Open Loops, Closed Loops and Tim Omer’s Hackabetes Artificial Pancreas Project (HAPP)

It was a turn of good fortune that Tim Omer’s presentation to the London Type 1s group fell on the same day as the Medical Technology Awareness Week Reception at Parliament I attended. I was looking forward to this event, it didn’t disappoint.

But first: That annoying Guardian article

Having created our first xDrip in early January and using it effectively since then I was more than pleased to read that Stephen Black’s xDrip design was at the center of his system. I was intrigued, I needed to learn more and an article about Tim in the Guardian gave me that chance. Unfortunately although Tim’s article from the Guardian in late October gave a great overview of what he was trying to do the journalist neglected to print any of the information Tim gave them about who designed the different parts. I’ll be honest, this annoyed me, it’s lazy journalism and I’m suprised the author, Lord Darzi, who has a medical and scientific vocation, did not list the relevant sources.

A bloody nice bloke

I’d never met Tim before but what came across strongly was that he’s very knowledgeable about everything Type 1 tech, whether it be at Dexcom G4 or G5, artificial pancreases, insulins, many types of bolusing as well as the tech stuff, like Bluetooth, RF and NFC to name but a few. He’s also a very nice chap, more than happy to answer any question to help the person asking, really Paying It Forward to make others’ lives easier. As Paying It Forward is my current voie de vie it’s clear Tim and I would get on well. Then add a love a travel and all round geekiness and it gets even better.

A brief history of time…it’s only three years long

Tim spent quite a while going through the history which led to HAPP, from John Costik, Lane Desborough, Jason Adams, Ben West and all the other Nightscout founders and developers, then onto to talk about Dana and Scott Leibrand being the first to ‘close the loop’ – that’s where the pump is controlled based on inputs from CGM data. He spent a good bit of time crediting those forerunners in enabling him to get where he is now.

Let’s talk about Loops baby

Let’s stop for a moment to talk about about loops.
An ‘open loop’ design takes CGM data and suggests actions, the pump is never touched, or even connected to the system.
A ‘closed loop’ will actually control the pump.
A ‘closed loop’ system is therefore probably what people would see as an actual artificial pancreas, it controls the pump to reduce or increase the level of insulin given. One type of a ‘closed loop’ system is that run by Dana/Scott and follows the OpenAPS method where it constantly puts on TBRs (temporary basal rates) and will potentially stop all basal insulin delivery for a moment of time, or increase the amount of insulin for a moment of time. This use of TBRs is for me an important thing as it’s a safety mechanism, given that it is constantly monitoring, calculating and adjusting. Just imagine what would happen if the system gave a 2 unit ‘correction’ and BGs started coming down rapidly, it couldn’t backtrack. That’s not the case with TBRs, much safer indeed.
I’ve seen the results of Dana’s system, it’s very, very impressive.
And it’s not just Dana: there’s 16 people who are running a ‘closed loop’ OpenAPS system. Amazing eh?
Going back to ‘open loops’, it’s just what we do already right, using Smart Meters or our brains? At the moment us parents and T1s make decisions many times a day about what action to take to amend a glucose level that’s heading out of range. But the problem is that emotion is brought into the loop (sorry – dreadful pun) and we end up over-correcting too often. And we have to think to take a look at the BG or CGM trend and do something. An ‘open loop’ sorts some of that out by using notifications and suggestions and of course you don’t need to accept the suggestion.

HAPPy days

So where is Tim now with HAPP? It’s at the ‘open loop’ stage, where it runs nicely on his mobile phone and sends notifications to his watch which he can choose to act on or not. Although I noticed I’m not sure that everyone realised that Tim had set a couple of TBR adjustments during his demo. At the end of the demo he showed us the results with his own Nightscout page and everyone could see the 0% TBRs he’d put on, which on HAPP had suggested and Tim felt comfortable with.

A HAPPy future

Once Tim has honed his current ‘open loop’ system he will be trying to move it to the ‘closed loop’ stage.
He’s determined, he’s knowledgeable, he’s very resourceful.
I’m sure he will get there and I wish him good luck.
Moreover, I really hope to get to meet him properly one day and have time to talk.

But what about us?

I’m very behind a homemade open loop system for Amy, I’ve got no problem with that, although I can’t imagine it’s anything we’ll look in the coming months. It could monitor Amy and give suggestions as to TBRs to put on and with her knowledge of what else is going on she could choose to action those suggestions or not.
Her choice.
So, no ‘closed loop’ desire for us them.
But if it were me…I’d already have a closed loop system or be working towards it. I’d leap into this technology because after all I’m a computer programmer so I could tailor it.
Amy can’t do that and I won’t mess with her health.

As far as all of us in that room are concerned…. #WeAreNotWaiting

Further information

The Guardian article about Tim’s HAPP
Tim Omer’s HAPP GitHub

Presenting Nightscout at CWD FFL 2015 – the videos

This article contains the three presentation videos recorded at Children with Diabetes Friends for Life 2015 at Windsor on November 1st 2015. They are available on the Nightscout UK YouTube channel individually, or as a playlist.

Introduction

Here’s an uplifting video previewing the Nightscout conferences taking part in the Fall Autumn of 2015.

(Watch on YouTube)

Part One

A moving introduction to Nightscout from Wes and then the ‘What Nightscout Means To Me’ presentations from Kate and Jesus.

(Watch on YouTube)

Part Two

Myself, Tim and Stuart give ‘What Nightscout Means To Me’ presentations. Kate introduces Nightscout web pages, apps and CarePortal, Stuart introduces the advanced options, I introduce the reporting options, then take the mick out of Wes’s Apple Watch a little before reminding everyone that Nightscout is DIY, no-one will do it for you.

(Watch on YouTube)

Nightscout Workshop at CWD FFL 2015

You might like to read the article about the morning’s presentation of Nightscout to families at the CWD FFL 2015 conference if you’ve not already done so.

Afternoon Presentation/Workshop

Nightscout UK teamIt seems the afternoon session was the only one actually listed in the FFL programme so we had more people, about 30, attending.
Like the morning session they were really attentive, most of them knew Nightscout already, they wanted it, they needed it and they thankfully had a lot of questions.

