Helping out our future Pharmacists

VariousPills

A few months ago a local parent of a child with Type 1 posted a request for help from Portsmouth University’s Pharmacy department for people to be interviewed by their students. It didn’t sound like my cup of tea to start with but then it dawned on me: I’d get two hours to talk about life with Diabetes to people who actually wanted to listen. Oh yeah, hello, I’m in.

As I walked through the corridors of the University on Thursday afternoon I wondered who was more nervous, me or the students. It turned out it was the students, but only at the start as they got into the flow after question 1 and asked some pretty good questions to further their learning.

Working in pairs one student interviewed me whilst another operated the videoing and took notes, lots and lots of notes. They use the videos to watch their own performance so that they can improve their interviewing technique and learn how to phrase questions better. To be honest though they didn’t need to worry about asking me open questions to get me to open up.

Bearing in mind that they were only year 1 students who had only been at Uni for a few months they all amazed me with their level of understanding of everything I said. In the first couple of sessions (of the 7 or 8 that I did) I threw out words like ‘insulin’, ‘HbA1c’, ‘hypo’ and ‘postprandial’ whilst tentatively saying other things like ‘CGM’, ‘diabetic ketoacidosis’ and ‘diabulimia’. But they knew about everything I said and listened without requiring further explanation; I guessed they had been prepping hard beforehand.

After 2.5 hours of being interviewed I was pleased on many levels: I got to talk to people who were really interested; I got to answer so many great questions; I helped the students realise the reality of living with a child with Type 1; I got through talking about Amy’s diagnosis without feeling too sad.

There was one moment which made me smile, through the sheer innocence of the question:
pharmacy student question

I’m so glad I took part in this event as I found it worthwhile for me and helping out our future pharmacists can only be a good thing…unless of course I said anything controversial…but I wouldn’t do that, would I? *ahem*

Blogaversary 2 on World Diabetes Day 2014

Spinnaker Tower on World Diabetes DayIt’s hard to believe yet another year has gone by in the Diabetes world, here’s a little bit about what’s been going on.

But first, it’s my blog’s birthday; 2 years old today (well actually yesterday but let’s not worry about that minor fib). Its visits have doubled since the first year’s statistics: I’m pretty darn amazed with that. What really pleases me is that I can see from the stats that people have searched Google and found the answers in my site, that’s kind of why I started it in the first place.

In December 2013 my daughter Emilia decided to take part in the TrialNet study at Bournemouth. It was two long months before we found out her results (and mine) were negative which pleased us, although we were saddened to hear that a friend’s result was positive.

Christmas and Amy’s Diaversary (29th Dec) came and went and her 6 month old Animas Vibe insulin pump made life easier during the festive period.

Amy and KevEarly in the new year I started my shifts as a national peer supporter for Diabetes UK, answering phone calls once a week and helping people find solutions to problems, or giving them ideas from the experiences we’ve had in the family. It’s proved to be really rewarding.

AccuChekInsight1March was a whirlwind on a particular day, the 15th, which saw us have two back-to-back diabetes events, doing their impressions of buses and policemen (none around, then there’s two). The first was an education day held by the local Type 1 families group Seahawks where amongst many other things I got to check out Roche’s latest pump, the Insight. It a great event and I was sad to rush away from just after lunch. But rush we must as Amy was doing a sponsored Indoor Skydiving in aid of JDRF along with lots of kids we knew pretty well; she loved it, every minute of it.

dblogweek squareIn May I joined in with blog week and I remember how nervous I felt when releasing my poem for Tuesday’s entry: A Childhood All Gone. It turns out I needn’t have been so nervous and I think that’s turned out to be my most favourited/Retweeted/Liked blog post ever.

flatline-dayEarlier in March Animas got the green light for use of the Vibe pump with Dexcom CGM for children, something we’d be waiting for since June the previous year. One year after getting her pump Amy went live with CGM and what an eye-opener that turned out to be.

twitteravatarJune also saw me cycling 100km around London overnight with a group of friends in the Nightrider charity event, where my local group of 8 raised £2700 for JDRF. On the plus side the training for it and switching to a healthier diet has also seen me shed 1.5 stone.

My personal highlights for this last year though involve each one of my kids. First Amy spoke in front of hundreds of Paediatric Health Care Professionals in a transition chat set up by the wonderful Dr Kar from QA Hospital in Portsmouth. Secondly, it was Emilia’s prom and a combination of pride and tiredness (from Dad-taxi pick ups at 3am) made me quite reflective: The Forgotten Sibling.

Portsmouth’s second SweetMeet – another privileged invite

amyprize2Amy shows off the carb counting scales she won at the SweetMeet

In the middle of a busy weekend – clinic yesterday, TeamBloodGlucose cycle ride tomorrow – Amy and I had an invite to the second SweetMeet organised by the team at Portsmouth’s QA hospital. For us it was another privileged invite being personally invited by Dr Partha Kar for the second year running.

Amy and I met Laura and Tanwen as soon as arriving, then with a breakfast bacon butty in hand had a nice chat JDRF’s Sue and DRWF’s Lee. Helen the pump rep from Roche was there and to our surprise our Animas rep Emma arrived, pleased to see Amy and to hear that she was getting on well with her Dexcom CGM, which Emma trained us in only two weeks ago. It’s really lovely coming to events like these and knowing so many people, it’s like one big family.

Kicking off with a great team

SweetMeet2 was officially opened by Lisa who referred to herself as just a nurse before introducing the team who had given up their spare time. With the plan for the day read out Dr Partha Kar stepped up to start the day off, but before doing so he praised lead nurse Lisa for the dedication and hard work she puts in keeping the department running.

66 years and the future

nhs creation leafletWith the NHS being formed 66 years ago to the day Partha outlined the changes in the NHS and in particular funding, explaining that funding had been matched to requirements from 1948 until a few years ago when funding plateaued, starting a funding gap which is unlikely to close any time soon. But there is hope and it will be found by making sure the right people perform the right jobs, freeing up the Wizards (Consultants) by getting the Gatekeepers (GPs) to perform the tasks they can – these references coming from Nigel Mathers and Paul Hodgkin’s 1989 story about the NHS “The Gatekeeper and the Wizard”

Speed-dating with the professionals

Next up it was time to speed date with the professionals, with the audience staying at their tables and professionals moving around the round to ask/answer questions during each 7 minute slot. Seven minutes goes very quickly when questions are being asked and it’s amazing how much you can cover during that time.
The podiatry and retinopathy sessions explain a lot about the processes that we know very little about and gave answers about what you should expect (nerve tests on bottoms AND tops of feet) and by whom (GP surgery nurse).
Partha did a session and an important message came across: people can and should help themselves, a message I’ve lived by since discovering the #DOC (Diabetes Online Community). The bigger question though is how to get those not already engaged to become so as those at the SweetMeet were clearly engaged already.

