QiC Diabetes Awards 2016: being a Judge

QiC Diabetes logo“No thanks, it’s not really my sort of thing” I said on the phone a few times to Emma, “but if no-one steps forward I’ll do it”.
Emma was organising the Judges for 2016’s Quality in Care (QiC) Diabetes Awards and was seeking to get a non health care professional (HCP) person on each of the three award judging teams.
No-one else stepped forward.
“Damn it” I thought, never wanting to backtrack on a promise.

QiC Diabetes Awards: a bit of background

The QiC Diabetes Awards is a programme designed to award some of the very best projects, initiatives, people and groups within the UK Diabetes arena. 2016 sees it celebrate its sixth year.
This year they were 11 categories, 8 of which were for projects and 3 were for people. See the list here.
Many of the winners and finalists from previous years are featured on the QiC Case Studies page for others to view and learn from, maybe taking on the initiative/project or adapting it to suit their organisation.

What the judges do

This year the judges were responsible for just 7 of the project categories and these are split across three judging teams.
Bob Swindell, Andy Broomhead and I were the non-HCP people and we each took our place on the teams which were chaired by Simon O’Neill (Diabetes UK), Dr Paru King (Derby Hospitals) and Dr Sheridan Waldron (Children and Young People’s National Diabetes Network) respectively.
Each team had to decide on the winners, finalists and commendations for each category.
My team had two categories to review – of course I’m not going to let on which ones.
After all the applications are finalised they are sent by email to each judge who then reads (and re-reads in my case) each application scoring each section against a defined set of criteria. We received them on 14th June 2016.
You have about a month to do this before the results grids are sent back to the organiser, who collates everything ahead of Judging Day. We had to send ours back by 11th July 2016.
After Judging Day you sit back, relax, and look forward to attending the QiC Diabetes Awards evening which you automatically get an invite to.

Paperwork, paperwork

I was sent an email with all the applications for my team’s two categories, 25 applications.
“Well, this won’t take long” I thought, incorrectly.
25 applications, most of which had 10 sides of A4. I don’t think I was prepared for the amount of paperwork I had to read through, and as someone who doesn’t really read it was all a bit of a shock to the system.

It’s 2016, why did I agree to be a judge this year?

If I’d really thought this through I never would have agreed to be a judge this year, another year maybe, but not this year.
June 2016 saw a month long feast of football in the EUFA Euro 2016 finals.
Early July saw the Tour de France start.
It turns out for me these were both far more compelling than judging applications for an awards programme.

Don’t judge my judging process

I guess everyone’s judging process is different, I’ve never done it before but my process worked for me and I’d improve it if I were ever to judge anything again.
On average I took at least one hour per application and judging it on its merits against the framework proved not much of a problem, but after doing that I needed to make sure it was fairly judged against the others. On the two days where I locked myself away for 6 or 7 hours this was much easier, but with football and cycling to watch this wasn’t so easy.
I made notes about every mark I gave for every section for every application as I was worried about being questionned on Judging Day. Turns out I needn’t have worried so much but making notes helped me through the process.
Finally I’d done them all and emailed Emma my completed results grid, merely seconds before the deadline time. Which was pretty much like my whole life at school.

Judging Day beckons

I was very nervously excited to go to Judging Day, at Chandos House in central London.
As a non-HCP and clearly the least educated person in the room I felt nervous about stating my views, holding my ground, challenging others and being a valuable member of the team.
But this would be the first time I’d ever met Becky or Anne in person, after years of chatting on Social Media, and I was really excited about that. Plus I was looking forward to saying hi to a few people I’d met before: Simon, Andy, Kate, Phil, Mayank and Bob.
The judging day itself was good, fairly low key with great open discussions.
The wine, cider and meal out afterwards with Anne and Bob was even better, even if I did later that evening fall victim to Bob’s mission of upping his step count for his One Million Steps Challenge for Diabetes UK.

Making a difference

My worries about making a difference as a non-HCP were unfounded. My views were encouraged, listened to and respected and I left feeling I’d made a real difference, raising awareness about some things, highlighting inconsistencies the HCPs hadn’t noticed.
I was initially worried about being seen as a representive of others in the community – I’ve seen some pretty negative comments to this effect about others – but I soon realised that I’d been invited myself, not as a ‘patient rep’. Otherwise I’d have refused to join in.

Would I do it again?

Yes, I would, without a doubt.
Along with the caveat of not doing it in a year which features a major football tournament.

DISCLOSURE
No-one had any input into the writing of this article other than me.
I received compensation for my time spent being a QiC Judge, for the hours spent doing the reading, taking the day off for the Judging Day, and travel was also paid for. On the plus side I’ll be using this exclusively for Amy and her diabetes stuff.
I also got a free lunch and Lord knows I love a free lunch, it was a damn fine meal and the company I had was pretty good too.
I also got a no-expenses-paid invite to the QiC awards on 13th October where there’ll be cake and I intend to up my ‘wages’ by consuming vast quantities of it.

T1Resources – hopefully a good place to start

That brief comment Partha made to Mike about discussing a new idea got me intrigued.
“If I can help, let me know” was my reply as we left the TalkT1 event in January.
A few weeks later that idea was discussed between a few of us and so started the project which became T1Resources: a new web site for Type 1 Diabetes information, where linked content would be reviewed by both a health care professional (HCP) and either a person with diabetes (PWD) or a parent of a child with Type 1, like me.
T1Resources.uk

A new idea?

There’s already so much information out there on the web but who knows what is valid, what is inline with clinical/medical advice, what isn’t, what’s just plain wacky and finally what’s that never-going-to-work-Type-1-cure-with-cinnamon.
T1Resources aims to address that issue by having links to useful information, with each link being reviewed by both one HCP and one PWD/parent.

A project with some backing

To work well and be effective this new site would need to get some decent (non-financial) backing, so Sophie – the project lead – started contacting many of the UK Diabetes industry charities and groups such as Diabetes UK, JDRF and INPUT.
So far it’s got the backing of two of the main charities and many of the groups frequented by the UK’s leading Consultants, Doctors and health care professionals. It’s early days so hopefully more will follow.

Reviewing the resources

Each HCP/PWD review is done separately from one another and it is then decided whether or not that resource is added. I’m not going to blog about the process as it’s constantly evolving at the moment.
In short if both HCP and PWD think the resource is valuable it will be added, if both say it’s rubbish it won’t be added. Anywhere in between and the editorial team will step in.
Of course, it’s not quite as simple as that.

Choosing the resources

Initially the team compiled a list of potentially usefull resources, several hundred were reviewed, many were rejected, the remaining were reviewed properly and one by one added to the site – something we’re still doing actually.
But that’s not the vision for T1Resources, the vision is that this resource is for PWDs/HCPs, by PWDs/HCPs, so there’s a page for suggesting a new resource to be reviewed/added. Not all suggestions will be added but each will be reviewed.