 
First we gave the obligatory warning that Nightscout isn’t an approved thing, it can’t be bought, it’s not something anyone would build for you, you should never make a medical decision based on information shown etc. etc..

After debunking the myth that this was a solution only available to nerdy geeks we showed the routes into Nightscout from a ‘How Do You Get Your CGM In The Cloud‘ article, quickly dismissing some of the USA-centric options like Share and focussing on using a Dexcom receiver, xDrip device or using the uploader for Medtronic CGM (not 640g).
Kate showed the original ‘rig’ where a phone is directly connected to a Dexcom receiver as this is what her family first used, but now they use xDrip.

xdrip circuit
xdrip1xdrip2

I presented the xDrip wiring diagram and hopefully quickly busted the myth that it’s hard to build. For me this was the easiest bit to present as I knew most of the audience just got it, for some the penny dropped during the presentation, for some it just reaffirmed what they already knew and thought.
People were keen to see some model xDrips so I passed my two spares to members of the audience, whilst Tim demonstrated the tiny one in a TicTac box which he wears on a band around his bicep which he prefers to do so he doesn’t forget it.
Jesus talked about the components required to build MMCommander to get CGM data from Enlites (for Medtronic 530 and Veo pumps) into Nightscout, which received a lot of interest from the audience.
In the last slide Kate spoke about the different cloud services which were required for a standard Nightscout installation: Azure, for the web site; MongoLab, where the data is held; GitHub, where the code is for everything.

Workshop session

Nightscout afternoon sessionsAt the start of the workshop session we split into two tables, one for Medtronic with Jesus, one for Dexcom/xDrip with Kate, Tim and myself. Stuart meanwhile helped one of the audience members sort out issues with her set up, she left with it working properly.
I spent most of my time showing the two of the different xDrips I’d built, fielding questions about the components or how to build them or issues I faced.

It’s hard to imagine how the session could have gone any better: people seemed to get the answers they needed; people seemed engaged; many said they would order the components that night and set up Nightscout as soon as possible.
From my point of view we had achieved our goal, that one family walked away from the presentation/workshop having discovered something they could set up to help them. But in this case it wasn’t one, it was probably 20 or 30.

Presenting Nightscout to Families at CWD FFL UK 2015

Nighscout FFL, Kev, what nightscout means

Building a team for Old Blighty

Back in September Wes from the USA based Nightscout Foundation gave me the honour (yep Wes, there’s a ‘u’ in honour 🙂 ) of asking me to join a faculty team they were having at the Children With Diabetes Friends For Life UK conference which took place last weekend. Wes was gathering a team of Nightscout and xDrip users together with the aim of showing families what Nightscout does for us.

Nightscout UK team
Left to right: Stuart, Jesus, Wes, Kate, Kev, Tim

And so the team was formed with me, Wes, along with Stuart and Kate whose kids have Type1, and Tim and Jesus who both have Type 1 themselves. Jesus is somewhat of a God (bet that joke hasn’t been said before eh Jesus?) in the community and flew over from Spain for the weekend.

Then Wes dropped the bombshell, he wanted us to present Nightscout, not just give 1-1 advice and info at a stand. Present! What? Me? “Erm, okay” I said very tentatively. Being on holiday for the Saturday I could sadly only attend the Sunday but the planets aligned as that was the day the presentations were (“Oh great!”).

Panicking about presentation slides

At 5am the alarm sounded.
I present often at work and am somewhat reknowned for having whizzy slides full of colour, animation and more importantly eye-distracting graphics which take the focus off of me, but I had a problem as I would have no time to prepare anything as I was on holiday. So at 5am on the Sunday I woke in panic and managed to cobble stuff together and from there on in I felt relaxed, I had a plan, I had slides, I was ready.

A team as one

Nightscout team, anonymousNone of us had met before but after arriving at Windsor and meeting everyone I felt like this was a team which had been together many times, we were so relaxed together, sharing jokes, poking fun, and just understanding everything each other was talking about.
Our first task was to decide who was doing which bits and I found myself volunteering for a lot more than I thought I would. Perhaps I wasn’t so nervous after all.
Wes posted a photo: we were no longer anonymous.

Morning presentation – What Nightscout means to us

The morning session wasn’t advertised in the programme, just on flyers at our stand so we had less than 20 people there, but that was great for my first foray into public speaking. I’ve always felt that if anything I say or write opens the eyes of just one family then I’ve done my job because I know that family will open the eyes of another.
Due to enthusiastically overrunning our slide timing the session really turned into a What Nightscout Means To Us presentation.

Nightscout, Wes opening speechWes opened the presentation with a heartfelt introduction to Nightscout and what it mean for him, it was very moving, speaking about how his son’s T1 diagnosis at 12 months affected the family.
Kate spoke about how Nightscout “makes the diference” and spoke of how the “glanceability” of her glucose readings on a watch reflects what her driving instructor told her “nothing should ever come as a surprise in your rear view mirror”, she’s aware of what’s happening before it escalates into a difficult to deal with hypo or hyper.
Jesus’s story to me is amazing. He’s a parent but he is the T1 and he developed software for himself to monitor glucose readings. One day he heard John Costik’s Nightscout story and within an hour sent him an email to let him know that Jesus could get readings from Medtronic Veo CGM and could amend it to work with Nightscout. I can’t begin to tell you how moved I was by Jesus’s story of selflessness.
Tim’s story was another good one, speaking how great the community is and how Nightscout has pushed the boundaries and helped Dexcom release Share ahead of its original plan. Having Type 1 for 32 years he had a Dexcom receiver but built an xDrip and is pleased to realise the much better calculation engine than that available in UK Dexcom products, with the added bonus of extended life sensors. (USA has the ‘505’ software and Share but this has not been released in the UK.)
Stuart spoke about how Nightscout lets him know “at a glance whether to react or relax”, which along with Kate’s “glanceability” sum up Nightscout very well for me. With his daughter being 13 she is starting to manage her own diabetes and diabetes allows Stuart and his wife to pull away more and only intervene when required, meaning his daughter finds it less intrusive.

