Diabetes UK’s Big Event 2013

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.

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


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.

Getting an insulin pump – a date with a pump

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

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

Damn you email Spam filter

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

Is the 20th July any good?

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

Hold on, you mean June?

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

Saline or Insulin?

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

A date with a pump

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

 

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

Going back to school – a Mother’s view

 

Nerves and reassurance

Amy was a bit nervous about going back to school but I wasn’t too worried as our diabetic nurse had reassured me that the office staff at Amy’s junior school were fantastic.
It was the start of the spring term and our life now seemed totally different.
 

Not much sympathy from my workplace

On the first day I couldn’t take her to school although I desperately wanted to, as I work in a preschool, my manager was off sick and the deputy manager was very unsympathetic. I remember clearly the deputy dismissing my worries as if Amy had a cold. She was annoyed that I had requested to leave work for half an hour at lunchtime to give Amy her injection and said “Oh well there’s lots of children there with diabetes, why can’t the office staff just do it.” I was angry and hurt that someone could be so unfeeling. My baby wanted and needed me there as she was frightened and anxious about injecting in a strange place. Kev worked from home and did Amy’s first injection in school as luckily he has a very understanding manager and can work from home if necessary.
 

Day two, a day off thankfully

On the second day I wasn’t working and arranged to meet our diabetes nurse at reception. I remember her explaining everything to the ‘office angels’ although diabetes wasn’t something new to them. One of the admin officers, who I had always been a bit wary of, was so calm and reassuring, she was used to treating diabetics as there were two others in the school already. Amy seemed reassured as she was shown where we could do her injection at lunchtime and she had her own tray to keep all her hypo stuff in. She seemed to be coping quite well and she almost liked the celebrity status: being allowed to jump the queue at lunch; leaving lessons 5 minutes early before lunch; being escorted by a friend for lunch; being allowed to take her toy cat, “Little B”, to every lesson.
 

The ‘office angels’

I remember by the end of the fourth day that I was overwrought; angry because of the unbelievably dismissive attitude of my deputy manager and exhausted as I had to be strong for Amy. The deputy had made a snide comment as I left at lunchtime and when I got to school the office staff were so nice to me that I just burst into floods of tears. The admin officer gave me a big hug which made me feel loads better and she reassured me that I was doing fine and Amy was coping very well as she had a lovely family supporting her. This is why I will always think of them as ‘the office angels’.
 

Winning the postcode lottery

Having talked to other mums of diabetic kids who have told me horror stories about their school’s provision, I realise how lucky Amy was to have developed diabetes whilst at Fair Oak Junior School. The staff at the school helped Amy to cope with a life-changing condition, making sure she was okay, helping with her injections, phoning me if Amy had hypos.
I have nothing but admiration and gratitude for them but especially my ‘office angels’. I will never forget their kindness.

Going back to school – a diabetic 10 year old’s view

 

In two minds

I was in two minds about going back to school: I wanted to see my friends as I hadn’t seen them for ages but I had several concerns about dealing with diabetes at school when my parents weren’t around.

 

My first moment in class

When I went into class on that first day I was escorted by one of the office ladies who told my teacher about diabetes. I didn’t think it was that serious. That morning we did an activity where you had to write down your New Year’s resolutions and then if you wanted to you could read them out. As I didn’t care if everyone knew or not, I wrote and said “to do all my injections properly”. Now, I wish I hadn’t because that meant I had to tell everyone in my class I had diabetes. I didn’t care about everyone knowing, not then anyway, but now sometimes I wish that not everyone knew as I don’t want them to think of me as a diabetic first and a child afterwards. Daddy says people see me for my personality first, not diabetes, but I’m not sure.

 

Injections

I wanted Mummy or Daddy to do all my midday injections with me but it was hard as they both had to work. My mum works at a pre-school quite close to my school therefore it was always her that had to come in for an hour during lunch. I was very happy that she could come in, so you can imagine how upset I was when she told me that she couldn’t do it on Thursdays. For the first couple of Thursdays Daddy come in to do the injections but he couldn’t do it forever as his work was 30 minutes drive away. I said to Mummy that she would keep saying the same for the other days until eventually she wouldn’t come in at all. And I was right. I started doing the injections with the office ladies, but I wanted my Mum. I felt like I had to control diabetes all by myself. I was scared.

 

Friendships

Luckily for me I have a lovely set of friends and that meant that this disease would not affect our friendship. All my friends volunteered to go to lunch early with me (out of kindness, not just because they wanted to go to lunch early) but I could only pick one, so they took it in turns. I am so glad my friends stayed by my side, it didn’t even occur to me that they might ditch me as a friend and it would have been a very big shock if they had.

 

Where’s my P.E. (Physical Education) class gone?

I was annoyed EVERY time I did P.E. (which was a lot) as I had to go all the way to the office and do a blood glucose test. If I was alright then I would go to P.E. but if I was lower than 12 I had to eat something before. Unfortunately I didn’t always know where P.E. was, it could have been the hall, the field, the upper school playground, the lower school playground, the millenium garden or even the running track. So I would have to visit every single one of those places and sometimes by the time I had almost visited them all, the class would have finished P.E. and be back in the classroom getting changed!