A few “thank you”s from me

To everyone involved in this project up to now and in the future, this couldn’t work without a lot of dedication. From the tiniest of ideas to hopefully a very useful web site, I look forward to seeing this site grow.
To Sophie for leading this project and tying it all together, this never could have happened without your input.
To Mike for all your tireless work. I doubt any of us really know just how many hours you’ve put into this, of the work you’ve given up to do ‘just another bit’, to the family events you’ve now doubt missed out on. I love design of T1Resources – apart from the bits I don’t 😉 Hopefully you can put your feet up soon for a little rest.

DISCLOSURE
In my usual Pay It Forward stance all my time spent on this project has been free, same for everyone. Even Mike has paid for the site/hosting himself, although I sincerely hope he’ll be getting that money back soon.

Step-by-step Guide to Soldering an xDripKit

solderxDripKitIf you’re interested in building an xDrip but are worried about soldering all the components and wires together properly then a simpler solution might be to buy an almost ready made xDripKit.

It’s simpler to make and get working quicker, but for me personally I’d go for making my own xDrip from components everytime, they’re not so hard to build and you can make them smaller, or a more suitable design.

Here’s a step-by-step video showing just how simple it is to get an xDripKit device working.

DISCLOSURE
This video has been made without any knowledge or involvement from Steve, the seller of xDripKit. No money, kit or even chat has been exchanged between us.

Nightrider 2016, the Diabetes Dads and the Videos

JDRFDadsLogoShortly after last year’s Nightrider there was a little conversation on our UK Diabetes Dads group. I suggested we should try and get a large Dads team together and immediately got two Yes’s from Nightrider stalwarts Dave and Andrew. Little by little more Dads joined ending up with 23 Diabetes Dads and some friends. In total there were 30 of us riding with 27 of those fundraising for JDRF.

A little motivation & from nothing to everything

Many of the Dads have personally thanked me for organising and motivating them to do Nightrider but the truth is I did very little, they wanted to do this and everyone motivated everyone else, with tales of training rides, pictures of bikes, etc..
A fair few of the Dads didn’t even have a bike and stories such as Vincent’s weren’t uncommon: Vincent last rode a bike on his paper round 25 years ago. Alistair’s story was similar. Others such as John signed up for the 60km ride but soon got persuaded that the 100km ride was achievable.

Lighting up the roads of London

After doing Nightrider in 2014 I knew our large team would get split up so I search for lights for our bikes and found these which I’ve gotta to say looked by far the best lights at Nightrider. It gave us the chance to display multiple images throughout the whole ride, include JDRFs logo, the JDRF/Dad logo I created (see top right) and others such as the Nightscout logo. In my opinion these were the best lights of any bike doing Nightrider.

Team motivation

makereadyyourbikeStrava and Facebook are great motivators, people put up their rides, you see it and feel guilty you haven’t ridden for x days, so you go out for a ride and post it on Strava/Facebook afterwards. And so on.
And on.
With so many of us in the team the rides got longer, the bravado better, the team closer and the jokes worse. Far worse [thanks Vincent 🙂 ]. But it was turning into a great team and forgetting Nightrider we all just wanted to meet up and chat and joke.

Nutter on a bike

My RideLondon 2015 cycling buddy from last year Paul Smart made a heroic decision that to prise hard earned cash away from his friends Nightrider would not be enough. No, 100km is far too easy (!) so Paul planned to ride to London from west of Birmingham, leaving on the Friday and cycling 100 miles to Aylesbury before finishing the other 50 miles on Saturday morning and then taking on the Nightrider that night.
Nutter.
But he did it, in fact he smashed it.
Legend.

25 Lamb Bhunas

ddadscurry
It seemed like a good idea at the time with Lahore Kebab House being a firm favourite of mine and Andrew’s: let’s all meet and have a curry before the ride.
Right now I can realise that a curry before cycling 100km isn’t such a good idea but in truth it went done a storm, especially Lahore’s legendary lamb chops which we ordered 6 plates of.

Nightrider dawns…or rather dusks

Nightrider2016Team groupshotThe curry, or rather the tube to/from had made us late for registration, it was bedlam, no-one knew where to queue up to get their ride numbers and hi-viz vests. Luckily Daniel’s wife Julie went into event organiser mode and sorted us out, thank goodness as we’d never have set off for ages otherwise.
As it was our supposed start time of 11:00pm had turned into 11:24pm.

And the ride?

Well, in short it was brilliant but I’ll let you watch these two videos to find out.
First it’s mine, turn your speakers on….

And second it’s the one shot by David Reid, featuring selfie-idiot me:

A lovely fundraising amount

Finally, the whole point of the ride was to raise money for JDRF and I think we did this pretty well.
My personal thanks goes out to Stuart, Matthew and Daniel for the sheer volume of sponsorship they got it. Amazing effort lads, well done.
DadsNightriderTotal

JDRF’s #Type1Catalyst at Parliament

JDRF Westminster Palace reception. Theresa May, Mims Davies, Amy and Kevin Winchcombe. Copyright John Nguyen/JNVisuals 25/04//2016

JDRF Westminster Palace reception.
Theresa May, Mims Davies, Amy and Kevin Winchcombe.
Copyright John Nguyen/JNVisuals
25/04/2016

It was a surprise when I opened the email inviting Amy and me to attend a Parliamentary reception, hosted by Jamie Reed MP and JDRF. What an opportunity not to be turned down, a chance to educate some MPs in the ways of Type 1 life.

Amy and I decided to make a day of it as going to London isn’t a regular occurrence for us. Arriving at Kew we headed straight for the one and only place on both of our minds, Camden. We both love it there, Amy especially and I made sure I kept my credit card firmly in my pocket, nowhere near Amy’s eyes and all those clothes, boots and all things funky. On the downside Suggs was nowhere to be seen.

Off to Parliament and nervously I waited in the security line wondering how they would react to Amy’s xDrip device, surely they wouldn’t be bothered about a collection of electronic components, with dodgy soldering, wires everywhere? Surely not…hmmm…well maybe. Turns out they weren’t bothered at all and didn’t even ask Amy to explain what it was.

Parliament started with a set change for Amy, then a hypo which took ages to clear and with the thought of standing up for two hours I kind of regretted the 3 or so hours spent wandering around Camden’s maze.

Our MP, Mims Davies, was keen to attend the event, accepting my invite immediately, and it was great to see her again and chat about Amy’s life with Type 1 and some of the research being done. Mims picked up a copy of JDRF’s Type 1 Research Today report published that day, something I’d not had a chance to read yet. Mims is always keen to learn more about Type 1 and Type 2 and that’s something we’re grateful for. Afterwards Mims published a campaign article More Research Needed for Type 1 Diabetes.

We went to get a professional photo done with Mims and the Home Secretary Theresa May was there so we got the chance to meet her. She was lovely with Amy, discussing favourite hypo treatments and how she prefers Jelly Babies to Dextro, which is Amy’s preference.