My favourite speed date

My favourite speed date – this sounds awkward 🙂 – was with Dr Iain Cranston, who chatted about Abbott’s Flash Glucose Monitoring, something I’m looking forward to being announced officially in September at EASD in Vienna – like many I’ve had an invite to go but can’t quite justify it. It has the potential to revolutionise finger-stick tests as it promises to do away with them, instead relying on swiping a NFC device across a sensor which is changed every two weeks. I didn’t think much of this technology initially but when I realised that it stores the last 8 hours of tests I realised it could be used as a non-alerting CGM, which is just fantastic. Fantastic that is if Abbott pitches it at a price to rival meter strips.

Breakout session 1: are all carbohydrates equal?

This year saw the introduction of two breakout sessions, with Amy and I going to the one of carbohydrates.
With a session of 45 minutes, 15 people and two dieticians it was like being a kid in a sweet shop, although obviously the first rule of SweetShopClub is that you don’t talk about sweets in front of dieticians. 🙂
Starting off with some simple carb-counting we moved on to GI which raised some interesting discussions, based bolusing for low-GI and wave bolusing techniques for pump users.
It was the first time I’ve been able to talk sensibly with a dietician about LCHF (low carb high fat) diets, their effect/usefulness and more importantly whether they’re suitable for kids, or can be adapted to be so.

Breakout session 2: new developments for type 1 diabetes

Dr Iain Cranston held our second breakout session which started with us all stating the new developments we wanted to know more about. With islet transplants and stem cell research already on the board (two things which could go hand in hand to get people off insulin) I offered a couple of other things: smart insulin and inhaled insulin.
Dr Cranston’s knowledge of developments is great and filled us all in on each of the developments, answering my questions about beta-cell replacement whilst super-T cells still exist.
How often do you get the chance to ask questions like this, that’s the beauty of something like the SweetMeet. I have a feeling that if the allocated time hadn’t run out Dr Cranston and I could have chatted about stuff like this for hours.

A patient’s experience: educate yourself

Lee Calladine, spoke about his life with Type 1 diabetes which he was diagnosed with aged 33. As DRWF’s Event Organiser Lee organises events such as the DRWF Wellness Day South which I attended two weeks ago as well as last year.
Lee’s message fitted in nicely with Partha’s: educate yourself, find out about your diabetes and your gains will be great. Since educating himself Lee feels more in control, has got his HbA1c lower and minimised his risk of complications and that’s something we all want.

Thanks Sue

The second SweetMeet was a huge success in my opinion and Sue, one of QA’s dieticians, should be thanked by all who attended for organising a great event. Well done Sue, we really enjoyed it.

And finally, Amy wins another prize

At last year’s event Amy won a bottle of champagne in the carb counting quiz, which of course was commandeered by myself and consumed shortly thereafter. With high hopes she entered this year’s quiz and alongside a few others won another prize, this time a set of Rosemary Conley Nutritional Scales which will hopefully be very useful for carb counting.
Here she is with them:
amyprize2

DRWF Wellness Day – 21st June 2014

drwf logoI joined many other friends and local people with diabetes at the 6th Annual Diabetes Wellness Day South, held by the Diabetes Research & Wellness Foundation in Southampton. Last year’s event was a good one so I had high hopes that this one would be as good; it was. The Wellness Days are whole day events which cost £5, starting at 9am and finishing at 4pm, with a lovely lunch included (worth the £5 alone). There’s many presentations plus there’s the opportunity to ‘Meet the Experts’ during a mid-morning break.

What made this day so good for me was not just the presentations/demos/food/free-biscuits but the fact that I shared it with friends from the diabetes online community and more importantly my Dad who recently become a volunteer helper for DRWF. Dad has Type 2 Diabetes, something he’s lived with for years.

Starting the day off

Dad and I arrived at the same time and it was lovely to see the DRWF people chat with him and knowing that he can talk the hind legs off a donkey I left them to it. I bumped into Michelle and had a chat, said hello to Helen, then Lee, Sarah, Claire before heading off to chat with my friends Tanwen, Kelly and Steve. It looked like the event itself might get in the way of networking 🙂

Human Islet Cell Isolation and Transplantation

Professor Paul Johnston gave a very interesting talk about his work with islet cell transplantation, cells which he explained only form 2% of the pancreas, so most people with Type 1 have a pancreas which is 98% ok. It makes sense then the a transplantation of islet cells is a better option than a full pancreas transplant giving the risk of rejection for a new organ. I had no idea how quick the transplantation process was for the patient, less than an hour. Just imagine that, you spend years and years dealing with diabetes and in less than hour you’re cured, at least for a few years. Obviously it’s not quite that simple, there’s a little more to it.
Rae-Marie Lawson spoke about the islet cell transplant she’s had and how she’s getting on now, an uplifting story considering given the lack of hypo awareness she had.

Meet the Experts

This breakout session gave everyone the chance to have a chat with the representatives from various companies, NHS departments and charities.
There was another group there with a stall, the Sugarbuddies, a new initiative for peer support for the newly diagnosed Type 1s in the area. I’m proud of Laura, Kelly, Tanwen, Steve and Meghan who are a driving force behind this project and with their backing it’s sure to do well.
I spent much of the breakout session speaking with Mandy from PEDS (Ponies Educating Diabetics and Siblings) which is held at the local stables where my eldest daughter Emilia has been doing her Duke of Edinburgh volunteering recently. I’d never met Mandy before but she recognised me instantly from my peer support article in the Daily Echo. Mandy was lovely and it’s a great thing she’s doing with PEDS.

What the dog nose but can’t tell you

Next up was a talk about Medical Alert Dogs and how they help with alerting their owners that they (or their child) is going too low or too high. I’ve not only seen this talk three times now but I’ve seen Claire Pesterfield’s dog Magic alert her that she was hypo so I understand how good they are. Whilst I also love the idea of having one for Amy I’m not sure our cats would like it.
I also had another idea…HypoMeerkatTweet

Supermarket Sweep

Sarah Woodman (Diabetes Specialist Dietician) – another one of the Sugarbuddies – held a session talking about food, or rather food choices, about labelling and healthy options. I’m not sure much of it was new information to people with Type 1 giving the regime they have to follow carb counting everything but I’m sure the majority of the audience (of Type 2s) would have learned a lot.
Given some of the recent changes in food advice I was pleased to hear Sarah get a particular point across: SupermarketSweepTweet
I love eggs and eat quite a few per week, my total cholesterol is 2.58, so clearly that old advice was rubbish.

