Best first transition clinic ever?

transition

On Tuesday Amy had her first transition clinic, it was everything thing it should have been and a vast difference from the first one forced upon her in January 2016.
She was in control of when transition started and who would be there at clinic.
Perfect.

Previously: Worst transition clinic ever?

In January 2016 after just turning 15 Amy’s first attempted transition clinic was an absolute disaster, especially as she had been told in the previous November what would happen and said that she didn’t want to go in by herself.
In reality Amy probably was ready to prepare for transition and the clinic team knew that, so I’m absolutely sure they thought they were doing the right thing, but they didn’t listen to Amy, or forgot, both of which were totally wrong.
Her wishes: I’m not ready to transition yet.
Our view of what clinic thought: We’ll do what we want, when we want, we’re in control.
After a family discussion Jane emailed the team and from that day on we never heard about transition

A broken relationship with clinic?

We didn’t let our anger from January 2016 last for very long, we emailed them, they responded very well, we moved on.
We knew that our team woke up every day with a desire to do a good job, they are lovely personable people with a knowledge far exceeding the little bits we understand about this condition and if we ever needed support they would be there.
But this one action almost saw us move clinics to another team, it felt that bad, one more wrong move and we’d be gone, to the bright lights of London’s UCLH or staying local with Southampton UHS.

“Are you ready to take the next step?”

When transition was mentioned back in December Amy agreed the time was right, but it brought a huge moment of sadness from both Amy and her consultant who’s been with her since diagnosis, and the ward flooded with tears. But I knew the new consultant a little and knew he’s just as lovely as the first, it made things a little easier.

The appointment

With nerves aplenty Amy and I entered the new centre, all gleeming white, with its touchscreen login screens, it already felt we’d moved from a provincial hospital to a bright-lights-city one.
We moved to the new waiting area and saw a few other other teenagers and young people. There was food available – but no blooming nutrition info! – but was it for us, or not? It was.
I chatted with one of teenagers ‘M’ who was using a Dario meter on her iPhone, I’d not seen one before.
This was already so much more relaxing that we thought, Amy was definitely relaxed and seeing the face of her most recent DSN certainly helped that.

Helping the Young People ask for help: a great idea

‘M’ picked up a piece of laminated A4 which had two dozen words/phrases on it with an area to put a tick or a dot. She explained that all you need to do is put a mark by anything you’d like to discuss.
Amy picked it up and we joked about ticking all the rebel ones: ‘alcohol’, ‘sex’, ‘recreational drugs’, ‘tattoos and piercings’, but in the end opted for ‘driving’, ‘alcohol’ and ‘insulin pumps’.
I could see how brilliant this idea was. How many people, adults let alone young people, would just freeze under embarrassment when required to speak those words? But to tick stuff before you speak to anyone, and then just hand the sheet in, yes, I can see that’s far easier.

Back with the old DSN

They’d explained that the whole team wouldn’t be changing at transition clinic and Amy’s DSN would remain the same, that’s a good thing, she’s lovely.
HbA1c was done, questions asked, Diasend graphs gone over and lots of questions about delaying the switch to a new insulin pump for Amy. Hers is 4 years old in June but it’s not a good time, what with GCSEs from May to end of June, NCS starting afterwards until a couple of days before we go backpacking around India for a month (again 🙂 ).

The new consultant

I’ve spoken with Dr P a few times, he’s great, I like his attitude and his way with people.
I’d dared Amy to greet him in his native German tongue with something like ‘Hi, my Dad doesn’t understand German and he’s an idiot’ but she bottled it.
From the word go Dr P addressed Amy and told her a few things which are very important (I’m paraphrasing here):

  • this is your clinic
  • you have the right to come in with or without your parents, it’s up to you.
  • your parents have the right to come in without you should they wish.
  • we’re here to help you transition to adult care, to become educated enough to move on without fear or worry
  • we’re here to prepare you to be okay about coming to clinic by yourself, just in case you go to university, or just want to come by yourself.

