Best first transition clinic ever?

transition

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

Previously: Worst transition clinic ever?

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

A broken relationship with clinic?

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

“Are you ready to take the next step?”

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

The appointment

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

Helping the Young People ask for help: a great idea

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

Back with the old DSN

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

The new consultant

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

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

This was all exactly what we wanted to hear.

A long time later

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

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

Diaversary #6 – A New Hope for a Rogue One

a_long_time_agoFeelings on diaversary days fluctuate from year to year, a couple of years ago I was lost, last year not so much.
I apologise in advance for words so mixed up they’d feel more at home in an Alanis Morrisette song.

In a hospital far, far, away

The Imperial Forces of Langerhans attempted to hold Princess Amy hostage six years ago but the Rebel Forces managed to get her back and into safety since. The Empire tried to Strike Back in January and capture the Princess in its Death Star, which it calls ‘transition clinic’, but it was no match for the Rebel Forces who floored them and their evil plans with a polite ‘No’.
(I’m tempted to throw in references to Ewoks here but I won’t.)
By the end of the year the Princess decided she was happy to move to the Death Star though, so the Rebel Forces accepted this happily, after all it’s her life.
My role in this saga is of course Chewbacca defined by my inability to say much of use and the need for a shave.

Who said hospital food was bad?

The hospital’s canteen is good, even if their trays are a little damp.

Use the force Amy

Amy’s management has gone from strength to strength and one thing which made me realise this was when my friend Mike (@everydayupsdwns) and I were having a meal in March ahead of our presentations the next day. Mike counted the carbs in his meal and asked me how much I would have guessed.
“I have no clue”.
I didn’t. Amy’s done her own carb counting for ages now, so much so that I’ve forgotten everything. The realisation dawned on me that this is something I can no longer help Amy with, it wasn’t a great feeling.

Darth Vadar rendered speechless

In the last two appointments the Sith Lord has been rendered speechless when confronted with the blueprints used by the Rebel Forces and the Princess to undermine the Empire’s power. The blueprints, also known as Nightscout Reports, prove that the Princess’s knowledge is great and she has harnessed the force to become a Glucose Jedi, using science but ultimately becoming a master of the Art.
NOTE: I feel bad with the whole Darth Vadar reference thing: Amy’s consultant is lovely and has always focussed on Amy’s wellbeing rather than NICE target A1c’s, she’s always spoken to Amy rather than us – that’s great – and has always been there to answer any questions Amy has. Vadar(!) has also said she’ll continue to help Amy in her journey to her chosen career path in the medical profession.

The draw of Tatooine

Amy informed me this year that as soon as she’s 18 she intends to visit Tatooine in her bid to become a Rogue One 😉
Maybe Yoda’s greatest student was talking about Amy when he once said…’feisty one you are‘.

A New Hope from The Little Shop of Watto

(Okay, I’m mixing stuff up, but Amy had a few parts in the school’s 2016 production of Little Shop of Horrors).
Watto owns a junk shop, a shop containing lots of parts people no longer find useful in their quest for glucose graphs the shape of a light sabre. We’ve known Watto for a long time and call him by his nickname, ‘eBay’.
img_20161229_082613071Our collection of components has grown and grown and now contains three insulin pumps, two Intel Edisons, two Explorer boards, two batteries, and an array of other bits.
Maybe soon I’ll start looking into the plans of the Diabetes world’s own Princess Leia (@danamlewis) and Luke Skywalker (@scottleibrand); those plans are called OpenAPS.
I’ve been looking into this for a long time now, Amy wasn’t ready but now it appears she’s interested. Whether I’ll have the ability to make this work and when I’ll get the time are another thing altogether.
Hopefully these components will be the winning combination to use in conjunction with xDrip to create a DIY Artificial Pancreas.
img_20161229_082633953

I wonder if by the next Diaversary we’ll hear this?

World Diabetes Day 2016 and Blogaversary 4

londontoparisSo maybe this blogging was a fad after all, I’ve hardly kept it up-to-date, happy instead to read the blogs of some of the community’s new bloggers, like Amber.

Real life is more important right now

In fact it’s not just the blog which has taken a back seat to real life, Diabetes has too, well at least it has for Amy.