Diabetes, Ramadan and the Hajj

Dr Hala Alsafadi gave a quick presentation on observing the religious festivals which managing diabetes.
Ramadan, which started yesterday (29th June 2014), is a period where followers fast between sunrise and sunset in the locality. Ramadan shifts throughout the 365 day calendar year and for those resident in the UK the new few years are going to prove tough as Ramadan spans the longest days of the year. Today where I live sunrise was 4:54am and sunset is 9:23pm, so that’s a period of 16.5 hours where observers cannot eat, that’s got to be pretty tough for anyone, let alone with Type 1 and Type 2.
Luckily people with Type 1 Diabetes are exempt from this, however many choose to observe the fast.
Diabetes UK have produced some advice about Ramadan: Managing Diabetes During Ramadan

The Tai Chi Escape Plan

After a healthy lunch it was time for the Tai Chi session but neither me,Steve,Kelly,Tanwen or Laura fancied doing it so we slid out and headed to the nearby McDonalds for a drink and a chat. It’s such a nice little group we’ve got locally, just a shame Meghan couldn’t make it too.

Tabs and Jabs

Dr Mayank Patel started the last presentation talking about the many different types of medications available and mentioning some which he hoped people weren’t taking, luckily no-one raised their hands.
Advanced Specialist Pharmacist Philip Newland-Jones finished the presentation talking about prescriptions, medication and pharmacists. It was the first time I’d heard Philip talk and I thought he did really well, getting his points across, having empathy with the audience and especially some disgruntled ones.

Ask the Experts

This was a open question session for the audience to ask whatever they liked. Questions ranged across many subjects and each was answered by one of panel members (Dr Patrick Sharp, Jan Mitchell and Sarah Woodman).

The forgotten sibling?

Emilia on her prom busEmilia on her prom transport, a wonderful old London bus

It’s 4:58am and I’m sat here awake, unable to sleep after picking up my eldest, non-pancreatically-challenged daughter, Emilia up from her after-prom party. It’s suddenly struck me how much of our time is geared up for managing Amy’s diabetes, or dealing with Emilia’s GCSEs and switch from school life to college life. Last night was completely different and it was lovely to focus on something wonderful and filled with joy: Emilia’s prom.

I’m not sure how often I stop and wonder how Amy’s diabetes affects Emilia, but I’m sure it’s not enough and it needs to be more. We’ve had a fair few chats about it but they never last long and it was only when we had a day off together whilst taking part in TrialNet that we spoke in detail about it all, how she felt, her worries and her fears for both herself and Amy.

Some months after Amy’s diagnosis Emilia and I ceased our only scheduled Father-Daughter activity, going to watch Southampton play football, and whilst this was more about finance and definitely nothing to do with diabetes I wish we’d carried it on. Soon after I launched into a world of finding out more about Type 1 diabetes; I wonder if Emilia links the two together. I should probably ask her. Today.

Last night’s prom turned out to be everything Emilia hoped it would be, meeting the high expectations that five years of dreaming about it had built. Surrounded by a great bunch of friends arriving together on a red London bus – which in my opinion looked far nicer than the posh cars which blurred into each other and will be forgotten tomorrow – I couldn’t be more proud of her. I should probably tell her this again. Today.

On hearing how she cared for several friends at the after prom party I realised that in some ways we’re one and the same, both worried more about other people’s health than we are about ourselves, both wanting to make sure others don’t end up in trouble or danger, both wanting to make sure that people get the pastoral/medical care they need. Again, I couldn’t be more proud.

I hope then that she doesn’t feel she’s a forgotten sibling, losing out to her sister’s care and the time that all takes. I hope she’s realises that we have no choice to spend time doing these things to make sure her sister lives a long and healthy life. I hope she realises that if diabetes didn’t darken our doorstep this inequality of time she suffers just wouldn’t happen. I should probably make sure of this. Today.

I’ll leave you with a picture of my eldest daughter, Emilia, a beautiful girl with a great future ahead of her, sitting on the swing beneath our apple tree.
emiliaswing

Nightrider London awaits

NightRider2Three days from now, at dawn on Sunday, I should have just finished cycling 100km around London, raising money for JDRF. I truly can’t wait to do it particularly as I’m doing it as part of a team mainly consisting of my work colleagues.
We start off from Crystal Palace at 10:35pm anti-clockwise through Tower Bridge, Canary Wharf, Olympic Park, Alexandra Palace, Waterloo, Whitehall and The Mall before ending up back at Crystal Palace.

A team grows
Last year I read about Nightrider shortly after cycling next to Gav in his GBR30/30 challenge and it captured my imagination, so I decided to do it in 2014, probably by myself.
Discussing it at work and Jon decided he’d do it as well, perhaps we could ask a couple of others he suggested. A few chats later and the team grew to 5 from work and Steve who lives close by. A month later and we’re up 8 cycling for JDRF and 3 cycling for CancerResearchUK. In total there’s 21 JDRF riders starting from Crystal Palace including my team plus Nick, Mark H, Andrew whom I know from either Twitter or the Cycling at JDRF Facebook group. There’s also a lot of JDRF riders starting from Alexandra Palace about an hour later.

A few of us enjoying a rest after a cycling sportive: Mark P, Kev, Jon, Mark H
jdrf cyclists at bbq

Raising funds
We’re riding for JDRF and they’ve set a target for each person of £175 per person, on top of the £39 registration we’ve each paid. For this £175 JDRF have bought a charity place from Nightrider for £60 and on top give each cyclist a JDRF cycling jersey, which in itself must be worth £35. So in theory JDRF don’t get much money in from this event, just £80 per person if they reach their target.
A few days ago I was concerned we wouldn’t reach out target, it sat £400 short of our combined target of £1400. In the last few days though sponsorship has come flooding in and we’re close to £2000 already.
Sponsorship page is here if you want to see how we’re doing…or donate.. bit.ly/nightridertf.

Training, training, training
For some cycling 100km is easy but there’s only one of our team – Steve – who could boast this, with Shaun coming a close second, for the rest us it was going to take a fair bit of training. So off we set on our first training ride back in January, a mere 30km but a distance which seemed daunting at first.

From our first training ride
Juli, Kev, Jon, Tim, Sue, Mark, Steve, ShaunNightriderTF-1

Training rides got longer week by week, some hills got thrown in and the weather started improving. A few other friends/colleagues started joining in the rides and a few of us managed to get out each weekend.