This was all exactly what we wanted to hear.

A long time later

We’d arrived at clinic at 5pm, it was now gone 6:30pm and we’d spent at most ten minutes waiting.
Amy had chatted with ‘M’ who was interested in Amy’s views about insulin pumps, it got Amy waxing lyrical about its benefits to her: ‘it’s changed my life’, ‘I’d never go back to MDI’, etc..
We’d seen the DSN, the Consultant and spent a long time with the new Dietician.
Amy was relaxed, as was I.

We arranged the next appointment and left in silence until Amy broke it with “that was really good”.
Best first transition clinic ever?
Yes, probably.

Type1 Double Dose, a Diabetes Mum’s story, by Lucy Veal-Johnson – Part 3

I met Lucy and her family about a year ago, at an event organised by the local (South Hampshire area) families support group, Seahawks. We’ve spoken quite a bit, through highs, through lows and one day I offered her the chance to tell her story.
Have you already read part 1, Night-crawler to Day-walker or part 2, Night-crawler to Nightscouter?
Here’s part three of a three part story.

15045327_10154718440976913_1948820034_o
Paige and me enjoying a coffee soon after diagnosis

A BIG THANK YOU

When Sienna first got diagnosed all our family and friends grouped together and helped us gain our new normal, living life just a bit differently. Friends arranging their working lives, arranging their own children’s bedrooms to accommodate our three children, to arrange the washing of their school clothes for the next day at school all whilst Sienna’s close family gathered around and had their own training on T1.

Our friends joked saying it was like a play group with all the children playing together, but that they were all well behaved. I think our heads were obviously not in the right place to remember to thank everyone for their own efforts. We really do have some amazing and very loving friends, they really have stood by our sides through the worst and have shared some awesome highs. So to all the people that have stood by, watched over us, helped out in anyway and have taken the time to learn and ask about T1 we really are truly thankful to them.
Eighteen months on and now with Nightscout and Dexcom in tow we have taken our normal and smashed it. We have found caring for Sienna less stressful, don’t get me wrong for us we still work hard on her D everyday it’s just a little bit easier and her HbA1c is now at a health 7.5.

A big sister’s knowledge

It’s a Friday night sleep over for Paige with a friend having sweets, treats and films. I had the girls in one room with mattresses on the floor and as we do every night we go up and check Sienna’s levels.
Paige’s friend is a lovely sweet girl with a heart of gold was very inquisitive that evening asking if Sienna’s finger clicker hurt her and would it hurt her. With that I wound the needle around and down then offered it to her “you can try it if you want” she shied away and said she couldn’t do it, with that Paige nicked it off her and said “here I’ll show you how to do it”.
This girl from day one has amazed me with her knowledge of T1 and taken a keen interest in caring for Sienna as a big sister. She knew how to click her sisters finger and get the reading as well as carb count and enter the carbs in her meter. She knew the diabetes book like the back of her hand and got involved in doing a 2 minute discussion at school talking about and spreading the word on type 1 for a competition. Such a chatterbox I think she said she talked for six minutes, I giggled when she told me. Massive well done.

(Off track slightly but who’s not going to big up their child at any given minute especially at a time like this.)

That sinking feeling

Paige clicked her finger and read out that her bloods were 31.6mmol.
31.6mmol!
31point6She shocked herself so I went on to say that because she had been eating sweets that she must go was her hands. Right at that moment my heart sank slightly and every part of me right there so desperately wanted the next reading to be a hell of a lot lower. Some part of me was trying to justify such a high reading, maybe she had way too much to eat.
I asked them what they had had.
They had shared one small packet of jellies and half packet of toffee popcorn so there was no way in hell it should have been that high. I love candy floss and have eaten a whole packet (Obviously, I’m not sharing that, so I’m going to eat the whole bag) and could probably eat a lot more and still my sugars wouldn’t be that high after.
She came back after washing her hand and said to her friend that sugar on her hands would give a false reading. My heart melting again because she has just retained so much information but I knew deep down that our journey would start again only this time Paige had a very unwanted friend onboard.