My presentation: BG’s are not as important as Snapchat or 5 Seconds of Summer

Nighscout FFL, Kev talking about watchesWhen my turn to speak arose I felt calm, I just wanted to get my story out there, I was somewhat surprised I wasn’t a bag of nerves.
I spoke about how to a teenager almost nothing was more than important the weekend lie-ins and that Nightscout means I’m not worried about whether she’s too low or too high when her bedroom door is closed till noon.
“BG’s are not as important as Snapchat and 5 Seconds of Summer” was my next line. Amy wants to be a teenager and do teenagery stuff like listening to her music and chatting online with friends, probably about the music they’re listening too…and boys…and boys who are in bands…like 5SOS. I mentioned that whilst cooking I can glance at my watch and decide whether I need to intrude on Amy to ask for an early BG check so we can pre-bolus, or adjust to get her at the lower end of her range before eating. Like Stuart’s daughter this is less intrusive for Amy than before Nightscout.
I explained how I use Nightscout to “nudge” Amy. With my range set from 3.5-14mmol and Amy’s set from 4-9mmol (her choice) I know that she would have had an alarm if over 9 but if she reaches 13 for example it’s probably because she’s not noticed an alarm, so I give her a gentle nudge to do a check or make an adjustment.
My key message though was how Amy’s HbA1c’s had changed through her time with Type 1:
hba1c history

Nightscout and how it works

Nighscout FFL, Kev, nightscout reportingKate went into the basics of Nightscout, the website, the browsers and phones and what appears on the screens and gave an overview of CarePortal. CarePortal is where kids and school carers/nurses can enter information about carbs, insulin and many other things into Nightscout which can then immediately be seen by the parent/carer, which in turn means that worries about Hypers may be negated if the parent can see insulin has been given, meaning in turn no panicky phone calls to school.
Stuart expanded on this talking about the ‘pills’ which appear on the screen and show you values such as Insulin On Board, Carbs On Board, and the Bolus Wizard Preview, which based on settings you’ve entered gives you an idea what sort of action might be required to get the child back in range. Stuart stressed that this is only for an idea of what to do and shouldn’t be used without deciding on whether that action is appropriate or not.
Nighscout FFL, Kev talking about watchesI presented about the reports Nightscout gives, comparing them favourably to Diasend which I rarely use now. One report gives you an estimation of A1c and ours said 6.8% prior to the last clinic when Amy got her 6.7% result.
Just for fun us Pebble watch users decided to do a speed test with Wes and his Apple Watch, to see how quick we could all glance out our kids’ glucose level. It took Wes a fair bit or time.

Finally

Finally, it was lunch time, and as the engaged audience left the room I knew the team had done a good job and we eagerly awaited the afternoon session which would include presenting solutions and a workshop where we could solder some bits or help get people going with their Nightscout solutions.

Pop4Diabetes 2015 with DRWF

pop4A couple of weeks ago Jane and I were invited to attend the Pop4Diabetes ball as a thank you from DRWF for things I’ve done for them. Claire and Lee from DRWF hosted us for the evening, alongside other volunteers such as Lynwood who does a lot of fundraising and other events for them.

What made the evening more special was that my Dad and step-mum Liz were also invited by Claire and Lee. My Dad has had Type 2 for quite some time but it was only Amy’s diagnosis which spurred me on to learn more about his Type 2 and ultimately to get him to learn more about it. Since the DRWF Wellness Day in 2013 Dad has volunteered for DRWF, helping them with mailshots, poster deliveries and many other things. He’s given a good deal of time helping out for the good of others so it was lovely to see him be invited to attend the ball too.

Pop4Diabetes is an annual ball like event, spearheaded by Iris Board who’s son Shane was diagnosed with Type 1 Diabetes several years ago. Shane is an actor/singer/presenter who has released various Type 1 oriented songs over the years, including the recent Find A Cure.

The event is frequented by celebrities past and present and this year Anita Dobson – Angie from Eastenders – was there supporting the event, along with internet star Jack Jones.

Music and dancing is the theme behind this event and it was great to hear songs from Shane and others, as well as songs and dancing from Naomi Bowring, a talented dancer/singer and Miss England candidate. There was dancing from local groups, some made up of adults only, others made up by kids, as well as a type 1 choir who sang a song.

Pop4Diabetes also gave out some awards to a few kids with Type 1 who had achieved good things over the years. It was lovely to see the smiles on the kids who received these awards and the pride beaming on theirs and their parents faces.

I really enjoyed the event but for me the highlight was being able to spend some time with DRWF and their supporters, and especially being able to chat all night with Lee (DRWF), chatting through all topics Type 1 related.

Pop4Diabetes was a great event, Iris has done well to pull it together and raise thousands of pounds yet again for charity.

The Bournemouth Echo did a nice write up about this year’s Pop4Diabetes event if you would like to read more.

Cycling from London to Paris for INPUTDiabetes – How it went

London 2 Paris Logo + Input LogoWhilst the cycle ride from London to Paris had nothing to do with Type 1 Diabetes as such I was raising money for INPUTDiabetes so here’s a little bit of information about how it went.

Fundraising

Initially I set a target of £320, one pound for every kilometre of my trip. This seemed like a good idea for me as I guessed I’d have some tired dark moments where it would be an effort to turn the pedals and the thought of raising another pound for just one more kilometre would spur me on. Luckily this never happened.
Initially the uptake for sponsorship was slow and I was worried that I wouldn’t even make £100 but towards the event itself sponsorship poured in and exceeded my target.
I raised £511 which will turn into £623.75 including GiftAid.
A key thing is that I never felt under pressure to raise this money, I didn’t have to pressure people to donate just so I could reach a target set by a charity, as is the case with organised London to Paris rides. These targets are generally £1500 minimum sponsorship for a trip like this.

How much did it cost?

£200.
Yep, that’s all.
If I’d gone on an organised event I would have still had to pay £100 up front.
The price included all travel costs, all accommodation costs and some food but not all. It doesn’t include any extra bike bits (pannier, rack) or clothes you might need to buy.

How did the trip go?

Honestly I don’t think the trip could have gone any better: the routes worked and we never got lost; our bikes didn’t break; the accommodation was superb; we all had a great time.
One unknown for me was how I would feel on days 2,3 and 4 having to get up and get back on the bike for several hours. Each morning though I woke up fresh and ready to get cycling again, excited about that day’s ride.
For more information take a look at the new blog I created all about the trip, particularly the Trip Reports area.