A hilly ride around the South Downs
NightriderTF-2

We set a target for 60km on April 21st when many of us entered a local Sportive. Five of my team did it along with two other Nightriders, Nick (coming down from Derby) and Mark (coming from London), plus a friend Gemma. That turned out to be a great ride through lovely country roads and finishing with a nice BBQ afterwards.

Gemma, Kev, Juli, Jon, Mark P, Nick, Mark H, Sue
NightriderTF-3
Our first night ride last Friday
Tim, Jon, Kev, Sue
Nightrider-TF-5

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

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

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

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

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

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

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

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

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

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

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

TweetHannah

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

TweetHannah2

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

TweetPartha

Lilly Diabetes Conference

#DBlogWeek 2014 Day 4 – Mantras and More

dblog week 2014Thursday’s topic:Yesterday we opened up about how diabetes can bring us down. Today let’s share what gets us through a hard day. Or more specifically, a hard diabetes day. Is there something positive you tell yourself? Are there mantras that you fall back on to get you through? Is there something specific you do when your mood needs a boost? Maybe we’ve done that and we can help others do it too?



Amy on Indian trainFrom day one – okay it was probably more like day 101 – we tried to get Amy to be proud of her diabetes and not let it stop her achieving whatever she wanted. It’s a bold statement to make and one that on some days seems a mega-distance away but on the whole it’s achievable and spurs her and us on to do things that we probably wouldn’t have done if she’d never been diagnosed. It was around day 101 that we started planning our month long backpacking trip to India, something which made us very nervous – because of Diabetes, not India – but something which made us feel much stronger upon our return. Whenever I see photos of that trip it reminds me what a leap of faith it was, how we dealt with it and the sense of achievement we got from it. On top of that it was a bloody great holiday.

Us and Gav at end of GBR3030On Saturday at a JDRF Discovery Day in Reading there was a talk by Gavin Griffiths (aka ‘Diathlete’) who runs ultra-marathons without letting Type 1 Diabetes stop him. He started by asking the audience whether they saw Type 1 as a good thing. No-one held up their hand, although I raised mine halfway for a second before putting it down. Of course I couldn’t feel that it’s totally a good thing, to see what Amy has to go through, but I truly believe we’re all better people for it. Gavin has showed that with the right preparation and training it’s possible for someone with Type 1 to running the length of Great Britain (900 miles!).

Pretty in pinkTaking part in Gav’s GBR30/30 challenge made Amy even more determined to kick diabetes’ arse and it increased her advocacy for Diabetes. I see this in effect whenever we go to a diabetes event and someone sees her pump, which happened like clockwork at the JDRF event last Saturday. Amy had 6 or 7 adults and children all listening to every word she said as she described how having the pump has made life so much better for her and why it’s so ‘awesome’.

So our mantras could be that ‘diabetes will not stop us’ and ‘we are stronger now than before’. Remembering the good things we’ve done certainly helps when feeling down a bit.

But those mantras are no good when you’ve just had enough.

Luckily last July we attended a great event named ‘Greater Minds Inspire‘, organised by Zoe and Hedgie Pricks Diabetes, which had many inspirational people with Type 1 each talking about their achievements. Every one of them was brilliant and Amy certainly started to see that she needn’t stop doing things because of having Type 1.

But it was a video from Joe Solowiejczyk which was shown at the event that I remember when things are getting a bit much I remind myself of what he said, especially about meltdowns (about 1 minute in).

I really like the bit about planning to have a meltdown day, seems like a thing we should plan too. We let Amy have food-meltdown-days when she has whatever she wants and we deal with any glucose level issues later. She still carb counts during these days but with so many boluses and the stacking of insulin things inevitably go badly. But within 24 hours any ‘bad’ levels are forgotten and all she can remember is that she had a cracking food day.

dblog week 2014

Diabetes Education Day with Seahawks

seahawks logo
A while after Amy was diagnosed I started looking for support to meet up with other families in the same position as us, that’s when I first heard of Seahawks, the South-East Hampshire Families Group. It didn’t really occur to me to join in with something based in Portsmouth, that seemed a long way down the road – it’s 30 minutes! – as surely there would be something more local, there wasn’t.

So whizz forward to one month ago where we all attended a free cookie decorating session run by Seahawks. On walking through the door we immediately became part of a wider extended family, with many of the committee coming to introduce themselves and have a long chat. We all had a great time there, even if Sam did press-gang me into drying up for seemingly hours…I’m joking of course Sam. Amy immediately hit it off with a newly diagnosed girl, N, and we spoke with N’s parents for ages.

Fast-forward again to last Saturday and we attended their education day at the QA Hospital in Portsmouth. I didn’t really expect the event to be as big as it was but there must have been 200 people there. I already knew that the hospital backed Seahawks and everyone who attended the clinic there had been invited and it dawned on me Seahawks is one of a kind, certainly in this area.

With a room full of the key diabetes charities/companies like Bayer, Roche, Medtronic, JDRF and DiabetesUK ready to demo their wares, I spied Helen the rep from Roche/Accu-chek and I went over to get my first look at Roche’s new Aviva Insight insulin pump.

On a table full of leaflets I placed a good few copies of my ‘How social media helps us with Type 1 Diabetes’ leaflet, hoping it might help any parents currently feeling alone.

With Amy being entertained in the kids’ area the day began with an overview of type 1 diabetes by Dr Nalin Wickramasuriya. He spoke in length about the research currently being done all over the world and which one he thought might give the breakthrough. As ever this sort of info was fascinating, if not a little over the head of someone who never did Biology or Chemistry at school.

Next up came two sessions each with four options and which ones we attended:
  Session A
    1 Secondary carers – what you need to know
    2 Ups & Downs of Carb Counting– why there are glitches Kev & Amy
    3 Thoughts & Feelings
    4 Exercise Management/Having Fun Jane
  Session B
    1 Sick day Management DSN Parents
    2 Carbs – getting to grips with guestimates
    3 Thoughts & Feelings Jane
    4 Teenage Years Kev & Amy

All sessions we attended were great and gave us some ideas and knowledge for the future. I never knew for example that the more cooked a jacket potato was the quicker it would release the carbs inside it, especially if microwaved rather than baked. Over ripe bananas release glucose faster too, not that Amy would ever eat one of those.

Networking as these events is always good and it was a delight to see Sue from JDRF South and Daisy from Diabetes UK again. Bumping into N’s Dad again we arranged to meet again soon. At lunch sitting behind a family we overheard a conversation about pumps by a girl who’d never really seen one, so out whips Amy’s pumps followed by her take on wearing and using a pump 24/7, few minutes later the girl had decided she wanted one.