Heart in my mouth

Again she clicked and with my heart in my mouth I prayed and hoped to God.
Please, please don’t let it be higher I said to myself. The meter beeped and read HI.
My heart skipped numerous beats and inside I sank.
We all remember the first time we went through a diagnosis! Yep, that feeling. Paige’s face dropped but she looked to me and basically wanted reassurance that maybe she didn’t wash her hands properly. “Yes definitely and No I’m not worried” I said. Going to see her dad I explained the situation. He said exactly what had whizzed in and out of my mind in seconds before and that was maybe she had eaten too much too quick. The realisation of that statement meant that he was trying to justify to the reason why, Love this man to bits but this time I was not a paranoid mum. I quickly got online and told my T1 family about the situation and asked for guidance.
Thank you for all the replies back offering help. Within seconds twenty or so responses came back saying to go with her and wash her hands and to click a toe and reassured me that I should take her straight to hospital, to check ketones and to give plenty to drink etc.
Paige had been weeing a lot that evening not that I noticed as she’s old enough to take herself to the loo as well coming down for more drinks.

In total disbelief

It was only when I sat in total disbelief on the sofa that all the pieces started fitting together. I decided to go with her and wash both her and my hands. We clicked again, this was now the 3rd click and the meter beeped again to read a HI for the second time. I did ketones to see how poorly she was but they were 0.1.
I knew then that if we went to hospital she would be seeing the diabetes team that day without fail but how could I actually turn around to her and say “Yes you have type 1 diabetes” but at the same time I didn’t want to lie to her. When Sienna was diagnosed she was very poorly but this diagnosis was at the opposite end of the scale and Paige was a lot older. Her friend came downstairs whilst I rang the NHS to get more advice and even the nurse said as she’s only just finished eating that her sugars would be high. Sorry but this was rubbish I thought to myself.
One more test and hour later and she was still HI, I explained that we would be going to hospital and that she would have to have a test to see how poorly she was but at the same time not saying that she definitely had D. We left daddy snoring in bed and woke my 11 year old son up to keep said friend company, they had been friends since pre-school so she wouldn’t feel left out so to speak.

15051995_10154718424276913_1653195420_oSienna supports her sister in hospital

A journey forgotten

We gathered our things and drove off to the hospital and I’m really sorry but I can not remember our conversations on her possibly having T1.
On arrival to the hospital it did take forever for her to be seen but once she was she had to have another clicker. Now for some people like us with young one’s you do think of their poor fingers and how sore they get after 3,360 or so clickers and the broken skin. A very emotional downfall to T1D as well as the cannula insertions on delicate skin and the amount of time we have to hurt our children to insert a needle. The constant numbers running around our heads, we now had double the work to do, double the dose of insulin to deal with as Paige is older her insulin doses were a lot higher, Double the pain of watching them go through this and not being able to take it away from them, treating both Hi’s and Lo’s throughout day and night was doubled a mammoth task that we now faced. But we DID IT and we will continue to do it for as long as it takes because we have to.
I have always said and will continue to say that as parent of T1D we all take an emotional battering everyday but put it all to the back of our heads and it only comes to the surface when talking or writing about this condition.

A journey shared

We shared Paige’s journey throughout her stay at hospital with our T1 family and we gained a few more friends along the way, we had been promoted to the families with two T1’s. Paige made the doctors and nurses jaw drop with how much she knew and how brave she had been doing her 1st injection and now that we have settled into some sort of normality she is still brave as all T1’s are. Watching Sienna in hospital being so supportive, so loving and empathetic to Paige was admirable for all to see. Sienna was offering Paige her hand to hold whilst she watched her do her injection and stroking her knee telling her how brave she was. All these things she remembered Paige did and still does with her.
They will forever and always have T1D to deal with but nothing can smash the bond of being a sister and we will not let anything stand in their way.