Fancy trying it yourself?

If you can cycle 50 miles at 10mph you can do this trip too. None of us trained to be able to ride the full distances day after day – see this training page for more info – and as you’ve got all day to cover the distances the pace can be quite slow.
I’ve created a new blog which details all the routes, the planning, the costs and reports about each days’ rides here: London to Paris Cycle Ride.

Dr Ponder’s Sugar Surfing Workshop at the JDRF Discovery Day

Dr Ponder's WorkshopIt’s taken me a lot longer to get started on this article than I would have liked but actually it’s done me a favour as Julia has already written a brilliant blog all about it, so I’d suggest you have a good read her article Sugar Surfing with Dr Stephen Ponder MD

So I won’t repeat what Julia’s written but just talk around some of the rest of the event…

The most eagerly awaited Discovery Day?

Over the last few weeks the buzz around last Saturday’s JDRF Discovery Day has been getting stronger and stronger, everyone excited to meet Dr Stephen Ponder in person and listen to his introduction to Sugar Surfing.

On Thursday after I’d interviewed Dr Ponder for Diabetes UK he asked me what to expect at the event and I told him:
“There’s a long waiting list for this event, people are travelling hundreds of miles, some are coming from France just for the day, Twitter and Facebook are buzzing. I expect that you won’t hear a pin drop during your presentation.”
He told me he was excited to be able to present to all of us.

Blasé about travel time

In true Winchcombe style we were running late which annoyed me as I had so many people I wanted to meet and chat with. I blame myself, this was my third time in London this week and it’s “just up the road” (80 miles).
This was the only downside to the day, I wish we’d left earlier so I could spend time chatting with people like Helen & Andy and especially Kevin and Julie as they’d both travelled from France – not together I hasten to add, just to dispel any rumours 😉

A Discovery Day like no other

On arrival we had to sign in, nothing unusual there, except we were in a long queue and there were hundreds of people. Immediately I spotted a few familiar faces whilst I looked around for those I’d been dying to meet; Kevin, Julie, Helen and the legendary Dave Berry. (Dave’s a legend amongst us Diabetes Dads on the CWD UK Dads Facebook group)
I’m sorry to all the people who came up or called out ‘Kev?’ if I didn’t recognise you immediately but my mind was a whizz playing a nanosecond game of ‘Guess Who?’.
In all honesty I really needed this Discovery Day to have about fifteen 30 minute coffee breaks in it, just to have time to talk to people.
It was a delight to hear the joyful screams of people who met for the first time, after keeping each other company through the dark times and middle-of-the-night glucose checks.
This is one hell of a community.

Before the start

I milled around chatting to some online friends I’d never met before, before I spotted Dr Ponder who was busy book signing. ‘Kev’ he said ‘how great to see you again’ which I guess means my interview with him a couple of days before didn’t go badly. Before he had chance to introduce me to his co-author Kevin McMahon they were all called in to the hall as everything was just about to start.
Luckily I found time to have a good chat with Kevin during the main interval, he’s a truly outstanding character with an all encompassing knowledge which stretches far further than mine and I’m a little envious of his endorsement from Scott Hanselman on LinkedIn. I wished we’d had more time to chat.

Feeling sorry for the first speakers

JDRF Discovery Days always have a couple of people speaking before the person who does the science bit and normally this works well but this time I felt sorry for them as in the nicest possible way the audience’s silent ‘Get off’ was deafening.
Elle Dormer was introduced and she spoke about how she had found Dr Ponder online, instantly connected with what he was saying, then attempted to get JDRF and Diabetes:UK involved. I’ve never met Elle before but I imediately took a shine to what she was saying and how she felt, that was until she had a dig at D:UK, I ain’t got time for that, it’s a pet hate of mine and others, because I know that they are the only charity truly able to provide personal support & assistance with school / legal issues for people with Type 1. I know that D:UK, due to personnel issues, had dropped the ball on this one and feel quite bad about it, perhaps Elle didn’t know that though.
Elle, if you’re (still) reading this can I personally thank you for all you’ve done to organise the events for Dr Ponder. You’ve done the community proud. Thank you.

The Sugar Surfing presentations

As Julia’s documented this so well please read her blog for more information: Sugar Surfing with Dr Stephen Ponder MD.

The ultimate way forward?

After my interview with Dr Ponder – or Steve as I like to call him now – on Thursday I was already totally sold on this being a good way forward if Amy chooses to want to do it. That’s why I took her there, so that she could find out information about other ways of dealing with her diabetes. For the record she didn’t really want to go, she had a million other things she’d rather do, as is the way with teenagers, but she went and learned quite a lot. On top of this it reinforced that the things she was doing already were good.
As a family we’ve looked into lower carb eating to minimise glucose spikes and it’s easy to see that it doesn’t suit Amy as a full time way of eating, therefore I see Sugar Surfing at the next best thing. In fact it’s clear to me that a relaxed combination of the two is a very good (but not the only) way forward.

The post-presentation buzz

So many people I spoke to at the event or online afterwards have said how much sense it all made, how there were doing some or all of the stuff already, how they can see that with only some minor changes their kid’s or own hBa1c’s could improve…although obviously whilst that’s a good measure it’s not the be all and end all.
I get the impression from some that they learned nothing, that they did all of this already and that’s great as that means they’ve been Sugar Surfing for some time, that they’ve realised that these little and constant adjustments work well.
For me Sugar Surfing tells us that it’s okay to do this, that we should experiment, that we should approach diabetes management with an agile mind, that we should find what works for us, that we can always learn and improve.
More importantly in confirms that concrete thinking is not the way forward.

Thank you

I’d like to personally thank Team Ponder (Dr Ponder, Kevin McMahon, Patsy, Mackenzie and others) for doing everything they’ve done to get Sugar Surfing in print and for the presentations given on Saturday.

And finally

If you’re interested in learning more about Sugar Surfing please visit SugarSurfing.com and join the Sugar Surfing UK Facebook group which James set up on Saturday.