JDRF Westminster Palace reception. Theresa May, Mims Davies, Amy and Kevin Winchcombe. Copyright John Nguyen/JNVisuals 25/04/2016

JDRF Westminster Palace reception.
Theresa May, Mims Davies, Amy and Kevin Winchcombe.
Copyright John Nguyen/JNVisuals
25/04/2016

CaptureJamie Reed opened the talks with a great line saying we are the people we have been waiting for and how we can make the difference. Nodding in agreement I felt like shouting WeAreNotWaiting but the introvert on my shoulder got the better of me, thank God. Further talks about research which ended with Karen Addington, JDRF’s Chief Executive, who was a pleasure to listen to and brought a lump to my throat when she proudly held a ViaCyte’s stem cell ‘sack’ which is a very exciting development.

I was very honoured to be introduced by INPUT’s Lesley to Professor Jonathan Valabhji (ational Clinical Director for Obesity and Diabetes at NHS England) and as you can imagine I wasted no time in discussing Nightscout, xDrip and the whole DIY movement. He was very interested so I offered him the chance to learn more with a proper demo which I hope he’ll take me up on. I may not like public speaking but there’s something about Nightscout which overrules all that.

The day itself was made so much better given the number of people I knew there, Ellie, Lydia, Helen, Jeff, Lesley and so many more. Meeting Carl for the first time was great and I can’t wait until our team of dozens of Diabetes Dads cycle around London overnight in the Nightrider, it little over 4 weeks. It was lovely to meet JDRF’s Karen, Sarah and Kris again and Sarah did a brilliant job of organising it. I felt we needed several hours just to chat, but isn’t that the way in these Diabetes community meet ups.

The technology is great but the people are just fab.
“We are the people we have been waiting for”
Yes. We are.

Promoting Diabetes UK’s 100Things book, World Health Day, and a short TV appearance

Diabetes DadIn what seems like a millennium ago I submitted some travel tips to Diabetes UK for their upcoming book 100 things I wish I’d known about living with diabetes. I instantly forgot about it until they contacted me to say out of the 1100 total entries one of mine had been picked.

Tip43When you’re travelling or going on holiday, double up on the amount of suppplies you need, split them across two bags and ALWAYS keep a hand on them. (Both of our daysacks fell out the back of a Tuk-Tuk in India just before a 15-hour train ride!)”

I was pleased I got 43, it’s an old favourite Level 42 song of mine, although ’42’ would have been a better number of course.

When the book came out I was pleased to see not only my tip in print but those of friends like Helen and some from celebs like TV legend Phillip Schofield and Hairy Biker Si King. Sylvia from Diabetes UK got in touch and I asked if I’d be happy to promote it, a media article maybe. “Of course, no problem”. The press release didn’t gather much interest except from a local TV channel.
“Would you go on TV Kev?” asked Sylvia.
“Erm, no thanks”. [repeat 100 times]
“Are you sure?”
“Oh, okay then” I relented.
My plan was that as That’s Solent TV only broadcasts in the region so I knew relatively few people would see it, especially if I didn’t tell them when it would be on.

Filming and clip release was planned for World Health Day (7/4/16) which this year was Diabetes related. Shan, the journalist, filmed lots of clips, some of me, lots of Amy and lots of Jane, both of which are far more eloquent than me. We spoke about the travel tip, Amy’s diagnosis, a lot on the DIY tech of Nightscout and xDrip, and Amy gave a demo of her latest gadget the Freestyle Libre from Abbott.

So many clips were shot for the proposed 3 minute clip and I wondered how on earth Shan was going to be able to create something from them, but she said well by focusing on information about the book and Type 1 diagnosis and symptoms. Shan did say later that she hopes to do a second clip featuring all the DIY/medical technology we spoke about.
I was really happy with Shan’s accuracy of information given all the bad press journalists get – due to Daily Mail articles, etc., so well done Shan.

All in all, I’m happy with the overall result although I’m likely to start a new book on video tips* Here’s the video, which in true Winchcombe fashion overran its original time slot by double, it ended up 7 minutes 10 seconds long.

*Kev’s Tips for being on camera
1) Tape eyebrows down and stop yourself from looking like you’re Roger-Moore’s-Eyebrow-Stunt-Double.
2) Don’t ever say the word ‘taxi’ as if the reporter has never heard that word before.
3) Don’t just tidy up the bits of the house you know the filming will take place in. Especially don’t move all the junk in the areas you clean up and put them onto the table they definitely won’t film.

Children’s and Young People’s Network North West Education Day – #CYPNW2016

200?
Oh heck
Oh heck indeed

Back in January after presenting for my first time ever (outside of work) to a large audience of 30 at the TalkT1 event Dr May Ng and I chatted offline about my presentation. I wanted to know how the messages came across, how I came across and how it could have been better, just in case I was to ever present anywhere again. From my point of view I was so nervous it was difficult to gauge others’ impressions.
Then came Dr Ng’s little question: “are you free on 14th March?”. She was organising the North West Children and Young People’s Network Education Day and had a slot for a speaker.
“Yes. Is it for a talk or workshop?”
“A talk. 200 HCPs in Children’s & Young People’s diabetes attending for the annual education day”
200?
Oh heck.
Oh heck indeed.
I was pleased though, as Mike (of http://www.everydayupsanddowns.co.uk/) was going to be presenting there too, plus I’d get to chat with May and Francesca again, plus the chance meet some of the parent reps such as Nicky whom I’ve chatted to lots.
I’d also get the chance to include some Nightscout stuff in there too; just try and stop me talking about that eh?

Flying high on a Sunday

NWCYPsundayThe short flight to Manchester was my first ever domestic UK flight, great fun although I was quite nervous about the following day. Nervous but excited at the same time but somewhat wondering whether I’d regret my ‘yes’ to May two months earlier.
Mike and I had a great chat over a few beers and dinner, amazing that it was only the second time we’d met but it seemed like we were old friends, chatting about all the good stuff our other #DOC friends do, so many great advocates and great people. It was good to chat about some projects we’re involved in, some separately, some together.
It was funny when Mike asked me to double check his carb count of dinner as honestly I had no clue, this being one of the areas of T1 care Amy definitely takes care of herself; my memory isn’t a patch on hers.

A Day In Tweets

Before I continue I just want to point to Mike’s Storify of #NWCYP2016, summarising the day and its presentations via a series of tweets.

Dr Philip Weston

Dr WestonDr Weston’s presentation started with Autonomic Neuropathy and almost lost me within minutes; I feared today’s presentations might be too much for my little brain to understand but actually it was fascincating, and scary, but mainly fascinating.
The audience were asked to test their pulses whilst breathing in and out, and then holding and slowly releasing their breath, with the idea to see if their heart beat was changing. If it doesn’t this *may* be a sign. Read this for more info: http://www.mayoclinic.org/diseases-conditions/autonomic-neuropathy/basics/tests-diagnosis/con-20029053.
The non-HCPs I was sat next to all agreed it was one of the hardest (read: worrying) presentations we’ve sat in on.