Aim for the sky Amy, diabetes won’t stop you

Life for Amy has just been so busy at the moment, with school, with friends, with gigs, with hobbies.
She’s decided to aim for the sky as far as education goes, striving to get herself into a position to apply to undertake a medical degree at one the UK’s most prestigous universities. At this stage whether she gets there or not is neither here nor there but one thing’s for sure: she has not considered that having Type 1 will stop her in her quest.
With the attitude to life and diabetes she has I have absolute faith she will achieve major successes in life.

Technology takes a back seat…

November 2015 saw Amy going to strength to strength with Nightscout and her Pebble watching displaying her glucose levels.
Then her Pebble broke and I never got round to fixing it.
Then eventually she decided that she wanted a break from CGM when her Dexcom G4 transmitter battery died.
From a parental point of view and especially as a member of the Nightscout UK team I’ve found it a little difficult to come to terms with a lack of CGM data, after a couple of years relying on it.
BUT, this is Amy’s diabetes, this is her choice and regardless of what I’d prefer I must respect her decision.
For the moment she’s wearing the occasional Libre and this is generally working very well for her, giving her poor fingers a rest from jabbing with a lancet. Libre is enabling her to see her data and we’re taking such a back seat that I have not looked at any of her data, whatsoever.
We’re so lucky that Amy is on top of her diabetes and things are going well, if she wasn’t and things weren’t maybe we wouldn’t be so relaxed, but for the time being technology is not the answer.

But Thank God for technology

One year ago today we were waking up to the morning after the terroist attacks in Paris.
I’d taken Jane to Paris for her birthday celebrations, it was the first time we’d ever left the kids (aged almost 18 and 15) alone, so it’s darn typical we’d go on that weekend to that city.
But Thank God for Nightscout, which enabled us to take that well needed break, knowing that we could see how Amy was and if needed get help to her, or nudge her sister into helping, or so on.
Without Nightscout, we’d never gone away that weekend.
Without Nightscout, Jane and I would never had the fantastic time we had.

A year of presentations

For me, this last twelve months have been somewhat challenging, but has brought forward some fantastic opportunities and experiences. I’ve always hated public speaking, in fact I won’t even speak up in a pub or a group, preferring instead to listen to everyone else, so the idea of doing presentations used to freak me out.
After the presentations at CWD FFL 2015 I’ve launched into seeking opportunities to present Nightscout to other families and health care professionals, all for awareness only.
First it was the opportunity to visit the Houses of Parliament with INPUT Diabetes for the Medical Technology Awareness meeting.
Back in January, along with Stuart, Kate and Amy, we presented two long (1.5hours) presentations to JDRF and Diabetes UK, giving them a run through of everything Nightscout.
A few days later I got the great opportunity to present about our life with T1 at Dr Partha Kar’s TalkT1 event, and of course slipped in a fair few slides about Nightscout, try stopping me.
Then in April Dr May Ng asked me to present at the CYP North-west education day, talking about our life with Diabetes and of course Nightscout and OpenAPS got some slides too.
Again in April I presented Nightscout to the National Diabetes Psychologists meeting.
This year of presentations culminated with my biggest opportunity yet: presenting Nightscout to NHS England. Again this was done purely for their awareness, our Nightscout team of presenters (me, Kate, Matt) expected nothing but we got so much more – blimey, just realised I never blogged about this…must do that soon.

And some fundraising too

I was amazed that my ‘let’s get a team of Diabetes Dads cycle London Nightrider‘ post on our Facebook group resulted in a team of around 30, raising close to £20,000 for JDRF. I enjoyed all the organising of this and giving us Diabetes Dads the chance to meet up.
I’m also pleased to have helped my friend Kelly organise of group of 16 of us to cycle from London to Paris. Between them they raised thousands for several local Diabetes charities, enabling the purchase of CGM to help others in need.

A few other things I’m proud of

Getting Carlo to link his Libre-scanning Glimp app to Nightscout.
In April as part of promoting Diabetes UK’s 100 Things book, Jane, Amy and I appeared on a local TV channel. It’ll be the one and only time I let my eyebrows get a media outing. I was really proud of Jane and Amy, they did brillantly.
JDRF’s Type1Catalyst event saw both me and Amy in Parliament, unfortunately though for Amy several hours walking around Camden meant she spent most of the time in Parliament trying to get out of a hypo.
I’m proud to be one of the founding members of the new T1 Resources web site. Sophie and Mike really have done a great job of organising such a great resource.
Most recently I’ve enjoyed being a judge for the QIC Diabetes Awards.