So to all you Supermums, Dads, Grandma’s, Aunties, Uncles, Brothers and Sisters you can do it, as a friend once told me you are braver than you were yesterday, stronger than you think and smarter than you seem.
Xx

 

Basingstoke Type 1 Diabetes Awareness Evening 11/03/16

The start of a whirlwind long weekend of diabetes events was an event organised by our clinic which jointly covers the Royal Hampshire County Hospital and Basingstoke Hospital, and their surrounding areas.

There was one last year and I found it really good, an opportunity to speak with our consultant outside of clinic walls, to mingle with other parents and grill the reps.

Truth be told I was rather nervous about attending this event.

The last time we saw the team was this fateful day back in January and my anger at the apparent complete disregard for our wishes almost saw us transfer elsewhere. So this would be the first time we met since that clinic. How would it go, would I lose it or could we still be ‘friends’?

I decided to put that last clinic down as a bad job, a mistake, a misunderstanding and walked into the room as if that clinic had never happened. And I’m so glad I did. Things appear to be back to normal although we’ll not know for sure until the next clinic.

These events are great for networking and we’d agreed to meet several people there; Steve and Becky; Matt, Sonal and their daughter who adores Amy. I bumped into Claire who runs the Basingstoke PWD group and I suddenly remembered I’m meant to be talking about Social Media and Nightscout there soon so I went over to discuss it. (*writes date in diary before he forgets*). Amy had made a little gift for Matt’s daughter who was thrilled.

The room filled with families and many of us left to listening to the Tech talk. Matt and I haad hoped to present Nightscout as part of this talk but its lack of clinical trials meant we were denied. Shame really as I think the parents needed to hear it, it would have been far more appropriate than talking about Smart Insulin etc.. But then again, there seemed to be so many families who nothing of this stuff. One person even asked if there was any truth that Reiki could help, something I consider as helpful to Type 1 as slapping, although hopefully less harmful.

Matt and I had joked that I’d ask a question after the session, that question being ‘Matt, what’s your daughter’s glucose level right now?’ and looking at his Pebble he’d reply ‘x.xx mmmol/l, how about Amy’s?’ at which point I’d look at my watch. We never did, I bottled it. It could have been funny though right?

The next session was about Transition and Amy and Jane sat in for that. I was gasping for a drink so headed out only to bump into fellow DiabetesDad and cyclist Gavin. Gavin asked if I could chat with him about Nightscout for 640g and I creased up as Matt (the 640g Nightscout solution provider) was a metre away. “Matt, meet Gavin” I mentally said Sorry to Sonal for given her husband even more support to do, although I’m pretty sure Gavin will figure it all out.

I never ventured back into the Transition talk and it’s probabably a good thing as Jane told me that apparently at the first transition clinic they see the kid first and then the parents and child together afterwards. So why on earth did they not do that with us? I just may have exploded if I’d been in there.

I had a chat to Emma, our pump rep, quizzing her on the rumours of Animas’s next pump name, release date and features. She’s good though and gave nothing away, thinking obviously that no-one in the community knows about the 2017 release date of the pump which like Medtronic’s 670g will feature a hypo and hyper minimiser. I already knew that this new pump will use Dexcom G5 as its base, we’d prefer G4 of course with its 4x longer lasting transmitter, but G5 will be awesome in this pump.

It had been a great night, lots of interactivity, lots of chats, lots of meetups and more importantly I’d not glared at the team.

Diaversary #4 – meh!

smiley-face-meh_designWas it really four years ago that Jane took Amy to the Doctors to find out what was wrong? Four years since the Doctor took that simple blood test and called us within minutes to tell us to go to hospital? Four years since my daughter found her childhood all gone?

We all try to be quite positive about life with diabetes in general but not today, today sucks. Big time. Turns out I don’t quite feel as positive as I did last year.