Professor Helen Cooper

Helen2Not only leading in her field, Professor Cooper is proof that having Type 1 need not stop anyone and she’s proved this during the 50 years since being diagnosed. I find it wonderful being in the company of people with such experience and each one (Derek, Lis, Pat and now Helen) has a great and happy outlook.
Helen’s slides were gripping and fun, she spoke about learning being essential and said “there’s no end point, you are always working toward improvements”. Slides of landscapes spoke about the Mountains which resembled the high points and valleys which resembled the lows, reminding me that earth is not flat, life is not flat and it made me think about those flat CGM traces we all seek which don’t mirror those a person without Type 1 would show.

Dr Chizo Agwu

agwuDr Agwu presented about Toddlers with Type 1, something I’ve always been grateful we didn’t need to deal with: people often say they don’t know how families like ours cope, well I don’t know how families with toddlers cope.
It really brought it home when meal times were discussed, about how on earth can you give insulin in advance – something many people/teens/kids do – when you’re dealing with a toddler who just won’t eat something. I remember those days well and it was hard enough when we didn’t have insulin/hypos/hypers to deal with.
She mentioned something I’ve thought for a long time: that it is important to screen parents for depression. Absolutely correct, we’re all in it together and if the parents aren’t functioning the team is going to suffer.

Mike Kendall – Blogger, patient, all round nice chap

Mike1Mike is a natural presenter, eloquent, factual, meaningful messages and (sadly for me) too blooming funny: how on earth was I going to have the funniest presentation after his?
Mike told the room what life with Type 1 can be like, what just four blood checks a day means in reality – you’re in the dark for most of it. His analogy of life with T1 being like playing Scalextric with dodgy controls when a third of it is in a tunnel was brilliant, the room was in stitches. I secretly cursed our resident comedian and vowed to never present after him again (joking of course).
Mike went on to talk about things which help people deal with Type 1, such as the gizmos/tech and of course Social Media, which seemed to unsettle a few in the audience.
Mike’s was definitely the funniest presentation I’ve heard in a while. Or in other words…grrrrr 😉

Dr Ruth Krone

KroneDr Krone gave a great talk about the benefits of CGM and gave some real life examples of people who thought their diabetes management was excellent yet spent most of every night in a very long hypo.
She raised a very interesting point given that many are fighting for themselves or their kids to get fully-funded-full-time-CGM: Ruth told us that even where funding is agreed 50% of patients stop using CGM full time within 12 months. That’s staggering, maybe CGM is just unsustainable, maybe alarm fatigue, maybe wearing another device is too much. It reinforced my belief that having the one or two week gaps after every sensor are good for our family’s souls.

Some guy called Kev – clearly an idiot

KevAfter the tea break it was my turn.
I was nervous as hell but actually looking forward to presenting I took the stage.
I’ll go into detail in the next post but in short I gave an overview of Amy’s diagnosis, moved on to talk about the education we received and what I feel is important, and spoke a little about transition hopes and issues. Finally – and way over time – I spoke about Nightscout and OpenAPS.

Helen Thornton

helenDue to my running well over time Helen had little time left, I felt guilty.
She presented an updated web site named With You All The Wa, full of education tools for HCPs and patients, it looked great, it looked like it contained some really useful stuff for all of us.
A key focus was for individualised goals, targets and education; music to my ears.

End of a great day

I’d thoroughly enjoyed the day, even the presenting bit. Getting the chance to listen to professionals dealing with interesting and sometimes tricky subjects was enlightening. I was amazed how much I’d actually understood.
I was grateful for the opportunity – thanks May – to attend.
I was pleased to meet Nicky, Paula, the HCPs I spoke to and chat with Francesca again.
I was sad to find out I’m not as funny as Mike. 🙂

groupshot

Me, May, Mike, Helen

Fat Head Pizza (Low carb, Gluten free)

FatHead (12)

This low carb pizza was given its name from the movie Fat Head, which is well worth a watch if you’re interested in the food industry. You can find the original recipe here. This pizza has quickly become one of the favourite pizzas of many a low-carber. My friend Helen recently posted her version of the Fat Head recipe.

Most often I will make a double-batch pizza, as I did today on a 12″ pizza tray, therefore I would double the ingredients you see below.

NOTE: This article might have been posted on 1st April but this pizza is no April Fools’ Day joke.

Carbs, carbs, carbs

With the right ingredients this should work out at roughly 20g carbohydrates for the WHOLE PIZZA, then add carbs for whatever toppings you’re using.
At a push I could eat one whole pizza, but two-thirds is more my portion-size (and I can eat a lot of pizza) as this is really filling.
But hold on…there’s a lot of protein which may raise your glucose levels…and fat too? If you have Type 1 Diabetes you might need to bolus accordingly for fat and protein.

The ingredients

FatHead (1)

For a single pizza
175g grated mozzarella
75g almond flour
35g cream cheese / Philadelphia
pinch salt
1 egg
passata
grated cheddar
and lots of toppings
For a double 12″ pizza, like I made today
350g grated mozzarella
150g almond flour
35g cream cheese / Philadelphia
pinch garlic salt
2 eggs
passata
grated cheddar
and lots of toppings: 2 chillies, 1 pepper, 6 slices pepperoni, 2 rashers bacon, 3 small mushrooms, teaspoon of fajita seasoning

Step 1 – Mix

FatHead (2)Put the mozzarella, almond flour and (garlic) salt in a large microwavable bowl and mix thoroughly.
If you’re using cream cheese – I don’t tend to – then add it in now.

Step 2 – Nuke

FatHead (3)Microwave in 30 second increments until the cheese is stringy (see right).
For a double batch like the one featured here it took 3 minutes in total to melt the cheese.

Step 3 – Mix in egg(s)

FatHead (4)Break an egg into the mixture – or two if you’re doing a double batch as I did today.
Whisk egg(s) up with a fork and fold in to the mixture.
It will seem like the egg will never get soaked up but it will, just keep going.

Step 4 – Prepare base

FatHead (5)Grease a pizza tray.
No greasing makes for a destroyed pizza when you try and remove it!

Step 5 – Edge to edge

FatHead (6)With wet hands flatten the mixture out, trying to keep its thickness the same throughout.
Use a fork to prick small holes all over the pizza base. Don’t forget to do this!
Place in oven for 15 minutes at 200C (fan).

Step 6 – Prepare the toppings

FatHead (7)Whilst the base is in the oven prepare your toppings.
We’ve had some great conconctions over the years but tonight I opted for a spicy bacon and pepperoni, made up of chillies, green pepper, mushrooms, pepperoni and bacon.