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

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

15045327_10154718440976913_1948820034_o
Paige and me enjoying a coffee soon after diagnosis

A BIG THANK YOU

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

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

A big sister’s knowledge

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

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

That sinking feeling

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

Heart in my mouth

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

In total disbelief

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

15051995_10154718424276913_1653195420_oSienna supports her sister in hospital

A journey forgotten

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

A journey shared

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

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

 

From Night-crawler to Nightscouter, a Diabetes Mum’s story, by Lucy Veal-Johnson – Part 2

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

A quick introduction to technology

Sienna wears first g4Sienna wearing her first Dexcom G4 sensor

We were quickly introduced to Nightscout early after diagnosis as my best friend had a childhood friend in France and her little one had T1 (small world). We got talking on Facebook first and she told me of how they use this home-made computer like box and link it with a CGM (Continuous Glucose Monitor) so that they could see her levels on her phone or smartwatch anywhere. She could be at school and you could be doing the weekly shop and see her levels at any given time.
Later on this was to become the beginning of an end for my immense Night-crawling,

A hard smack in the face

sienna1Sienna has an awful hypo
One reason why CGM is so useful

Having talked to the Psychologist and Diabetes team about how scared I was of losing Sienna in the night I asked about CGMs (Continuous Glucose Monitors) to be told that we were doing a fab job and didn’t need one.
As encouraging as that was it didn’t help much.
I took it as a hard smack in the face because I felt my fears and the tiredness were all getting too much for me to cope with. I started looking into funding our own Dexcom CGM as a way of seeing her sugars without having to prick her fingers, without disturbing her, without me or us getting out of bed to test her. To give us both that much needed rest.
The CGM would allow a sensor to sit underneath the skin and tests the fluid, which in turn would send her sugar levels to a transmitter, in turn sending it to a handset/receiver.
Nightscout was mentioned to us right from the start of her dx (diagnosis). I had a friend overseas to talk to about how she found it with their little one. She could see her little ones sugars on her smartwatch.

I am not going to wait

xdrip
Sienna’s xDrip which I built myself

This new found technology was my way forward, I wasn’t waiting, I wanted to feel more settled and to fully be at ease in caring for Sienna but it all seemed a million miles away.
Nightscout was on the cards like a new goal I had to achieve and has now become a big part in how we care for Sienna.
I asked the team again about funding for Sienna and we were told this time that she would be funded by the NHS and that it wouldn’t cost us a penny. (How thankful are we to have an NHS system like this, but also a shame as really it does help more than they think).
But I would feel half lost if we didn’t have Nightscout.
Knowing that she would be funded we set about ordering some parts to build our own xDrip, this was the bridge between Sienna going anywhere without me and me wondering whether she was alright, say at preschool or going to see grandma, nanny and grandad, or friends and not worrying about the what if’s as I can see the what now’s.

Remotely caring for Sienna, together

xdrip3
xDrip fits nicely in a TicTac box
xdrip4

We can all be proactive in caring for Sienna as a family.
Sienna going off to preschool was a big issue for me as I felt that I would be out of control of everything. I felt that if I get it wrong I have only myself to blame, if someone else gets it wrong that would mean so much more. A mother will protect her young!! (but they are all trained in Type 1 and have a care plan).
With Nightscout I can now be sat at home knowing her sugars are fine as I can physically see them on my phone, just as good as the Dexcom, I can now leave her at total ease.
I cannot understand why the Nightscout has not been snapped up on the NHS? It should be. It gives parents that full peace of mind, it gives more than Dexcom can alone.
We waited too long to get funding to make this happen.
Parents, family, friends don’t want to wait, they have as much love for our little one as we do. It has been a massive positive for everyone and they feel more in control it’s the missing link. My advice is look into it, get it sorted, sort the levels and sort the stress that T1 as a whole brings.

Brighter days

Sienna is so brave as all our T1’s are, she makes my world a brighter place to be when I’m in her company and if she can be strong and not let it bother her then so can I. She is going to school in September and I can’t wait to watch her transition into year R and start her school Journey.
Together we will fight the T1 battle everyday but it does get easier and you start seeing the brighter side of things. Situations like how many different or unusual places have you found a used blood strip, how many times have you tried testing the wrong kid or how many times have you disposed of the food wrapper only to delve back into the bin minutes later because you haven’t checked the carbs on the back first.
But if all else fails know that you’re not alone, you really have thousands of friends all going through the exact same thing.
Thanks to all those people that made Nightscout possible for us, you really are something and beyond.