Whilst I truly believe that Amy’s diagnosis has actually helped in certain ways (determination to succeed, family health) I’d give it all back in a heartbeat if it meant Amy never had to do another set change, or finger prick glucose test, or think about this condition ever again.

The year ends with Amy having her lowest HbA1c yet at 7.2% and with us knowing how we could get it lower if we chose to try a little more. There’s no doubt that we’ve done some great Diabetes related things this year and that mainly focuses around the other people/children with Type 1 Diabetes, or their parents, we’ve met this year. At the moment it’s hard to focus on that.

So forget all those fancy electronic devices, your bionic pancreases, your smart insulin; just figure out how to swap my pancreas with hers. That’ll do me, let me take this burden away from her.

I’d like to think that these words will be the last time I think about Diabetes today. But I know it won’t.

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

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

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

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

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

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

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

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

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

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

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

TweetHannah

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

TweetHannah2

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

TweetPartha

Lilly Diabetes Conference

Patiently Waiting – CGM, Animas, Dexcom and Kids

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

Continuous Glucose Monitoring? What’s that then?

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

CGM, an expensive option

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

Does anyone really need CGM?

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

Dexcom G4

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

Animas and their Dexcom G4 licence…for adults

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

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

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

Where’s the logic?

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

Finding an alternative method

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

Is that a licence I can see in the distance?

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

Of course I really hope this rumour is true.

TrialNet – an eagerly awaited result

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

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

Affecting the whole family

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

What’s next in the trial?

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

Want to find out more about TrialNet

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

TrialNet – Do I really want to know if I may get Type 1 Diabetes?

Today, Emilia, myself and a friend are taking our first steps into clinical trials called TrialNet to see if it’s likely that we may develop Type 1 Diabetes soon.
I think it’s fair to say that we’re all slightly nervous.

What it TrialNet?

TrialNet is a global research project into how Type 1 Diabetes occurs. There are centres in many countries, with Bristol being the main one in the UK but with others joining in including Bournemouth where we’re going today. I believe Portsmouth which is also local to us will be joining in soon.
I first found out about TrialNet via the #DOC (diabetes online community) but it was only following a talk by Dr Kathleen Gillispie at the JDRF Discovery Day in Bristol in April that I started looking into it properly.

Do I really want to know?

Once I started looking at TrialNet the question arose of whether I really wanted to know the answer it might provide.
Quite simply the answer is ‘yes’, although it’s taken me months of questioning myself to make sure I’m sure about this.
The result could go either way but it’s more likely Emilia and I will get the all clear and that would save a few years of worrying. If it turns out either of us are positive for the antibodies then we can proceed on to Stage 2 of the trial, if we choose. It’s important to note that we can opt out at any time.
Initially I signed up, hoping that Emilia might choose to but not really expecting that to happen. I’m pleased that she’s decided to come too as I’m sure she’s been silently worrying about her chances of getting Type 1.

The ‘Natural History Study’ trial

We’re taking part in the Natural History Study where anyone between 5-45 (yes I am young enough, just) with a parent, sibling or child can take part. It’s also open people aged 5-20 who have a cousin, aunt, niece, nephew or grandchild. Quite how a twenty year old can end up with a grandchild with Type 1 I can’t quite work out but presumably if a grandparent has Type 1 and the parents are too old to take part any grandchild can.
We’re visiting the Bournemouth Diabetes and Endocrine Centre today as it’s only 45 minutes drive away but if you don’t have a local centre then you can send your blood sample via post; contact your nearest TrialNet centre to discuss the options.

Helping each other

I know very little about clinical trials but I’ve always imagined that they’re all about the research and little about the person taking part. With TrialNet this definitely isn’t the case as all three of us will ultimately find out whether we’re likely to develop Type 1 Diabetes soon or not.
More importantly we’re helping the trial and I feel this is vitally important to help the scientists learn more and ultimately find a cure or preventative medicine.

Want to find out more about TrialNet

If you want to find out more about TrialNet visit the UK web site here: http://www.bris.ac.uk/trialnet-uk/index.html.