Step 7 – Remove pizza base and curse

FatHead (8)After 15 minutes take the base out of the oven…and then curse yourself if you – like me today – forgot to prick the base in Step 5. If you did forget then expect to see a raised bubble or two, as in the picture; use a fork now to prick the base to get the air out.

Step 8 – Make your pizza

FatHead (9)Spread passata thinly over the base then add your toppings.
Grate some cheese over all the toppings so it melts them all together.
Bearing in mind this whole pizza is made of cheese you may wish to not go overboard at this stage.

Step 9 – Bake your pizza

FatHead (10)Put the pizza in the oven at the same temperature as before.
Depending on your toppings it shouldn’t take long, I did tonight’s for just under 10 minutes.

Step 10 – Check and remove

FatHead (11)When your pizza is done, remove it from the oven and raise the corners of your lips towards your ears. Good job.

Step 11 – Eat

FatHead (12)Enjoy.

Guest blog: #FreeToDream with Abbott’s Freestyle Libre – by Joanne Hallsworth

libre heart

Amy and I recently got an invite to attend Abbot’s FreeToDream event as bloggers but unfortunately we couldn’t attend, so I offered Abbott the opportunity for any of the attendees who wanted to to write a guest blog about their use of Libre or the FreeToDream event.

DISCLOSURE:
Abbott have had no involvement in this article, the words are Joanne’s and only Joanne’s.
No goods/money/services have been received for this article, but in true transparency I can say that Amy will be doing a trial of the Libre and we will blog about that later.

Anyway, here’s Joanne and her story, in her own words…

Our family

Firstly I wanted to introduce my Family. My name is Joanne, I have a husband Graham & we have 3 fantastic kids; Morgan who’s 14, really smart and loves cheer leading; Lily, who is 13 and a competitive gymnast; Archie “the warrior”, who lives and breathes lacrosse and loves being outdoors.
12922428_10207972875292633_1696374679_o

Morgan

12919591_10207972851532039_1219485698_oMorgan scans her Libre sensor

When Morgan was in year 6, aged 10 ¾ she was diagnosed with type 1 diabetes. It was such a shock I can’t tell you! I didn’t even know what diabetes was if I am honest. At the time I was working full time for Northpoint Mortgage Lenders as a mortgage advisor, but the reality of having to learn all about the illness, the demands, the time off needed, understanding carb counting, insulin ratios and all the new technology that went with diabetes, and not to mention the grief of the life I thought it had taken from her.
It was too much, I gave up work to be the best carer I could be and worked hard to achieve the best outcome from anything the hospital would give me. I read everything, I joined a support group and I took every opportunity to make it as easy for Morgan as possible.
I managed to get in some kind of routine after a year, and found we had accepted it and it would not define her. We got her on a pump and even tried Dexcom from the hospital, but to be honest when we took a well-earned family holiday, the alarms nearly drove me crackers!

Archie

12915081_10207972852492063_353426253_oArchie finds it easy to scan his Libre sensor

In June 2012 Archie wet the bed a couple of times (he had been dry since he was 2), I did a quick keytone test as anyone who is ill in my house gets one! But I never expected it to be positive, he was 4+ and a further blood sugar test on Morgan’s meter scarily showed he was HIGH, not even reading what a lab test told us later was 33mmols! My husband was in shock, he kept saying it couldn’t be true.
Archie was scared and by midnight we were in bed in the treehouse at Stepping Hill having those first doses of insulin! He coped amazingly doing his own first jab within 24 hours and I asked to go home straight away the next day so we could process it as a family. The scales were already in play in the kitchen and the double carb counting began.

Trying Abbott’s Freestyle Libre

12896479_10207972851852047_1555823320_oMorgan checks her glucose levels over the last 8 hours

The sleepless nights have been horrendous, if one is high the other is low, I check them about 3 times per night, but it’s OK because sleep is for wimps !!
A friend told me about Freestyle Libre so I instantly read up and liked what I saw. I put my name on the waiting list and hoped for the best.
We were the most excited we have ever been to see the postman when it arrived.
I wish I could say we didn’t love it straight away – because it was so expensive – but we did.
Almost immediately it became a permanent fixture for both children.The knowledge was power instantly. Seeing the graph that was like a mountain range at best, it was a challenge, so I rolled my sleeves up and got stuck in, a bit at a time working out why it was high or low, picking away at it to make it better, taking back some control. We started pre bolusing breakfast a few minutes a day till we lost the spike and just carried on from there.

Money well spent

A recent high point was Archie’s hospital appointment where the consultant looked in awe at the flat night graphs for 5 days in target range and reported that his HBA1c had dropped from 60 to 52 – all the money we had spent had been worth it!
Morgan’s first appointment went well too – HbA1c has dropped from 69 to 62 (7.8%) – she loves the FreeStyle Libre – proudly doing corrections to achieve a better graph and beat Archie!

A quick video of Archie having a new sensor put on

The FreeToDream sleepover at the London Planetarium

12899506_10207972852292058_1159590851_oArchie scans again, it’s so easy

The icing on the cake was a message from Abbott Diabetes Care, saying that Archie has been selected to join an educational sleepover, the first I am aware of for children with type 1 diabetes, at the London Planetarium! I didn’t even tell him I had entered because I can’t even win a cracker! I couldn’t wait to pick him up and tell him. He has always wanted to go to London so even this was a dream come true for him but it was so expensive to take the whole family. So we ordered an oyster card, studied the tube map and off we went.
When we arrived at the Planetarium diabetes suddenly became the new normal, sugar free drinks on top of the table, hypo drinks below, everyone counting carbs and doing injections. The FreeStyle Libre came into its own again as Archie kept me updated with his scans and couldn’t wait to get off with his new friends and join in the fun. The trip to the stars was sensational, I don’t know about Archie but I felt as excited as a 10 year old after that!
The kids escaped to play games and carry out science experiments, and we found out about the problems we may have with teenagers living with type 1 diabetes. It was hard for some to hear but having Morgan, although she is very sensible, gave great insight into the teenage diabetics mind.
Night-time at the Planetarium was no different to my house, we started with a hypo and soon settled after a bit of Lucozade and a sleepy biscuit.

So in conclusion…

The relief of having a 10 second blood sugar with no pain can’t be measured, and I will do anything to keep it for them.
Archie’s FreeStyle Libre has given him freedom to take control over his diabetes. He can play lacrosse safely 3-4 times per week, as with a quick scan and a jelly baby there is no stopping him.
I can do three lightning scans a night spread over 2 bedrooms and get back to bed before the pillow goes cold.
And Morgan can check her blood quicker than her snapchat!
It’s all good here!

Chocolate Brownie Cheesecake (Low Carb, Gluten Free)

I’m no chef so have never really thought of putting any recipes on this site but I’ve made this dozens of times and many have asked for the recipe so it made sense putting it up on Circles of Blue. I’ve also been spurred on by the recent blog by Helen of the low carb Fat Head Pizza recipe I’ve been making for years, maybe I’ll put up my version next.