From Night-crawler to Day-walker, a Diabetes Mum’s story, by Lucy Veal-Johnson – Part 1

I met Lucy and her family about a year ago, at an event organised by the local (South Hampshire area) families support group, Seahawks. We’ve spoken quite a bit, through highs, through lows and one day I offered her the chance to tell her story.
Here’s part one of a three part story.

sienna-for-blogLet me set a scene.
The date was 22nd April 2015, sat outside in the garden with some friends and my mum having a nice sunny chat over a few cups of coffee. Sienna was our youngest of four children at 2 years old she was tottering about tripping over her own two feet like a drunk 2 year old whilst playing with her toys. She had been under the weather for a couple of weeks and had noticed a change in her but couldn’t yet put our fingers on what was laying beneath. In my gut I knew she wasn’t right but was waiting for something more poinient to come through so I could say “yep, that’s it, that’s what it is” But nothing as frustrating as it was I was a mum of four, so yes experienced in the art of motherhood. The tripping over stood out as well as going off her food only wanting biscuits and drink, coupled with a bad bout of thrush. She had suffered with this on and off since birth but this one was taking an age to go. The next day day she went with her child-minder whilst her father and I went to work. I had mentioned to her that our little one wasn’t right but couldn’t put my finger on anything but if she needed me to get her I would. We didn’t hear anything all day until I picked her up on the school run. She went on to say that Sienna only had a couple biscuits and drank like a horse but most definitely wasn’t right and agreed with me that she could also not put a finger on it. She also had experience in the art of motherhood as well as achieving the minding of children certificate. With that I made the decision to ring the doctors and get her booked in for an emergency appointment that eve, explaining that she wasn’t right at all but really needed to be seen.

Trusting my instincts

My instincts were right.
As I exited the school gates she started going blue, I had already phoned a friend to help look after our other three whilst I took her to the doctors appointment. After I had told our doctor what was going on he went to ask for advice from the nurse but had first asked me if he could get her to perform a blood glucose test. Desperate for anything to help our little girl I replied with a yes of course.
Test 1 = HI on the testing meter but I had no clue what that meant so the nurse asked if she could do it again just to make sure but this time explained what it was for and why she was testing again. It slowly sank in. She was testing Sienna for Type 1 diabetes.
Test 2 = HI but this time the nurse turned around and talked to the doctor first before turning to me and said that our little Sienna was type 1 diabetic and the testing meter only goes to 32 before it cannot read sugars higher than that. The nurse exclaimed that Sienna needed to go to hospital to find out how ill she was and that she would be on injections but also that within 12 hours she would be feeling slightly better. The doctor in the mean time had called an ambulance and had come back to tell me that I should let her dad know what was going on. The next half hour was a bit of a blur with me texting close family to tell them in short hand text that Sienna was being rushed to A&E because of T1D. I felt like I was in a whirlwind, as the ride to hospital neared everything all jumbled into one.

Hospital arrival

Upon arriving at the hospital she had two drips in each of her hands and numerous blood vials were being taken. I had to literally pin our struggling, kicking and fighting 2 year to me with all my might. Dad arrived along with a close friend of the family,I was relieved but very shaken. Pinning her down really got to me. The consultant came in once Sienna was more settled and fully explained what T1 was and how it would affect her, how the hospital would help and who was going to get involved in helping her recover. For me, the next three days were a blur, all I knew and understood was that our other children were with our friend and that my little girl was hurting inside and I couldn’t make it better for her. Any mum would feel the same, no-one likes seeing their children in pain and just sitting there doing nothing, I felt hopeless.
Part of being Hyperglycaemic is that she loses all sense of normality, she becomes angry which is understandable, they say it’s like having a hangover with the headaches, feeling and being sick, wobbly like she was almost stagger like. And for a 2 year old to feel like that hit both her dad and I like a ton of bricks. She didn’t want me, no cuddles, no hugs, no soothing, NOTHING. The more I tried the angrier she was. This was totally a shock to us as she was always a sweet caring little dink (her nickname being the smallest and the baby of our family). Paediatricians, Diabetic nurses and dietitians, psychologists and consultants all came to give us individual talks on how they would each be helping Sienna and us come to terms with this life-changing condition.

sienna-for-blog-2
Even blood glucose strips need some love

Filling up with information

The injection training started on the third day when Sienna was well enough and coherent enough to tolerate being injected.
Both her father and I had to perform finger pricks every 2 hours, give 5 injections to Sienna and be confident in carb counting before being allowed to take her home. The team were fantastic in working with us for us to be able to take care of her at home. Our minds were stacked full of information, Yes with diabetes there is a lot to take in and a lot that can affect her levels.
Friends asked me later on how do I hold all that info? I said that I feel like we have completed a five year degree course in type 1 diabetes in 5 days and it just comes, there’s a little life at the end of it so you cant forget.