A slidedeck similar to Saturday’s slides can be found here: Sugar Surfing Master Slide Deck August 27

Talking Sugar Surfing with Dr Stephen Ponder

What a week

duktweetIt’s been an amazing week of privileged invites and questions of ‘why me?’. Firstly, along with Amy I had the opportunity to be part of Dr Partha Kar’s session on transition at the National Paediatric Diabetes Team Meeting in Birmingham and yesterday I had the huge privilege of interviewing Dr Stephen Ponder on behalf of Diabetes UK. When Ruth, my Diabetes UK National Peer Support Manager, asked me if I’d be interested in being part of this I initially thought of refusing, surely there’s other peer supporters more suited but after a while I realised how suitable my experiences and knowledge were. So with nervous ‘Yes’ I signed up.

Meeting the team

Almost immediately my worrying mind was put to rest as I found out I’d be doing this with Diabetes UK National Care Advisor Chris Headland who’s a driving force behind the very successful #Type1Uncut team/videos.

Thinking of some questions…or rather sub-contracting the job

I’ve known about Dr Ponder’s Sugar Surfing for some time and have seen many posts on the Facebook page. Yet when faced with getting some questions together for the interview I felt I knew precious little so I turned to a friend from the Diabetes Online Community, Carolyn, who’s son has attended Dr Ponder’s Texas Lions Camp. Carolyn’s suggestions were great and with a few alterations formed the basis of much of the chat with Dr Ponder.

Obviously too excited

With the interview due to start at 11am I arrived a little earlier…about 2 hours early, I guess I was quite keen. Meeting Chris for the first time was like greeting an old friend, then all the Diabetes UK team and finally Dr Ponder. We chatted for a while about what we intended to do and what would happen next and afterwards just to make sure Dr Ponder was happy. He was.

Dr Ponder and me

A chat amongst friends

“Interview” seems like such a formal word, everyone seemed so relaxed I’d say it just felt like a chat between friends, with two friends captivated by every word their more worldly-wise friend said.
As Diabetes UK are going to release information and hopefully video footage with the next weeks I won’t go into detail about the questions we asked nor the answers Dr Ponder gave, just watch this space for more information.
Part way through the chat Carolyn tweeted to Diabetes UK and I made Dr P laugh when I asked D:UK to reply with a firm ‘No, we’re keeping him’.
carolyntweet1
Before I knew it two hours had flown by and it was sadly time for our chat to end, although Dr P and I kept chatting for a while longer.

Dr Ponder

I think I’m a pretty good judge of character, I can spot an idiot mile off, self-centered people last minutes before I discount them, people with ulterior motives can’t hide it for long. On the other hand the good folk out there just leap up in front of my eyes.
I could be wrong about this but I’m willing to stake my neighbour’s house – not mine just in case I’m wrong – on the fact that you’re unlikely to meet a nicer chap than Dr Ponder.
He seems to have spent an inordinate amount of time trying to make other peoples’ lives better and now with Sugar Surfing he appears to be branching out worldwide.
Of course none of this should be any surprise to me as Carolyn has been saying this for ages and I judge that she’s a pretty good judge of character too.

Sugar Surfing

(For some actual information about what Sugar Surfing is check out these slides.)
As Dr Ponder explained how Sugar Surfing came about I found myself nodding with every word and it soon became clear that this was something we’ve been waiting for. Yes, we’ve been doing things like pre-bolusing, super-bolusing, microdosing, microcarbing occasionally for a while but all by trial and error – mainly error. Amy has previously under her own steam bolused for dinner and waited until at the lower end of her range before eating.
Chatting about the lag of CGM, the lag of insulin, the working time of insulin, watching the CGM curves to bottom or top out I realised we were a family that could probably jump straight in to try Sugar Surfing for real.
Here with the Sugar Surfing book in my hand we had a training guide that no-one had offered us before.

It’s time to start reading that book but not before tomorrow when I have the pleasure of attending the JDRF Discovery Day in London and listening to Dr Ponder for a few more hours, something I’m really looking forward too.

A date with the healthcare professionals at the Lilly conference

The stage at the National Paediatric Diabetes Team Meeting
The stage at the National Paediatric Diabetes Team Meeting

Hoist by my own petard

Last year Amy took part in Dr Partha Kar’s Q&A session at the Lilly National Paediatric Team Meeting in Birmingham. I didn’t think she’d be interested in doing it so I impressed on her how much of a privileged invite it was; how doing it would be good for her; how much more confident she would afterwards. Those words came back to haunt me when Dr Kar asked us again, but this time wanted us both on stage. Amy said, “Dad, it would be good for you, it’s a privilege to be asked” and so on. I sometimes hate that her memory is so good.

At 10:15 our chauffeur arrived and us whisked up to Birmingham where we met Rebecca (who has Type 1) and her partner Jack, both of whom were due on stage with us, not that Jack seemed to know. Partha called, he was running late, to prep us with the plan for the event. But first it was time for lunch and a lovely chat with Francesca Annan who’d popped out of the conference to come and see us, as she and I had been chatting online since last year’s event. After lunch we headed off to be mic’d up, bumping into Dr Fiona Campbell who thanked us for coming up to the conference.

Session One – Ask The Experts

The first session saw Partha ask a panel of experts and the audience of paediatric healthcare professionals about their patients transitioning to adult care but there was an imposter on stage, me. I was so nervous being on the stage in front of everyone, under the bright lights, that when it became my turn to introduce myself all I got out was ‘Hi, I’m Kev, I’m just a Dad, a Diabetes Dad’. A pretty crap intro but actually maybe it wasn’t, after all I had role as an expert I merely do my best to help Amy through her condition.
Partha asked the experts about the issues with adult care before coming to me to ask how I felt about what I’d just heard. “Horrified” I said, no-one seemed to have any faith in adult services in their own hospitals, let alone others. How could this be? Partha asked for a show of hands to confirm this and all hands remained down. Shocking.
I got carried away listening to the eloquent Doctor talk about how adult and paediatric care needs to work together to ease transition as he asked the experts what they would like to say to adult service. My mind was switching thoughts about whether to say ‘communicate way before transition’, ‘work jointly with paediatrics’ or something else. When my turn came I settled for “We’re staying in paediatrics, Amy will stay 14 forever”. It may seem a strange thing to say but it seems that as soon as kids transition to adult care everything they get now disappears and no paediatric team has faith in their adult team. Shocking, really shocking.