Being Easter this cheesecake had to feature Cadbury’s Mini Egg per slice, raising its carb content but well worth it.
10-easter cheesecake

First things first, always make sure you’ve got the right ingredients, don’t do as I did. I’d also say that this cheesecake is a great base and regularly we will add fruit toppings to it, although to keep the carb content down single cream is a perfect addition.
This Chocolate Brownie Cheesecake recipe was developed by Carolyn from All Day I Dream About Food, an excellent site for all things Low Carb. Here’s the original recipe.

Carbs, carbs, carbs

With the right ingredients this should work out at roughly 4g carbohydrates per slice (according to the original recipe).
My version above with its incorrect ingredients and toppings was more like 8g.

The ingredients

1-cheesecake ingredients

Chocolate Brownie base:
90g butter
60g unsweetened or dark chocolate
40g almond flour
15g cocoa powder
70g of erythritol sweetener
2 large eggs
dash of vanilla essence
(optional) 40g of chopped pecans or hazelnuts
(optional) pinch of salt
Cheesecake filling:
454g Philadelphia/cream-cheese
60g erythritol sweetener
45g double cream – Elmlea works fine
2 large eggs
dash of vanilla essence

Ingredients options

2-use the correct chocolateIf only I’d checked the cupboards before deciding to make this cheesecake I would have noticed my stash of unsweetened or plain chocolate had disappeared. So a higher-carb substitute had to be used. In theory the darker the chocolate the less you have to use so darker is better in my opinion.
The use of salt is optional, I don’t think it makes much difference.
The use of nuts is optional, I quite like the added texture for the base but it can change the flavour substantially and Amy prefers it without.

Preparing the base

3-cheesecake base mixtureFirst, switch the oven on to 160C (fan) (325F, Gas mark 4).
In a microwave melt the chocolate for 15 seconds until it softens slightly, then add butter and microwave for a few more seconds until you can mix them together easily.
In a separate bowl mix the almond flour, cocoa powder and salt.
In a large bowl beat eggs, then add the erythritol and vanilla. Mix until smooth.
Mix in the almond/cocoa mixture, then the chocolate mixture, then add the nuts (if you want to).

Baking the base

4-base ready to bakeTurn the mixture into a greased 9 inch springform pan.
Shake the pan to get the mixture flat.
Bake for 15 minutes whilst you make up the topping.

Mixing up the topping

5-cheesecake top mixedIn a large bowl mix up the cream cheese until smooth.
Add beaten eggs, or do what I do and push the cream cheese to one side of the bowl and beat the eggs in the other.
Mix throughly the cream cheese and eggs, add in erythritol, cream and vanilla.

A baked base

6-base bakedAfter 15 minutes the base should look like this.
Reduce the oven to 140C (fan) (300F, Gas mark 4)
Let the base cool for 15 minutes.

Putting it all together

7-cheesecake ready to bakeSpoon the filling onto the base and shake pan to even it out.
Place in oven for 35 minutes.

All baked

8-cheesecake bakedAfter 35 minutes the topping should move slightly when you give the pan a slight shake. If it moves a lot put it back in the oven.
Note that the top isn’t flat but it will sink back down.

A finished cheesecake

9-cheesecake finishedRemove from oven and let cool.
Run a knife around the pan to loosen the edge.
Remove pan sides.
Cool in fridge for a couple of hours.

An Easter version

9-cheesecake finishedJust to make this one slightly more suitable for Easter I added one Cadbury’s Mini Egg, adding a whopping 2g carbs to each slice. It had the added bonus of making sure the slices were cut up evenly.

TADTalk2016 – Talking About Diabetes

tad1Once again the Stupid o’Clock alarm rang again and a quick check of Twitter told me that I wasn’t the only one awake and excited that today was the first ever UK day of TED style talks from people who live with Diabetes.

I was going for three reasons.
First and foremost was to meet everyone, some I’d met before, others I’ve spoken to for years and would meet for the first time. I was excited to meet Sarah (the UK’s hardest working Nightscout support person), Rob who’d travelled from darkest beyond and Anne who was one of the speakers. On top of them there were probably another 3 dozen I was looking forward to chatting with. But first it was off to meet (for the first time) Amber who we were giving a lift to – I’d worked with Amber’s Mum for 20 years and never knew she lived with T1 until Amy was diagnosed. 17 year old Amber’s relatively new to the community, go and say hello on Twitter.
Second was to listen to some great talks, four of which were from people I knew quite well from SocialMedia or indeed Real Life.
Last but definitely not least was because I was part of the Nightscout faculty, present there to be on the special stand we’d been allowed to have, to allow us to help attendees understand more about Nightscout.

The talks

Strangely, for a blog about a Talking About Diabetes event, I’m not going to talk about the talks themselves. Others have already done this through their blogs. Here’s Amber’s, here’s James’s, here’s Matt’s and here’s Anne’s.
Saving the last word for one of the organisers of this event, Here’s Dr Partha Kar’s blog.
Instead I’ll focus on Wes’s talk as it’s very dear to my heart.

Listening with a lump in my throat – The Nightscout Story

tad_westalkWes’s Nightscout story started in an unfamiliar way for me, he was taking us way, way back to Picadilly Circus in 1966, the start of events leading to the birth of Lane Desborough who is dubbed The Grandfather of Nightscout – great video of Lane talking about Nightscout here if you’re interested. Lane went on to develop monitoring software which led to the backbone of the Nightscout web sites people like us use.
I already had a lump in my throat, especially because I knew at some point soon in Wes’s talk his story would get the better of him and the rawness of emotion would come through. You could feel it in the audience who at this stage hadn’t quite worked out what Nightscout really was.
willTADWes progressed to the Nightscout story quite familiar to me – due to the presentations I’ve been giving to JDRF, Diabetes and the CYP NW Network – from the beginnings from the “7 guys on the internet” who thought “maybe 50 families” might be interested in setting up Nightscout. Less than two years later 16000 people are in the largest T1 Facebook group in the World, with 6000 more in the 27 country specific Nightscout groups around the world.
Building on the lumps in peoples’ throats Wes gave more reasons why Nightscout is so important to so many people and spoke about the only ‘cost’ to a person taking on Nightscout, that ‘cost’ being to Pay It Forward and help others. From my side it’s truly a great community, everyone is there to help others and everything is open.
Open Source.
Open Data.
Open Hearts.
Wes gave good praise to the UK’s Nightscout Faculty – which I’m proud to be a part of – and to Tim Omer for his excellent work on OpenAPS and HAPP (although Wes accidentally said ‘xDrip’ by mistake).