Sadly after lunch we had to fly (literally, blog coming soon) as Amy was doing indoor skydiving for JDRF in the afternoon, so we didn’t get to attend the rest of the day. But what a great event it was and I’d personally like to thank anyone who helped organise the event, you did brilliantly.

I’ve got a feeling we’ll be attending more Seahawks events in the future.

Type Onesie fundraising for DRWF

Raising awareness locally

Last weekend a few Twitter friends and some of their families went to Havant shopping centre to raise awareness and money for DRWF, an international diabetes charity whose UK base is quite close to me. DRWF are unique in that they are a global charity helping people with all types of diabetes.

I’ve meet a few of the DRWF team before: Sarah (the CEO) at the Portsmouth Sweetmeet in May; Claire who does the social media at the DRWF Wellness Day South day in June. There’s something quite special about DRWF, after all which other Diabetes charity Chief Executive would recognise you instantly and come over and have a chat?

When my friend Laura (aka @Ninjabetic1) came up with the idea of raising some money in Diabetes Awareness Month it didn’t take her long to figure that trying to help DRWF was the right option. And so started the conversations which led to many of us local Twitter friends meeting for the first time.

Jane, Amy and Emilia were there; Steve, Suzie and their daughter were there; Laura was there; Helen and her daughter (who has Type 1) were there; Tanwen was there, along with Sarah and Claire and her husband from DRWF. I know what you’re thinking: where we you Kev, in your onesie? Sadly – well luckily really – I was going to see Chase & Status at the O2 in London, so sadly/luckily I couldn’t buy/don a onesie and wear it out in public. Shame eh?

Claire’s husband took a video at the event, it’s pretty good, watch it and get to hear how Type 1 Diabetes has affected my family and friends and what a cure would mean to them.

World Diabetes Day 2013

London Eye and County Hall 2

Quite a lot has changed since last year’s World Diabetes Day and the release of this blog but one thing hasn’t changed: my desire to take photos of buildings lit up blue to raise awareness of Diabetes.

Luckily fate had it that my boss wanted me to attend a seminar in London and it happened to fall on World Diabetes Day, today. With the seminar finishing at 2:30pm I had the rest of the day to myself.

I had a form I needed to drop off to Diabetes UK headquarters so off I headed to Camden and met with Lucy who’s heading up the Peer Support group I’m joining soon. I wanted to meet with Amy who heads up the social media for D:UK but she was busy helping with a Google Research Hangout with Dr Yuk-Fun Liu, something I’d sent some questions in for yesterday. Afterwards Lucy took me up to meet Amy who gave me the biggest hug of anyone in the #DOC so far.

As Amy takes photos for Diabetes UK we both headed out with out cameras to capture any buildings that had turned blue for World Diabetes Day. I’m not sure Amy really had a list as she kept trying to figure out if this or that building was one. “That’s a blue circle on the church next to Westminster Abbey”. “Amy, I think that’s been there a few hundred years”. “Oh, Pizza Express is blue”. “No Amy, that’s always blue”. Anyway, here’s what we found:

The fountains in Trafalgar Square
Trafalgar Square fountain

County Hall and the Aquarium
Aquarium & County Hall

County Hall
County Hall

The London Eye with the Houses of Parliament in the background
WDD13 London Eye close up

London Eye and County Hall from Westminster Bridge (short exposure)
London Eye and County Hall 1

And my favourite:
London Eye and County Hall from Westminster Bridge (long exposure)
London Eye and County Hall 2

Whirled diabetes days: a new blog, one year on

On World Diabetes Day 2012 our new blog, Circles of Blue, went live.

What a year it has been.

A good year.
A year of dealing with diabetes proactively.
A year of diabetes advocacy.

 
whirl (hwûrl, wûrl)
verb. whirled, whirl·ing, whirls
    1. To revolve rapidly about a center or an axis.

 

“there’s now multiple series covering diagnosis, getting an insulin pump and travelling to India with Type 1”

The blog was officially released on World Diabetes Day 2012 although I let everyone have a preview of it a few hours before that day dawned. Since then we’ve written 70 posts over many subjects and there’s now multiple series covering diagnosis, getting an insulin pump and travelling to India with Type 1. It’s fair to say I’ve been blown away to how it’s all been received, not just by the #DOC (Diabetes Online Community) but by the thousands of individuals who’ve happened to find an article of use to them thanks to Mr Google. It pleases me to see that people have reached my blog after search for things like ‘can a diabetic travel to India?’ (answer:yes) and ‘can a person with diabetes get a fast pass at Alton Towers?’ (answer:yes).

It’s been a year of reflecting

Well, actually it hasn’t been a whole year, most of the reflecting was done in November and December when Amy, Jane and I wrote our diagnosis stories – full series of articles is here. Occasionally I try to re-read them but I rarely get to finish them.
One of the most read areas of the blog is the series about travelling to India with Type 1 Diabetes with the top page of choice being Cooling Insulin with Frio Wallets. I really enjoyed re-working my original blog about that trip – Monsoon Meandering – reflecting on the epic trip it was and making it useful for any people with diabetes who are thinking about travelling there.

It’s been a year of learning

This time last year we knew very little about diabetes, we just coped with it on a day-to-day basis.
Amy had just got an Aviva Expert meter which made life so much easier that I started asking the #DOC about insulin pumps. It took a while to get Amy interested, and further time for her to not faint whenever they were mentioned, but in March 2013 Amy decided she wanted a pump and on the morning of the 20th June she took her last scheduled injection and starting pumping a few hours later – it’s changed her life in so many ways.
Now, we’re looking into CGM (Continuous Glucose Monitoring) and hope that early next year Amy will starting using that.
All of this learning wouldn’t have been so easy to obtain without my friends from the #DOC, so once again I thank you all for that.

It’s been a year of attending events and meeting people

“Since April I’ve met with around 40 – forty! – people I know from the #DOC”

Starting in April we met our first two people from the Diabetes Online Community (#DOC) – Laura and Anna, who gave Amy a demo of their pumps.
A few days later We went to our first official event the JDRF Discovery Day in Bristol; the Portsmouth “SweetMeet”; the JDRF Discovery Day in Dorset; the DRWF Wellness Day; the Greater Minds Inspire event; the Diabetes UK Big Event; the Bristol JDRF Walk to Cure.
In May we took part in Gavin Griffiths’ GBR30/30 Challenge, with Amy cycling 30 miles in one day and ending it with a run up a big hill carrying Gav’s Olympic Torch.
At the end of June we had a great two days in Alton Towers with Derek, Clare and Chloe, meeting other #DOC people Philippa and Vanessa.
Since April I’ve met with around 40 – forty! – people I know from the #DOC and more importantly Amy has met some other kids with Type 1 Diabetes; they’re sure to be friends for some time.