Amy on stage at the Lilly National Paediatric Team Meeting

Session Two – Ask the Patients

With session one over I was joined on stage by Amy, Rebecca and Jack, all looking far more comfortable on the stage than myself, who at this point was gasping for a drink of water.
Partha discussed with the audience how the Portsmouth teams work together to ease transition for their youngsters, how they get all the young adults transitioning together and take them into one session whilst their parents go into a separate session.
First Partha asked us all how we felt about the care received and the response was favourable, it seemed we all thought the care we received was good on the whole, although it wasn’t all a bed of roses. It was interesting hearing Rebecca talk about the care she received and Jack talk about what it was like to be a partner of someone with Type 1.
Coping with transition was the next topic and Partha asked Amy if she felt she was ready for it. “Yes, I think so” replied Amy before I followed up to ask her if she felt she was educated enough – Diabetes-wise – to be left to her own devices. Although she felt she would be okay I pointed out that it was not the paediatric team that taught her those skills it was Jane and me, just like other parents do for their kids.
At one point on stage Partha joked about me being “SuperDad” which has since stuck when Amy feels the need to mock me about something. I must admit to prefer the nickname from last year “Sideshow Kev”.

Amy and me on stage

It’s a wrap

Straight afterwards a relieved Amy and I headed off for a large piece of cake each and I made quick work of a post-stage beer.

Final thoughts

We feel quite privileged to have been invited and we’d both do it again.
I’ve learned that answering questions in front of an audience is nervewracking but as no-one knows my story better than me there’s no need to be that nervous. However ad-libbing an introduction is not so easy.
Health care professionals are generally lovely people: from our chat with Francesca to our chat with Dr Campbell to our trip home with Partha, everyone made us feel so welcome, at ease and wanted.

DISCLOSURE
I’m a big fan of disclosure so here goes.
We were paid nothing for this, we took no gifts, nothing.
Ah, well, apart from the beer (me only!), the cake, the lunch and being chauffeur driven there and back.
Lilly and Partha gave us something far more valuable though: the chance to tell our story and help the future of people like Amy when they transition. I’m very grateful for this opportunity.

The German exchange trip – Amy nails it

On Tuesday Amy, now 14, started her exchange trip with her school to another school in Germany, somewhere. As a parent I should actually know where she is but I guess I’m a bit more relaxed about this trip than I realised.
This blog was meant to be just about the trip but it’s turned into a congratulatory one for Amy, who’s doing really well managing by herself. I’ll kind of apologise for this but at the same time I’m incredibly proud of how she’s managing.

The trip

Amy’s been studying German at school for a year or so and on the face of it she is very good, getting A and A* results in exams. She’s staying for a week with a lovely family whose daughter will be staying with us in a couple of weeks and luckily she is very good at English as I know no German.
The school have organised all this, along with the host school organising a week long set of activities and fun events.

Never a doubt

There was never a doubt whether Amy would go on this trip or not, diabetes was not given a passing thought from our side, nor Amy’s, nor the school’s. It’s so refreshing to look back and realise it was never a thing, especially after hearing horror stories of kids not being allowed to go on school trips, some only being told at the last minute.

The Type 1 worries

Whilst Type 1 never featured in the decision making process about going on the trip, Amy, Jane and I felt that we should ask the school to see if any of the German kids have Type 1 and would like to stay with a family who were used to living with Type 1. Amy is more than capable than managing her diabetes on a day to day basis and she thought she could help any of the German Type 1 students if they were worried about coming to England and going it alone themselves. It was a lovely touch from Amy but we’re glad the German school has no kids with Type 1.
We did wonder if Amy’s host family would be worried at all but they raised no concerns once they found out about Amy having Type 1. I think they’re happy that their daughter is coming here as she has daily injections to do and the family will know we’ll be okay with helping her.

Helping other Type 1 kids

Of the English kids going there’s a boy who Amy doesn’t really know, let’s call him Harry*, who’s also Type 1, much more recently diagnosed than Amy. Amy thought Harry would prefer to stay with a Type 1 German family so whilst setting out to find out if there was a German student with Type 1 she was always going offer that family to Harry first. Another nice touch.
At the one and only meeting about the trip we stayed behind to discuss a few Type 1 things with the organiser and heard Harry’s mum nervously asking questions about the trip, worried about how her son would cope if anything went wrong. We’d never met the mum before, Amy didn’t really know Harry either, but she jumped up and said, “It’s okay I’ll give my mobile number to Harry and he can call me if he needs help in Germany”. She then explained that she was confident with carb counting, adjustments and day to day management and that the mum needn’t worry. Proud Dad moment.

So how’s it all going, glucose wise?

Amy uses CGM (Continuous Glucose Monitoring) on and off and is using it in Germany, on top of that we use xDrip and Nightscout for night time. We had decided to use it for Germany so that I could help Amy with her recent-ever-changing-basal-requirements but between lack of WiFi, phone 3G problems and being relaxed we’ve not actually worried about it. It was Amy who got it set up in the end and it was two days before I actually looked at the data so it was pleasing to see how well she is doing, without asking for advice or worrying or letting it stop her.

Germany NightscoutNightscout graph sample over 36 hours

From the 36 hour trace above, Amy’s averaging 6mmol/l, with maximum of 10.8 and a couple of hypos of 3.0 and 2.9. Not bad considering she was at a theme park and estimating carbs has been a challenge at times.

* some names have been changed to protect the innocent 😉

#PWDC15 – The People With Diabetes Conference – The Sessions

Diabetes conference poster2015In the last post about PWDC15 I wrote about how I felt about the day and how it all started; in this post I’ll go into the sessions.

My main focus would be anything parent or carer related, diet related and teenager related and of course if I could match that up with some cycling talk that would be great. Within a couple of seconds of staring at the agenda I knew my first two sessions:
          Session 1 – Partners’ Moan, hosted by James.
          Session 2 – D in Teenagers, hosted by Marianne.

