Amy installed her set with confidence, it had gone in perfectly, but disaster struck as she immediately felt faint. Under advisement from the Doctor she put her head between her knees and within 5 minutes was feeling much better again.
Here’s Amy in showing off her pink Inset II infusion set.
Amy shows off her pink ensemble

Setting up Amy’s pump

The conversation turned to the Doctor and two DSNs as Emma asked them what settings to apply on the pump for basal, and maximum bolus settings and the like. Once they decided, Amy set the pump up under direction from Emma and a close eye from me. I feel confident in setting up basals in the future, although don’t plan to do any changes by ourselves for some time yet.
Amy clipped in her infusion set to her cannula, primed the cannula with 0.3 units of Novorapid and that was it: she was live on an insulin pump.
And relax.

Lunchtime calls, bolusing beckons

It was time for a well earned break, it was lunchtime. We decided to go the cafeteria, get some food and bring it back to the training room.
30 minutes later, back in the room and Amy did a blood glucose test, chose ezCarb from the menu, entered her BG reading (4 mmol), entered the carbs (50g), clicked ‘Show Result’ and instructed the pump to give the bolus insulin (3u).
Success, a first bolus.

Almost done

After a bit more chat about temporary basal rates, sick days and school it was almost time to go, but not before we opened one of the two boxes of chocolates we’d bought for Emma and the HCPs, to say thank you.
The box said it was 23g for three chocolates, Amy had done a test, entered the carb amount and given herself a bolus within seconds.
This is one of the reasons she/we wanted the pump and as for the last 2.5 years Amy refused to have any snack over 10g/15g as she did not want to increase her daily number of injections.

Word for the day?

Brilliant.

Pink pump, pink cannula

Getting an insulin pump – the wait is over…almost

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Animas Vibe pumpsAnimas Vibe insulin pumps

The wait is over…almost

Just a quick update for now…
In three hours time we’ll be starting Amy’s appointment for fitting the pump.
We’re all excited, Amy especially, she’s been counting down the injections one by one, there’s only one left which she’ll take at breakfast time. Luckily we remembered to only take half the Levemir last night.

Questions, questions, questions

I’m normally prepared for days like this, normally writing down lists of questions I need or want answers to. When Amy and I went to the “Portsmouth Hospitals’ Diabetes “Sweet Meet” we’d written loads of questions – we were the only ones who’d done that I think – but we never asked any of them. The day had just flowed nicely and the preparation we’d done wasn’t required.
So today we’re going to wing it: I’ve not prepared any questions and I can tell you that I’m shocked I haven’t. Surely today is more important than anything else we’ve done recently? Surely today we need to leave the hospital in total confidence?

Learning together

There’s no doubt that I’ve done a lot of research about the pumps and whilst I’m sure I know relatively little compared to people who’ve used a pump for a while, I am sure that I know more about the features of this pump than the hospital does. It’s to be expected, Amy will be the first paediatric Animas Vibe wearer, so the DSNs have never needed to know anything about it.
Today then we’ll all be learning together: we’ll be learning about how to program the basal rates; the DSNs will be learning about the pump.
I hope today will prove what a good team we’ll be together. I have not doubt it will.

Over-confident?

I’m a little worried that I’m feeling over-confident about today. Lord knows I’m nervous but it’s just because it’s a major change for my daughter, if it was for me I wouldn’t be so worried.
My confidence boils down to a few things: I’ve done a lot of research, we’re not going into this blind; the #DOC has lots of Animas Vibe wearers who I know will be on-hand almost 24/7; I have phone numbers of parents whose kids are pumping with Animas.
It’s good that the appointment is today as we’re but at the hospital tomorrow for Amy’s quarterly clinic so we can report back, face-to-face, any issues we’ve had before the weekend starts.

Wish us luck then

…and expect a few tweets 🙂

 

Note to DSNs, Doctors, diabetes clinics and CCGS

I’ve referred to this journey towards a pump as a ladder, once which had rungs but just how many we didn’t know.
This process could have been a little easier for us if we’d known at any point how many steps away from the pump we were. Just a thought for you.