Feeling overwhelmed

Being told to give injections that could potentially be life threatening either way if you get it wrong was an over whelming feeling too. Too much insulin and you overdose and her levels will drop too low taking her into Hypoglycaemia. As she developed T1 at a young age she has no Hypo awareness, this is also a worry. The feeling of this is likened to an emotional female at the worst time of the month with the crying and the hunger. Her little brain is being starved of the glucose it so desperately needs making the brain function inept. Too little insulin and her sugars swing the other way, they would rise way up to the sky (sky/ HI). I took two weeks off work where I was a full-time lifeguard pool manager working shifts and my partner was working as a technician I ended up working for another eight weeks before the 2 hourly night & day testing took it’s toll. I constantly saw numbers on everything and soon became a genius in knowing the carbs in a slice of bread or a fudge bar to a small banana. You see, diabetes doesn’t sleep or take a break which meant we couldn’t either. We couldn’t just say we don’t want you today please come again tomorrow, it’s here to stay. However much I wanted to say just DO one.

Nighttime Ninja

I soon became the master of the night, The illusive one, Yes I became “THE NIGHTTIME NINJA”. Testing blood sugar levels in near complete darkness, I have the eyes of a hawk and the stealthiness of; well some kinds of demented ballerina Have you ever tried dodging Lego in the dark, delicately tripping over dolls and teddies with only the light of the blood meter to light the way. Then to use the meter light to light up the finger pricker to prick your precious ones finger for the umpteenth time, to then use it to light up the smallest drop of blood ever like some kind of spy. Mission impossible was only complete if her sugars were in range. If not we gave our little one a Jelly baby, yes a sweet in the middle of the night, kind of goes against any normal thinking but this one little jelly baby can and has saved her life on many occasions, all hail the jelly baby. Our little one safe and definitely soundo when I left to go back to bed and rest until the next alarm goes off in 2 hours. This was a mean feat. I can be sleep deprived longer than I thought I could and still get up and do a normal day. I think they call it a mombie, but after six months I was very, um exceedingly, no wait extremely tired, exhausted, worried and scared.
I cried more tears than I have drunk hot water. I tried to buck up my ideas and tried to be brave but no matter how hard or how brave I felt I was so scared that our little one won’t wake up in the morning. Mornings for me are special when I see her stir or take a breath, (that’s also normal to feel like that, but it does get better, a lot better. Over time I got used to walking the floorboards at night. I was now a master in the art of Night Crawling, I had passed the Lego and doll tests, I knew which floorboards to miss, I new how to give a hypo treatment and correction injection without fully waking our little tot. Not once did I ever test the wrong child due to tiredness and survived to do it all again the next day or that day depending on which side of the clock you’re on I suppose.

I am not alone

I very quickly joined a Diabetes discussion forum on Facebook.
I was not alone.
The parents all gave their welcome speeches in their own way and I quickly realised how many little tots there were all over England, Scotland, Wales. I quickly learned that advice can be gained at any minute of the day, every hour of the day and night. I read other parents T1 Journeys with their little ones just like your reading mine now.
“I couldn’t inject” one friend said to me, another said “it could be worse”, “so she can’t have sweets now” every one of those questions really grated but one thing was for sure I had my FB T1 group to vent to. A HUGE group of parents of children with Type 1 diabetes, they ALL got it, they knew what I was thinking, what we were going through as a family, they knew the right words to say anytime of day or night. We like to share every little bit of happiness and excitement and achievements as well as go through the journey of Lows, the hospitalisations for some little ones. But the journey’s we’ve had we take together. I’ve never met any of them/you but because we all talk so much it’s like I have known them for an age.
For them/you this is my own personal thank you.
Thank you for being there through the good times and the bad.
Thank you for giving that extra little bit of advice at stupid o’clock in the morning as well as sharing our HIs and LOs 😉

At least night time testing provided some comedy moments
sienna-for-blog-3
 

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 a big bank 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!