At some point I hoped to attend either the Food / Diet / Issues session or Low Carb.

pwdc15 agenda

Session one – Partners’ Moan

In fairness I was having too much fun chatting with people face to face so I totally missed the start of James’s Partners’ Moan session, rocking up late when there was no seats left, but luckily my wife let me share hers.
I’ve known James for a while and wasn’t surprised that he proved himself to be an excellent session host, with many things to ask and many (, many 🙂 ) things to say. The topics were varied and almost everyone in the room was engaged with the conversation touching all areas of living with someone who has diabetes.
It was sad to hear how some people – like me occasionally – have trouble sleeping because of worries about night time hypos for their partner/child and I offered a couple of ideas how to make things easier.
Some stories were funny, some were sad and others down right worrying and some very, very good points were raised by all. I found James’s thoughts particularly interesting, although in the interests of confidentiality we’ll keep these secret between the session attendees, James and his wife.
I realised part way through that there were two Type 1’s in the session but I’m really glad they came as it gave us carers/family a really good insight into how they see things; I’m pretty sure they also got a lot out of it.

Session two – D in Teenagers

In what turned out to be a theme for the day I was (fashionably?) late for this session.
I was pleased to see my wife Jane already in there along with friends Karen, Rachel and Marianne who I’d met for the first time earlier that day, after years of chatting on Twitter and Facebook. Another chap named Nick was there, he’d had Type 1 since an early age – it turned out I’d cycled with him last year in the inaugural TeamBG Cycle up Box Hill.
I’m so glad Rachel and Nick went to that session as without them we would have just been a few parents with still unanswered questions. Their stories whilst maybe a little worrying were evidence that things don’t need to always be spot on to turn out well in the end.

Lunch and time for Amy to shine

Vicki's picture of the xDripLunch-time came far too quickly but gave another opportunity for networking, saying hello to more people I knew from Twitter and Facebook, like chatting with with Rhodri and talking to Paul S about my recent work on xDrip, seeing Amy & Emilia quite relaxed whilst chatting and playing games with people they’d never met.
That for me was a lovely thing of the day, where people felt at ease to go up to Amy, introduce themselves and chat about stuff. Like Vicki who chatted with Amy about xDrip, and others who asked her how she felt about being ‘stalked’ with xDrip – for the record she doesn’t mind too much. Hey and look at that on the picture, 5.1, nice!

Session three – Low carbing (and a bit of cycling)

LCHF-dekal
…if you want to

Guess what, I was late for the start of this one too.
This session was hosted by Sacha, another cyclist I met on the TeamBG Box Hill ride last summer. We’ve bumped into each other quite a few times online since, especially in the low carb arena where he’s gone from strength to strength. Also in the session was Rachel & Andrew whom I’d met before and amongst others was Jeff who I’ve known for a while but never met before. Some guys from the sports nutrition company Torq were also there.
Sacha started the rounds asking people to say how many carbs they consumed a day on average and numbers ranged from 150 to 20, with the guys Torq stating that it wasn’t worth asking them, on account of the number they consume. Interestingly most agreed that the carb count shouldn’t normally include any sport fuelling for long rides. Discussions were had on foods that work, foods that don’t, tips and tricks – such as Jeff who goes for snacks of Pecan Nuts as “they’re cheap in Lidl”, in contrast to Sacha’s (and my) Macadamia Nuts which certainly are not cheap in Lidl.
I asked if anyone drank Bulletproof Coffee and kind of wish I hadn’t when I described it and saw the look of horror on their faces. I initially came back with a ‘it’s not as bad as it sounds’ before agreeing with Sacha that it was an ‘acquired taste’.
I really loved this session as I have never felt at ease talking about LCHF on Twitter or Facebook due to the fact that I’ve faced abuse because of it. In this arena we all shared the same aim and belief and it was good.

#PWDC15 – The People With Diabetes Conference – The Day Starts

Diabetes conference poster2015On Saturday I had a brilliant time attending the first ever conference for people with diabetes, run by people with diabetes.
Its concept was a gamble, running several simultaneous chats based on an agenda only compiled at the start of the conference, by the people attending the conference.
Did the concept work then?
Hell yeah!
In fact it’s hard to imagine how it could have gone much better (although of course I have a few suggestions, post to follow).

Thank you, thank you, thank you

To all in TeamBloodGlucose, especially Midge, Paul and Rebecca, thank you so much for creating, hosting and subsidising this event. I’ve always respected the work TeamBG do, even more so now.
You gave everyone who frequents any of the online tweetchats and multiple Facebook groups the opportunity to meet face to face after years of chatting online.
Whilst I’ve met lots of people the opportunity to meet people from the other side of the country, like Lavinia and Jeff, in a central(ish) location was great.

The event starts…prepare yourself for some name dropping.

Arriving in MediCity I bumped into Nick (@t1diabeticbiker) and Ingrid, then straight into Jules (@Jules1315) and her family. Inside the venue I didn’t know where to start, who to talk to first. The lovely Lavinia came up for a hug and a chat, followed by Alan (no hug 🙂 ) and then Phillipa, James and many, many more.
Taking our seats and bumping into Sam (@sam_dysch) whom I didn’t recognise I sat down next to someone I didn’t know, except I did – although I didn’t realise at the time – it was Allan (@Nyadach) who only a few days before had recommended some JDRF-coloured cycling shorts to me. Allan is quite an experienced cyclist, something he’ll need for his unaccompanied-Round-the-World-cycle-tour next year.
Within a few minutes I’d also met Rachel, Marianne, Steve, Suzi, Paul and many, many more. Then Sacha, Andrew, Jeff, Adrian, Lesley, Lis… you get the picture.

Drawing up the agenda

Midge took the stage and welcomed everyone to the event and explained how it would work: we all had pads/pens and we were to spend 5 minutes writing down topics we’d like to discuss that day.
Afterwards people were invited to address the conference and say what they wanted to talk about, at which point Paul wrote down their topic on the list.
Whilst we all had coffee Paul and Midge rewrote all the topics into an agenda for the day.

pwdc15 agendaThanks to Eva Palik for the use of her photo.

I wouldn’t say the day stuck to those times or even the agenda as some sessions merged to discuss other topics, others seems to focus on one part.

 

 
I’ll detail the sessions in the next post.