Gatecrashing a CCG Patient Focus Group

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.

How social media helps us with Type 1 Diabetes

Helping the newly diagnosed

In one of the very first pages I did for this blog I wrote this about the UK Diabetes Online Community on Twitter (#GBDOC):

“The info you can find is so useful that I think that the first advice from any DSN (diabetes specialist nurse) to any newly diagnosed UK patient – or their parent(s) if it’s a child – should be ‘get yourself on Twitter and search for #gbdoc’. Perhaps they should even take it further and refuse to let you leave hospital until you’ve set up your Twitter account and started to follow a few on the #gbdoc people… okay, maybe not.”

How? What? Where? Why?

I’ve created a leaflet which explains how social media has been useful to us; when we’ve used it and the responses we got back; the types of social media channels available; how to start.

NOTE: You can easily get to this page using the URL: http://bit.ly/circlesofblueleaflet

Click the leaflet on the right to download it, have a read and let me know what you think. If you’re going to print it, print it double sided and fold the leaflet as shown at the bottom of page 1.

If you think it’ll be useful to anyone please send them a link to this page, or share it on their Facebook page using the button below.

Health Care Professionals and Diabetes charities

I understand you might not wish to put this out as official material but if you’d like to do something similar I’m happy to help. Hopefully though you can point people in this page’s direction, using this link: http://bit.ly/circlesofblueleaflet.
Want to hear the view of a Doctor about the potential of Social Media use? Read this by Dr Partha Kar: Social media in diabetes: bane or boon?.

First HbA1c since pump…anxiously waiting

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…

Getting an insulin pump – the day has dawned

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

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.

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? 🙂

Getting an insulin pump – official pump demo – Animas Vibe

Rung five – official pump demo – Animas Vibe

Yesterday we had a 4pm meeting with our local Animas representative Emma at our the hospital. It was Emma’s first meeting with the Paediatrics Diabetes Team at Winchester and that meeting had happened earlier yesterday, which is why I tagged ours on afterwards. Jane and Amy were travelling up separately from another direction.
Jane and I had already had a great demo of an Animas Vibe from Annie a couple of weeks back, but this would be Amy’s first demo, although she’d played with a similar pump earlier.
The RHCH hospital in Winchester only has a couple of adults using an Animas pump, if we go for it Amy will be the first child with one.

Like a blind date

It was funny though, like a blind date where literally I had no idea what Emma looked like. We’d arranged to meet in Costa at the hospital, but it’s large enough Costa to get lost in. I was first in – Jane/Amy were coming separately – followed in by two ladies. I got a coffee, they sat down, and I scanned them – hey, no, not like that! – looking for Animas logos/words/bags but nothing. So that wasn’t Emma with a colleague then, that’s fine, must keep a look out though. Jane/Amy arrived, ordered drinks, well at least Jane did, Costa don’t seem to do anything for a person with diabetes who doesn’t want to take any insulin at that moment. No-one else came in who looked like a rep, no-one else carrying anything. I thought about texting Emma but didn’t but looked over again at the ladies and noticed a tube on the table, scanning around I saw an Inset II infusion set. I went over and introduced myself. We’d been in the same place together for 20 minutes.
The other lady was from another part of Johnston and Johnston, who’s switching to the Animas side soon.

How to start a demo properly

I’d already prepared Emma by telling her not to talk about or demo filling the cartridge; to make sure needle sighting was kept to bare minimum; to make sure she brought pink infusion sets; to make sure she brought a pink Animas Vibe pump.
Emma looked Amy straight in the eye and said (something like) “Amy, how are you and what are you feeling about pumps at the moment?”, followed by “What are you looking forward to about getting a pump?” followed by “What are you even slightly worried about with the pump?”
For probably ten, fifteen or maybe twenty minutes Jane and I took a back seat and listened to their conversation. This was brilliant; exactly what we wanted; exactly what Amy needed; exactly what should have been done, well done Emma.