It’s been a year of stepping up our game

Amy became as JDRF T1 Ambassador and wrote a two page article entitled – Adventures with Type 1 – for their T1 Kids magazine, appearing on the front page
I’m halfway through becoming a Peer Supporter for Diabetes UK, where I’ll man a phone line for a few hours a week, helping people with any type of diabetes. I’m excited but also nervous about this opportunity as I know I might not have the answers they need but hopefully I can help them.
Earlier this year I was asked by a neighbouring area’s diabetes special nurse to introduce parents of newly diagnosed children to the benefits of using Social Media for diabetes. I ended up creating a leaflet entitled ‘How social media helps us with Type 1 Diabetes’ which has been well received by many, be they health care professionals, newly diagnosed people/parents as well as the diabetes community at large. I’ve been so grateful to the endless retweets, posts and linking done by others in getting this leaflet out there and feel sure it’s got to many of the right people.

The icing on the cake has just arrived

Whilst writing this article a new tweet flashed up on my screen. I was amazed at its content and I couldn’t be prouder than to have a leading, respected Doctor mention this blog.

JDRF Walk to Cure – Meetups, tweetups & eat-ups

A tale of two cities

Each year JDRF organise Walk to Cure sponsored walks around the globe, with this year’s falling on 13th October for both the South and South-west & Wales regions. Right from day one I was torn as friends of mine (Becky, Helen, Sarah) were going to the event in Netley near Southampton – merely a 10 minute drive from me – and others (Annie, Mark, Chris and more) were going to the one in Bristol – a shade under 2 hours away.
With apologies given to my local friends we signed up for the Bristol Walk to Cure.

“Luke, use the force”

As we neared the university campus where the walk was starting from we saw a couple of Star Wars Stormtroopers. It seemed a bit bizarre but maybe that’s what people do in Bristol each Sunday morning…oh no, hold on, this where we’re meant to be.
*brakes screech to halt*

One hug too far

Walking up to registration and Annie spotted us, greeting us with the customary hug that we’ve become used to when meeting Twitter friends with whom I speak to more regularly than family or local friends. I looked around for Izzy, who I’d been wanting to meet for ages; there she was waiting with another hug for me.
Annie pointed me towards Rufus – JDRF’s 6 foot tall bear – who was walking towards me. “Don’t forget to kick him in the shins” she said as inside the costume was her husband.
The handshake wasn’t working between man and bear so with outstretched arms Rufus demanded a hug. It worried me how pleasingly cuddly Rufus felt but worse how long he held me for, a little too long in my opinion. 🙂

Expected and unexpected meet-ups

Recovering from my bear hug I walked into registration and was recognised by Chris who’s young son Alfie had been part of Gav’s GBR30/30 that Amy and I had been involved with earlier this year.
After, we met Mark – whom we’d met many times – and Danielle who’s on Twitter too.
Before the walkers went through a warm up routine a speech was made by Colin Rowland, whom I last saw at the JDRF Discovery Day in April. Colin and I had spoken a fair bit since April and it was great to see him; I had no idea he’d be there.

Walking to Cure

These walks are short, being aimed clearly at the youngest kids, and we opted for the longer 5km walk.
At this point the rain started. Typical!
Amy was walking in front with Annie’s kids, whilst Jane and I walked round with Colin and his wife, having a great chat about diabetes, Amy, pumps, CGM, the future, running and cycling.
At the half way point we left Colin and waited for Annie/Mark/Izzy/Danielle who never appeared. I suspected they’d employed the old school cross-country cheat tactics of waiting behind a tree somewhere until everyone returned.

Post exercise carbs & protein

As any athlete knows you need to make sure you take care of your body replenishing lost carbs and taking on protein. With this in mind I polished off a huge slice of Annie’s superb chocolate cake and we planned a trip to Nando’s… that’s an okay post-exercise recovery plan right?
Nando’s was great, with 10 of us there, adults at one end, kids at the other and me getting to sit next to the wonderful Izzy and hear all of her future plans.

Today had been brilliant.

Rufus’s finest moment

Just before the walk the walkers were put through a warm-up routine, so I’ll leave you with a video of Rufus’s finest moment:

Gatecrashing a CCG Patient Focus Group

CCG

It all started by chance

On Tuesday 17th September at the end of my first ever Diabetes UK Winchester Support Group meeting I was chatting with Lucy & Daisy from Diabetes UK and a lady came to sit down next to me to chat – I wondered what I’d said wrong 🙂 That lady was Beverley Meeson and turns out she’s the Associate Director in Long Term Conditions at West Hampshire CCG. A prominent figure in an organisation we already owe a lot to and here she was asking little old me for information. We spoke about Amy’s new pump and she asked it was one of the new ones with integrated CGM (Continuous Glucose Monitoring). “Yes” I laughed “but it’s irrelevant as the CCG won’t pay for them.” I couldn’t help myself. Oops.

Seizing opportunities

True to my word I emailed Beverley the very next day with details of our journey to getting a pump and pointed her towards my many articles on the subject.
Beverley forwarded my details to Janet Hutchings who was organising a patient focus group for Type 1 Diabetes adult care, who emailed to see if I could come along to a meeting, which was happening the following Monday.
It was going to be a struggle to take the afternoon off at such short notice, was it really worth it and could I really be bothered?
A tweet out brought replies which convinced me to go
tweet1tweet_reply_pollytweet_reply_parthatweet_reply_sarah
That was it then, I was going, if my boss would agree.

The agenda

Janet had said that she wanted an informal meeting so that it would facilitate more open discussion but at the same time wanted to discuss certain topics, so set a rough agenda:
Welcome and introductions; How did you hear about this meeting?; Your current experiences of the service (positives/negatives); What would enable you to manage your diabetes better?; What would a quality service be for you?; How could we use innovation and technology to improve services?
Woah, did you see that last one? I’d best save my voice for that bit!

Introductions by everyone there

It was quite a small affair but I think it was better this way as it gave us all a chance to speak. If there’d been too many no one would have had a chance.
The meeting was chaired by Janet of the CCG.
Patient number one was Dave, who said he was confused whether he was Type 1 or Type 2 as people tell him different things. I took this to mean that he was an insulin-dependant Type 2 as Dave seems to only see his local GP and nurses. Or perhaps he’d been missed off the lists at the hospital?
Patient number two was Andrea, who has had Type 1 for 40 (I think) years and attends a mixture of two local hospitals, one of which is our one.
Patient number three was Martin, who was diagnosed in the 80s whilst in his late 20s. He attends a different hospital and some of the same places as Dave.
“Patient” number four was me, an interloper who’s got nothing to do with adult care for people with Type 1 Diabetes.