Nightscout Stand

pratikOne of the highlights of being on the stand was when Pratik approached me with his team and asked for a quick run down on Nightscout, so that he could understand what his patients might be using or need to know.
The stand was really busy and I spent all lunch time chatting with those who knew nothing about Nightscout, or those who knew loads but had some questions, some who were struggling with issues, some who were struggling with the concepts, some who were just interested in my family’s use of Nightscout. I was pleased to introduce James to Matt for help on his project, and to signpost people to certain web sites.
If only I’d had the time to eat any lunch!

We need to talk about H

Oh. My. God.
I’ve never felt so embarrassed.
She approached the stand by herself about the same time as Pratik and I turned my attention to him (bad move Kev!) for what I thought was a quick ‘Hi’ but turned into something much longer.
After waiting a while she said ‘I’ll come back later’, I still didn’t recognise her or know her name at that point.
During the afternoon talks I looked around and saw her sat next to Izzy and it suddenly dawned on me who was there at the stand earlier and a pang of guilt ran through me.
Hannah, damn, it was Hannah.
Hannah, the lovely young girl from OopNorf who advocates so well, whose blogged I’ve read for ages, with whom I spoken on Twitter for years, with whom I’ve spoken via Google Hangouts, whom I’d never met.
Hannah, if you’re reading this: sorry, what a twerp I am but I’m so glad you came back to say hello again.

Chatting with the reps

With more talks during the after and some question time later I managed to grab a coffee and chat with Jenny from Abbott about the London Planetarium sleepover happending that night, an event Amy and I had been invited to but had declined. Hopefully there’ll be a few guest blogs on site, coming out of that event and use of Libre. I managed to sort out a trial for Amy – which she’d previously shown interest in – so watch this space for a Libre write up from us.

What a great event

It’s hard to imagine how TAD could have been any better and if it’s run again it’s hard to imagine who could be chosen to match the great line up of this year’s speakers.
To the Doctors who set this up, Partha, Catherine, Peter, I want to thank you, it was truly a brilliant day out and a great opportunity to meet friends and help others.

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.

JDRF Discovery Day Bournemouth 5/3/16

nnn-JDRF logo cropped_2“Call me Kath” said Professor Barnard when I introduced her to Amy and Jane. Moments before I’d wished the earth would swallow me up as moments before that Kath had recognised me (from Social Media avatars/photos) and I hadn’t recognised her. A tad embarrasing and not the best first encounter. Still we we’re lucky that Kath could make it to the event as years ago I was almost responsible for her untimely death, after telling her how simple it was to replace a broken dimmer switch. Turns out it is simple if you’ve done it loads of times, not so simple if you haven’t. Anyway, I was pleased I hadn’t killed Kath and I’ll be careful not to discuss electrics with anyone else ever again.

Back in early November I had contacted JDRF South to ask if myself and others could present Nightscout at the Discovery Day in Bournemouth. Imagine that, presenting to a Discovery Day, little old me. I don’t even ask questions at events, let alone present but Nightscout is different, you know the world doesn’t know about it and you want to make people aware. Nightscout however is unregulated and has not past clinical trials so it’s very understandable that JDRF couldn’t let me talk about it.

And JDRF had other plans for the event in the form of the very well respected Professor Katharine Barnard. It’s unusual that a Discovery Day has just one speaker but when you’ve got the chance to give the floor over to a renowned Professor then you do, you most definitely do.

I’ve been fortunate to meet and chat with several Professors this year, Simon Heller, Helen Cooper and now Kath. Here’s the thing, they’re all normal, brilliant but normal, experts in their field, but normal. A far cry from the stereotype British films and TV would have you believe.

Being a mum of a child with Type 1 the down-to-earth Kath found a very warm and engaged audience. This was no presentation though, it was almost a chat amongst friends, a discussion group, a think tank. Laughter rang around, interspersed with more solemn moments as some said things they about Diabetes which have a negative impact. But Type 1 crowds are never down for long and out poured many positives.

Kath picked up on some points and told us it’s okay to feel like that, it’s normal. This meant a lot to many of us who naturally beat ourselves up on a daily basis for not doing quite as well as we think we should, or could. In reality we’re all doing an absolutely brilliant job, but how many of us actually recognise that?

One standout for me was something I’d read before but this time in sank in properly.
Kath asked “Well controlled Type 1 Diabetes is the cause of ?????’
‘Nothing’ answered Helen in the audience.
Absolutely.
We’re all so worried about complications but are actually helping our kids tremendously.
I walked away quite proud that we’re helping Amy achieve ‘nothing’.

In what seemed like no time at all Kath’s hour was up and we all felt sorry it was all over. But then it was time for the peer support socialising and properly chatting with Steve, Becky, Matt and Sonal as well as the usual JDRF Discovery Day chat with Lesley from INPUT.

I loved this Discovery Day and if I ever get the chance to see Kath present again I’ll be there. You should to.

The 2nd #GBDOC Conference (#PWDC16)

pwdc16Last year’s first ever #GBDOC conference for people with diabetes turned out to be very successful, very popular and very enjoyable, so I was glad to hear Team Blood Glucose were going to run a second one. This year’s conference was set up to be a two-day affair at the more upmarket Colwick Wall in Nottingham.

Going, not going, going

As much as I’d enjoyed 2015’s conference I couldn’t really attend this year’s as I had commitments on the Saturday and couldn’t justify the £150 expense (tickets, hotel, travel) and I was sad to disappoint the several friends who’d hoped I’d go. Then Abbott stepped in to support the event financially making it free to attend and more importantly meaning I could attend for just one day, on the Sunday.
As it turns out my Saturday event was cancelled so I could have blooming gone for both days.

The excitement rises

As with last year’s conference my Twitter feed started buzzing several days before the event, everyone excited to finally meet or meet again people they’d spoken to daily for numerous years. If truth be told the conference itself wasn’t the draw for me at all, it was the people.

Trying to avoid Saturday’s excitement

treeAfter finding my Saturday event cancelled and disappointed that I could have attended the conference’s first day I couldn’t face the excitement on Twitter and decided to I needed to distance myself. So I positioned myself up one of my apple trees to give it a little prune, I think I may have overdone it as it took all day.

Stupid o’clock on a Sunday

A 6am start on a Sunday is unheard of but was a necessary evil to be able to arrive at Colwick Hall for the 10am start after a 3 hour, 175 mile drive.
It felt ironic that with so far to travel I was actually the first to arrive, closely followed by my good friend Nick and we went in to be welcomed by Rhodri, who helped organise this year’s event.
Nick, Rhodri, me, and no-one else.
pwdcarrival

A sea of friendly faces

People started arriving, Bob, Philippa, Sacha, Sarah, Steve, Paul, Jules&Lee, Lydia, Lis, Jo, Veeny and so many more. Chatter and laughs filled the room and it almost seemed a shame to break it when the conference started.

Open format conferences, the way forward

In open format conference style there was no agenda and it started with everyone deciding what they wanted to talk about and the topics were grouped together and sessions arranged.