A pump of many colours

Emma got out five pumps, one brand new which she Amy to look at, hold and feel. The other four were the demo pumps and came in black, silver, blue and pink. Any guesses for which one Amy picked up immediately? It was pink. The only colour missing was green, but that didn’t matter as we’d seen Annie’s daughter’s green one a couple of weeks back. The green would be Amy’s second choice as it’s a nice looking colour.

On to the demo

Emma asked Amy what she does for a bolus at the moment and Amy spoke about her routine. We then ran through how that would be done on the pump. For once I was quicker on the buttons and menus than Amy, but that won’t last, she’ll soon be operating it and blurred-lightning-warp speed, so fast I won’t be able to keep up, so I’m chalking this up as a win for me 🙂
First bolus done, then another, then another.

Combo-bolusing

Emma demoed the different bolus types and spoke for a while about combo (or ‘split’) bolusing. The idea is that some foods take longer for the ‘sugar’ spike to happen, pizza for example and pasta meals, whereas others spike and drop very quickly, such as things high in sugar and low in fat.
This is not something you can easily do when on multiple daily injections (MDI), you literally give the insulin and it does it job in whatever time frame it works in. You give all the insulin in one go, normally before the meal or after, and the only way you can split bolus is to take two different injections. Name me a 12 year old who will be happy to do that!
It’s so easy to split bolus on a pump and makes so much sense, although I can’t make up my mind whether I’m just sold on this idea and it’s useless or whether it’s a damn handy feature. It seems to make so much sense.
I’m sure all pumps are similar but on the Vibe split-bolusing – or combo bolusing as they call it – is so easy: select the option; say how much (e.g 30%) you want now and how much (e.g. 70%) you want later; set the duration for the bolus (e.g. 4 hours); it’s done. The 30% (or whatever) will be delivered now, the 70% (etc.) will be delivered over the next 4 (etc.) hours.
So presumably the next ‘Carbs & Cals’ book will by ‘Carbs & Cals & Protein & Fat & SplitBolus’?

Basals and Temporary Basals

On MDI Amy gives herself about 13 units of Levemir at a set time each day and this lasts around 20-24 hours. Many people say less, others don’t, it’s a debatable area. One thing’s for sure though and that this Levemir is known as ‘basal’ insulin and has a long acting time, designed to get her through the day and mimic what a healthy pancreas does.
On a pump the big advantage is that no longer is a basal injection required as the pump dispenses a very small amount of fast-acting insulin (Novarapid, Apidra) every 2 or 3 minutes.
This advantage becomes even bigger when Amy is doing some sport as exercise will more than likely drop her blood glucose levels. With the pump you can set a Temporary Basal Rate (TBR) to overcome this, reducing the default basal rate by any percentage (in increments of 10). Setting a 30% TBR means she’ll only be getting 70%(ish) of her normal basal insulin for whatever period she chooses. When setting the TBR you not only decide the amount but also the length of time it’s active for, after which it reverts to normal.

Infusion set change

Jane and I had already done a set change with Annie a couple of weeks back, with Annie placing it on her arm for the first time. I didn’t step forward to be the subject last time but this time I’d decided I’d step up and be the test dummy. Amy didn’t want to do it on herself or on me, so Emma got out a couple of sponge-like pads.
Emma gave Amy an Inset II infusion set and took one for herself. Slowly she talked Amy through the process and explained some of the design benefits of the set. Amy was cautious but managed the change very quickly, although didn’t do one part correctly and the set didn’t stick the the pad. I could tell Amy was concerned this would happy all the time in real life but was assured it is normally ok. She did it again and it worked fine.

End of a great demo

A lot of questions from us and Amy later and the demo ended.
Emma had demonstrated the products very well, she’d answered every question we had, she’d reassured Amy of any worries, she’d confirmed all the good things Amy already knew. Thanks Emma.
Amy left there with a smile.