How did you hear about this meeting?

Janet had a big list of people she’d contacted to get the message out there about the meeting.
Not one of us had heard about it from the official channels and had generally found out by chance or coincidence, something Janet felt she needed to work on next time.

Your current experiences of the service (positives/negatives)

Once everyone had gone through their list of of positives and negatives of the current system one thing became clear: all our experiences are completely different and could be labelled as the usual ‘postcode lottery’. Given that we all fall under the same CCG this seems strange and hopefully something that can resolved with some guidance.
One person spoke about how they are forced to go and have an HbA1c done at their GP’s, one month after being done at the hospital. If they don’t go they don’t get their prescription filled and therefore don’t get any insulin or test strips. I suggested to the CCG that this was a pointless time-wasting inefficient box-ticking exercise, given that a GP is not likely to suggest altering ratios or start discussing Super Bolus-ing or any some such.
Interestingly for me, I didn’t think I’d have too much to say here but it seems paediatric experiences are similar to those for adults.

What would enable you to manage your diabetes better?

Test strips and knowledgeable GPs seemed to be the consensus.
With test strips the postcode-lottery rears its head again, or more to the point it’s the subjectiveness of the GP that drives the issue. Andrea pointed out the history of test strips being refused, something that Janet paid close attention to. Part of the problem seems GP’s confusion between the two main types of diabetes. Again clear guidance and education from the CCG to the GPs should save the day.
The other three key points were education, education and education but with it a big caveat: we all agreed that courses organised and run by the hospitals were needed and we spoke about the DAFNE style courses and how beneficial they’ve been to those who attend. The caveat (raised by us patients) was that patients should not sit back and expect to be told everything, that patients should be encouraged to be proactive in their condition. We felt that the hospitals could signpost new patients to other resources, something they don’t seem to readily do at the moment.
I spoke about instant HbA1c tests and how some people had to organise a blood test weeks before their appointment. Martin didn’t understand what I meant as he didn’t even know this was possible as it seems it’s only done like this in paediatrics. But why? There’s a machine sitting there in the hospital in Winchester, why not use it!? I suggested that this would make like easier for people and at not a huge cost. Janet wrote this down to investigate further.

What would a quality service be for you?

We spoke about the 15 Healthcare Essentials; about care in hospitals; about GP’s understanding of the different types of diabetes; about access to DSNs.
I – who came prepared 🙂 – spoke about Portsmouth CCG’s Super Six model and ask whether the CCG had looked into it – they had and will investigate further.
Andrea and I spoke about the patient focus innovation that was the Portsmouth “Sweetmeet”, something both Andrea and I attended.
(I started to wonder whether I should not mention Dr Kar’s name again in case it started to wind up the CCG 🙂 )
I spoke about transition from paediatrics to adult care and may have inadvertently mention Dr Kar’s name again, along with his article Changing services can actually be fun.

How could we use innovation and technology to improve services?

Janet asked about technology improvements and how they could help patients.
I cleared my throat.
This was my time to talk.
With reference back to our discussion earlier about patients taking partial responsibility for their own education I started talking about my recently created and released leaflet ‘How social media helps us with Type 1 Diabetes‘. Luckily I’d printed a few out which I handed out for people to read.
I spoke about virtual clinics for people who have trouble getting to the hospital, access to hospital information, standards of care, social media groups run by the hospitals and so on.
I may have gone over my allotted time 🙂 Oops!
On top of this I spoke about my use of Diasend, how the hospitals can access the information and how this could help patients.

And finally

I’m so glad I attended this meeting and would like to thank both Janet and Beverley for allowing me, a mere interloper, to attend.
I think it’s great the CCG are encouraging patient focus and collaboration and look forward to working with them in the future.
Thanks.

Diabetes UK’s Big Event 2013

The Big Event

The Big Event lived up to its name with people coming from all over the UK to listen to topics about diabetes for all types (1, 2, etc.) in a single location.
It’s an awareness day very similar to the JDRF awareness days (1 and 2), the DRWF Wellness Day and Hedgie Pricks Diabetes awareness day I’ve been to recently.
I’m not sure of the exact count but I’d guess there were 500 or 600 people there so it’s a pretty large gathering.
One key element of the day for me was to meet some of the wonderful people that I “talk” to through Social Media on a daily basis and for me it was a highlight of my day.

First, the location

The event was in Hammersmith, London, certainly not too far from me therefore easy to get to. Last year’s event was in Warwick so it’s good to Diabetes UK moving the event around each year to enable access for others.
Some people though are happy to travel long distances for events like this and I met people who’d come from Nottingham, Derby, Wales and Northern Ireland. Fair play to them.

Registration and first meets

Registration was so simple and within seconds we were into the main hall where I immediately spotted a twitter colleague Dave, or was it Dave? People rarely look like their online presence do they! We’d all joked the other day on Twitter that Dave should bring his Yorkie down to give to whoever spotted him first. I tapped him on the shoulder with a “do you have my Yorkie?”. And so started my series of meetups.
Ten minutes later another tweep Rachel came to say hi proving once again that my ‘tweet a picture of today’s t-shirt’ worked. I proudly waved my Yorkie as Rachel was in on the joke too.
Then we bumped into friends from our clinic, Steve and Becky, who we’d arranged to meet there. This was already turning out to be a great day, I almost forgot we had talks to attend.

Talks, talks and more talks

Diabetes UK had gathered many talented speakers to discuss various different topics, all organised into tracks, one for Type 1, one for Type 2, one for parents of Type 1 kids and a generic one. You could pick and choose which ones to attend, there was no booking list, just turn up to the right room at the right time. We naturally migrated to the parents/schools sessions.

Session 1: What care to expect for your child

Steve, Becky, Jane and I took our places before I spotted Joe, Diabetes UK’s social media person at the event. We’d spoken online before so I went over for a quick chat. Yet another face to a name ticked off.
The talk was given by Libby Dowling, Clinical Advisor for Diabetes UK. She told us about the different policies and tariffs and just what care we should be expecting. The four of us are all at the same clinic and generally we’re pleased with the care we receive but listening others talk about their lack of care we felt quite privileged.
Two blonde haired women spoke about their recently diagnosed son, I knew one must be Karen, but which one? Finally I sussed which and tweeted her “I’m on your right, two rows back.” Next person to meet identified 🙂
The discussions around the room got quite heated as the lack of care provoked emotions.Session 1 tweet

Coffee time, some more people to meet

Back in the hall for more coffee and I spotted Simon – who has blogged about The Big Event too – and Teresa and went over for a chat and before I knew it session two was just about to start. It was hard to think we’d not actually met before as it seemed like a meeting between old friends. They introduced me briefly to Laura and Angie, two more from the #DOC.