PWDC15, A Diabetes Conference for PWDs by PWDs

Diabetes conference poster2015The dawn is rising on one of the most eagerly awaited days in the calendars of many people with diabetes (PWDs) in the UK, those that have been a part of the #GBDOC community for many years now, as well as people involved with Team Blood Glucose, who are sponsoring the event.

A little bit of history (as I see it)
#GBDOC was formed on Twitter by Paul Buchanan back in August 2012 and consists of tweetchats which have happened every week since then – Wednesday nights at 9pm until 10pm. The community goes far beyond the weekly chats and there’s now hundreds of PWDs who feel connected to a support group they’ve been missing beforehand and that’s a great thing.
Paul also created Team Blood Glucose with the mission statement of TeamBG inspires people with, and those at risk of diabetes to achieve their sports and exercise goals, to educate people with diabetes of the benefits of sports and exercise and to equip them with the tools to achieve their ambitions..

So why are we excited?
For me it’s simple, I don’t get invited to any of the ‘proper’ Diabetes conferences organised by Big Pharma or the big charities, so it’s exciting to actually get to go to one.
Actually though I’m far more excited about meeting many of the people I’ve spoken with online for a couple of years, some I’ve met before once or twice, some I’ve not yet met and some I’ll no doubt not recognise whatsoever today – people only ever pick their best photos for avatars don’t they?
The list of names is endless, Paul, Midge, Kaz/Max, Phillipa, Rachel, Steve, Paul S, Alex, Bob, Adrian and on and on but there’s one person everyone wants to see today, someone who through everything she’s gone through still makes us laugh everyday, someone who knows the benefit of this community, someone who’s willing to make a very big effort to get to this conference, yep, it’s Jules. It’s fair to say the highlight for many people today will be meeting Jules.

So what’s happening today?
I can easily answer that: I don’t know, no-one knows and that’s the beauty of it.
Today we will arrive, there’ll be an opening presentation or two and then the community will decided what happens for the rest of day.
I’ll not lie, this will be either mindblowingly brilliant, or erm, not. It’s probably the first time this has been done for any subject as part of an organised conference so we’ve got no history to learn from.
I have faith that this will work, the very loose format should mean that people get to do what they want, not what is dictated to them. At risk over over using a word today I think this is exciting.

A blooming big Tweetmeet
Many of you will know that wherever I go I will try and see any of my Twitter followers who are local as I feel it’s important. Mind you, I never get invited back, hmmmm, ha ha.
So if nothing else I am looking forward to a blooming big tweetmeet.

But I know it’s going to be so much more than that.

Diabetes UK Make a Difference Conference 2015

DiabetesUK_final_brandThe Make A Difference conferences are run by Diabetes UK for people who volunteer for them and there’s one for each region. On Saturday I attended my local area’s one in Guildford, it was my first one, it won’t be my last.

I was pleased to see Angie from Southampton D:UK Branch and Helen & Stewart from Seahawks there, along with Raymond from Fareham, all people I’d met over the course of the last year. I was there because of my involvement with the national Peer Support service #TalkToSomeone that I’ve been doing since October 2013. After a few chats with D:UK staff the conference started headed up by Jill Steaton, South East REgional Manager.

Morning workshop: Make The Grade
MakeTheGradeTweetThe audience split up to attend workshops we had all signed up for beforehand, with Stewart, Helen and myself attending the ‘Make The Grade’. As part of it the ‘Hands Up for Good Care in School’ video was shown and brought a smile to my face as I watch Lewis, Andy and Zoe on the screen.

The science bit
There were a couple of scientists there, whose work is funded by Diabetes UK. First up was Lisa HeatherX who spoke about her work looking into how the heart works differently for people with Type 2 Diabetes, although it seems it’s just as valid for Type 1’s as well. I’m always amazed at how well these scientists convey their work to people like me who understand precious little about it; she did it well. Of interest was how muscles in general can be powered by fat yet within seconds of a heart attack in a non-D person the heart switches to use carbs as a fuel source, something it doesn’t do in people with diabetes and something that she’ll be investigating further.
Next up was Chloe Rackham about her research into how MSCs (Mesenchymal Stromal Cells) can help make islet transplants more effective and efficient, a topic I struggled to keep up with. Out of interest she lives with Type 1 Diabetes herself. Islet transplants is a great idea and I’m sure once it’s combined with stem cell growth it will really take off.

An unexpected tweetup
In the Q&A after the first talk a lady from the audience asked a question about ketogenic diets in relation to the news that the heart favours being fuelled by fat, not carbs. Given that I’ve been eating predominantly a Low Carb High Fat diet for at least 6 months now my ears pricked up and I went over to say ‘Hi’ and have a chat. A few minutes into the chat Julie (@julie_unruly) realised we knew each other online (Twitter, Facebook) and had ‘spoken’ many times. It’s so nice to put a name to a face and the chat was a highlight of an already good day.

Afternoon workshop: Safeguarding
I decided that the Safeguarding workshop would suit my role for Diabetes UK, teaching me things to listening out for during the phone calls to help identify people who needed help. With twenty or so in the room we divided into teams and played a game I’ll call ‘is it okay if…’ – which made me smile as a fan of The Last Leg. It was good to see that most of us agreed on whether the topic highlighted a deeper issue or not and I was pleased to be educated by others on the one I thought was okay, but 50% of people did not.

seahawksAnd finally, The Awards
The Inspire Awards are Diabetes UK’s way of recognising some of the amazing volunteers it has and the amazing things they do for the diabetes community. Many people seem to spend all their days doing one thing or another for Diabetes UK or the diabetes community. Take one of the nominees, Angie Whitmarsh: she helps run the D:UK Southampton support branch, she attends many hospital and CCG meetings, she helps out with collections, she goes with D:UK to Parliament for things like the APPG (which took place a couple of days ago) and rushed back from that to attend the launch of a parents and families D:UK support group within Southampton. Yet, with all this and more Angie sadly did not win an Inspire Award; the bar for these awards is clearly very high.
I was really pleased when Seahawks, the South Hampshire families group, won an Inspire Award, as the support it gives to local families is fantastic, truly inspiring. The dedication given by Helen and Stewart (who collected the award) and other committee members knows no bounds and I’m glad that Diabetes UK recognised that.