Session One: MDI to Pump and Tech

A few people, Philippa mainly, had asked me to attend the conference just in case anyone wanted to ask me any tech questions regarding CGM, Nightscout or xDrip, so it made sense I’d join this session. I was pleased to hear that Tim Omer had done a great job on the Saturday with chats about xDrip, OpenAPS, HAPP and general artificial pancreas and CGM topics.
The session started off with a discussion about pumps, an intro on what they are, benefits of using one and about getting approval from clinic/CCG to get one. To be honest after 15 minutes I’d switched off a little – as it wasn’t so relevant to my situation – and happily chatted quietly with Steve whom I live a few miles away yet travelled 175 miles to chat to.
But I heard Lis say ‘Kev would you like to say something?’
‘Erm, no’ I panicked ‘I’ve not really been listening’.
The pump discussion had concluded and they wanted to hear about tech, from me, now; I really should have thought about this in advance.

CGM, xDrip, Pebbles, glanceability

Recently I’ve spoken to many about Nightscout, the ability to see your kid’s glucose values from afar, but Nightscout isn’t really suitable for an audience of adults, so I switched to talking about getting glucose values on a watch on your wrist.
Taking a step back I went through CGM and particularly how DexcomG4 broadcasts a signal out to anything which wants to listen.
Moving on to xDrip I explained the £40 DIY kit I’d built back in January 2015, which some had seen at last year’s conference when Amy demo’d it to a few.
I spoke about the glanceability benefits of having your glucose level on your watch gives and explained how it helped Amy through the day, especially being at school where use of phones is banned or frowned upon.
Nic and Alyssa asked some great questions about Dexcom and Medtronic CGM and I answered questions about extending the life of DexcomG4 sensors – obviously no-one does that right?! – and different positions they can be worn.
The time whizzed by and 20 minutes later and it was time for me to shut up.

The Afternoon Sessions

After a lovely lunch with great conversation with Philippa and a table of others it was time for the afternoon sessions although I’d decided session two would be reserved for a chat with Jules and Lee whom I was surprised to see, knowing that she was worn out by day 1.
For session three I joined in with the ‘Food’ topic, interested to hear other people’s opinions on food, different diets they used to manage their diabetes and its effects on glucose levels. After a great discussion led by Nick and with some great input from Vicky and Jo, before Paul arrived and Nick asked him to explain Low Carb High Fat and how it worked for him.
I found myself nodding with Paul’s chat so much my neck ached, he’s really got the knowledge of this completely sorted and it was a breath of fresh air to listening to someone helping others out with fact, not fiction nor flippant comment. Paul spoke in length about ketones, ketosis and diabetic ketoacidosis (DKA) and explained why people with diabetes can deal with ketones. He also answered many questions on how to get started in becoming ketogenic, truly great advice for those who were there and interested.

Post sessions chat

Yet again more time was devoted to chat with friends old and new and I enjoyed my chats with Bob and meeting Tim, Melissa and Matt for the first time, as well as chatting with numerous people who’s names I sadly haven’t remember.

It’s all over

And before we knew it the conference was all over and it was time for the long drive home. I’d had a great day, it seemed everyone had a great day/weekend.

Thanks

I’m not exactly sure of who did what but I’d just like to thank Paul, Alex, Rhodri and TeamBloodGlucose for all they did to organise and run the conference. It’s truly a great event I’d suggest everyone attends next year.
I’d also like to thank Abbott for the investment which meant that I could attend.

Worst first ‘transition’ clinic ever?

transition

So then, transition is a process which takes time.

A first chat about transition

Shortly before Amy turned 15 in November we had a home visit from our lovely DSN who talked about transition and said that at the next clinic Amy could, if she wanted to, go in to see the Consultant by herself. Amy said ‘no thanks’ and said we’d go in together.
That clinic was yesterday.

A normal clinic

Normal practice is that Amy gets measured and weighed and we wait until either the DSN or the Consultant is available. Sometimes everyone meets together, all squished into a tiny room.
With the Consultant appointment we will produce reports from Nightscout or Diasend and talk over anything we need to. We chat about care, school, events, issues, new technologies, insulins and so on.
With the DSN (and Dietician) we talk about pump infusion sites and little else. The Dietician doesn’t mention anything since I called her out on some factless stuff she’s said in the past.

Yesterday’s clinic

Arriving in clinic and with measuring and weighing all done we sat alone in the waiting room.
The DSN arrived and called Amy, we presumed to get her HbA1c done, but after a couple of minutes she hadn’t reappeared. Jane and I guessed she was in the loo. After a few more minutes we realised she was in with the Consultant, alone, going against what was said in November.
Ten minutes later Amy reappeared with the Consultant and asked me to guess her A1C. I failed, it had risen 0.9% and it took me by surprise. To be fair as a family we have worked on – and have succeeded – getting her standard deviation lower, removing the hypos. So it’s no surprise it has gone up. What did surprise me was the lack of concern from the Consultant but I thought that we’d get the chance to talk it over.
We didn’t.
She disappeared with a ‘sorry I’ve got someone else in there now’. ‘Really, what about us, what about our appointment?’ I thought, presuming we’d get a chance later.
The DSN arrived and called Amy but this time we stood up and went in too much to the surprise of the DSN.
The standard checks of site scars and tissue were done and we were asked if we had any questions…

‘Can we talk about transition please?’

They seem surprised I would want to talk about how today’s clinic had gone and said that it’s normal.
I suggested that if us parents would not get the chance to talk then Amy might as well be in adult clinic already. The Dietician told me that I was ‘lucky’ (cue dumbstruck face) that they’d left it until 15 as their guidelines say anytime after 12.
TWELVE.
Are they seriously trying to say that they think it’s a good idea for 12 year old kids to go it alone? Or was this yet another CrapFact the Dietician dreamed up?

Do they think we’re both here because we don’t work?

Let’s not forget that I had taken a day’s leave from work and Jane was losing her day’s wages to be able to attend clinic as a family.
That’s something we don’t mind doing at all, but there’s no point if we have no involvement.
That’s a cost DLA offsets but it’s also the cost of another self-funded Dexcom sensor. Hmmm, pointless clinic appointment or another CGM sensor. Right now, there would be no contest if we didn’t need them.

Is it time to change Hospital?

The way I feel right now, the way Jane feels right now, and faced with a lack of education (previous and future) and so far the worst transition experience ever?
Yeah, I think it is.
But…
Amy is relatively happy here, but she doesn’t realise the care she’s missing out on, she doesn’t understand what is available elsewhere, she doesn’t understand what a good transition could be.
I don’t feel comfortable switching unless it’s a family decision.

A way forward

It seems the best way forward is to let clinic know our issues and let them have a chance to respond, to see it our way, to change.
Jane and I plan to do this early this week.
If that doesn’t happen I feel it’s time to move on.