Session 2: Pumps and continuous monitoring: basic introduction

Although Amy has been on a pump for a few months we still felt it was worth attending this session and went along with Steve & Becky whose child is getting a pump quite soon.
The talk was hosted by Melissa from INPUTdiabetes and Claire, a Diabetes Specialist Nurse and also co-founder of TeamBloodGlucose, an organisation I’ve been following for a while. Both have Type 1 Diabetes and are strong advocates for insulin pumps.
Questions were asked of the audience: who had a pump?; who had CGM?; who loved their pump?; who didn’t? It didn’t really surprise me that people loved their pumps (however on re-reading my tweet I’m surprised I didn’t spell ‘surprise’ correctly!).
Everyone loves their pump
It was great to hear Claire and Melissa speak, they were a great double act and everyone wanted Claire’s diabetes awareness dog who stayed near her the whole time. Claire spoke about CGM sensors and forced Melissa to parade uneasily around the audience.
Whilst talking about advantages and disadvantages I felt they omitted many of the advantages and bigged up some disadvantages, but I understood that they were probably not wanting to come across as saying pumping is the best solution – there’s a lot of people on daily injections who would get annoyed by that.
With the fab presentation over it was question time and some good questions were asked. Someone then started going on about her bad pump experiences and had a go for them bigging up insulin pumps. What a load of rubbish, the pump advantages had clearly been downplayed. I’m sad she had such bad experiences but that doesn’t happen to everyone and I’m sadder that her rant may put people off. Unfortunately it didn’t sound like she was going to stop going on so pretty much the whole audience left.

Amy’s Infusion Set Masterclass

After we’d eaten lunch Karen and her son introduced me to Shaun from Twitter who’d driven a long way for today’s event, yet another meet up done.
Then it was time for Amy for change her pump’s insulin/cannula/tube and it seemed to make a lot of sense for her to do it in front of Becky, Karen and their boys, both of which are getting a pump soon.
Amy took them through the whole process of drawing the insulin into the cartridge, removing bubbles, fitting the cannula, priming the tube and priming the cannula. I was proud of her for not only doing this in front of people but with the ease she did it under pressure. Karen suggested Amy does a YouTube video of it so perhaps that’s something for the future.

Session 3: Pumps and gadgets advanced

This session was also hosted by Claire and Melissa from session 2 and delved deeper into the world of pumps/CGM. Anyone without a pump would have struggled, in fact it’s fair to say that many of us in the room (Jane, me, Teresa, Dave) got a bit lost at points.
Carbohydrate counting can be tricky enough but now we were being introduced to Super Bolus and FPUs and multi wave bolusing. Eek!
Super Bolus
We learned that whilst normal bolusing is fine for normal GI (glycaemic index) foods there was a better method for high GI foods, i.e. those which would cause the blood glucose levels to spike very quickly.
Come in Super Bolus to save the day.
Roughly you ‘borrow’ some of the forthcoming x hours basal insulin units and add them to the normal food+correction bolus amount, at the same time you put on a temporary basal rate of 0% (or minus 100% depending on your pump) for the x hours.
Scott Hanselman’s “Hacking Diabetes” article has a section about Super Bolus which is worth reading.
There’s also Super Bolus information on DiabetesNet.com.
FPUs (Fat Protein Units)
This was the one that left many in the audience scratching their heads.
The idea is that extra insulin is needed for meals high in fat/protein.
Roughly you work out the calories from the meal, then work out the calories from fat & protein. With a bit of jiggery and pokery you end up with an amount of units of insulin to cope with the fat & protein, which in turns gives you the time you need to delivery that insulin over.
I’ve struggled to find the calculations themselves but DiabetesUK offered to send them to people who were at The Big Event so I hope to receive them soon. Whether or not we start to use them or not only time will tell.

Session 4: Coping with diabetes at school

Whilst I headed off to this session Jane went to hear the talk about emotional issues surrounding living with Type 1 Diabetes. I’ve heard from many that that session was one of these best of the day.
My session was hosted by Libby Dowling who was assisted by a parent of two children with Type 1. I’d met the parent, Fiona, before at the DRWF Wellness Day back in June. It struck me back then how well educated about diabetes she was, something living with 2 kids with D for many years makes you I guess.
Libby spoke about many things to do with children at school, about things Diabetes UK knew about and where they were seeking to go next.
Fiona told her story by reading an abridged version of her personal diary. It was quite shocking to hear the problems she had gone through and the prejudice and lack of equality her daughter received at school.
Parents spoke about the problems they received, the issues their schools had put them through as I sat in silence grateful for the wonderful school our kids attend. We’ve had no issues that haven’t been immediately rectified once I’d pointed out the errors of their ways.
Unbeknown to me, Baroness Barbara Young, Diabetes UK’s Chief Executive was sitting in the audience and stood up to discuss their plans, dealings with organisations and the way forward. I was impressed she took the time to attend a session and ask us what we all thought.
The key discussion that everyone agreed with was that someone at each school must be made accountable for any issues surrounding Diabetes (and other similar issues). Furthermore things were unlikely to improve until checks about a school’s equality/inclusion were properly included as part of their Ofsted report.

Summary

I thought I knew a lot about diabetes but going to an event like this proves I don’t.
I learn something at every event and that’s why I will continue to go to every one I can.
This event was great, its sessions, its presenters, its organisation and its opportunity for networking.
I haven’t really mentioned the childcare where people looked after the kids in a separate room whilst the adults were in sessions. Amy had a great time, playing all the games, drawing and playing with other kids, many of whom had Type 1 too. She’s made a new D friend of her own age and they’ve already started talking to each other online, which is great as we all know how good it is to feel the same as others.
The days after the event and we’re all still talking about how much we enjoyed the event so thank you Diabetes UK for organising it.

Best part of the day: the amazing Diabetes Awareness Dog

Claire’s dog Magic stayed by her side all day and whilst giving a talk during session 3 he started making a fuss over her. She left the room with Magic.
Melissa carried on the talk and it was a while until Claire returned to carry on with her side of the presentation.
At the end of session it was question time and the first question was “Claire, when you went out what level were you?”
Claire told us that Magic is trained to recognise a level of 4.5mmol or less.
She was 4.3mmol.
Wow.
Just wow.