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The German exchange trip – Amy nails it

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

The trip

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

Never a doubt

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

The Type 1 worries

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

Helping other Type 1 kids

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

So how’s it all going, glucose wise?

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

Germany NightscoutNightscout graph sample over 36 hours

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

* some names have been changed to protect the innocent 😉

#PWDC15 – The People With Diabetes Conference – The Sessions

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

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

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

pwdc15 agenda

Session one – Partners’ Moan

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

Session two – D in Teenagers

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

Lunch and time for Amy to shine

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

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

LCHF-dekal
…if you want to

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

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

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

Thank you, thank you, thank you

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

The event starts…prepare yourself for some name dropping.

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

Drawing up the agenda

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

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

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

 

 
I’ll detail the sessions in the next post.

PWDC15, A Diabetes Conference for PWDs by PWDs

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

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

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

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

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

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

Diabetes UK Make a Difference Conference 2015

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

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

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

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

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

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

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

Helping out our future Pharmacists

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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*

Portsmouth’s second SweetMeet – another privileged invite

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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

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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).

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

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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

Type 1 diabetes and young people – Rt Hon George Howarth, MP

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Parliament_at_Sunset

I’ve just finished listening to (a lot of) Rt Hon George Howarth MP’s parliamentary session entitled Type 1 Diabetes and Young People. It was a breath of fresh air to listen in the public eye who ‘got it’, who explained everything correctly, who wanted more support for people with Type 1 Diabetes.

Here’s a link to a stream of the debate: Type 1 Diabetes and Young People.

Mr Howarth’s own knowledge of Type 1 Diabetes is for me a sad and alarming story. As a parent of teenager with Type 1 Diabetes I worry enormously about stories like that of his daughter. Clearly if I ever meet Mr Howarth we’ll get along quite well.

So it was a first for me, listening to some ‘boring’ (perceived, not actually what I felt whilst listening) speech and actually understanding it, agreeing with it and at the end wanting to applaud Mr Howarth for holding this session. It was great to hear him praise Zoe Scott’s Hedgie Pricks Diabetes and Diabetes with Eating Disorders amongst other organisations and charities. Diabetes UK’s and JDRF’s programmes and initiatives were covered well.

What amazed me the most was the knowledge of, and some of the issues raised by, other MPs who (I guess) have little exposure or knowledge of Type 1 Diabetes. One MP raised that education needs to be given to those with Type 1 to help them avoid diabetoketoacidosis (DKA) due to Diabulimia. Another MP raised the issue about schools not supporting children with Type 1 and those that cannot inject their own insulin.

Between them they covered many things, such as the benefit for some in using insulin pumps; the Artificial Pancreas project funded by JDRF; about transition from paediatrics to adult care based on clinicial need rather than age; support and training for psychological issues; about the DWP and issues with awards of Disability Living Allowance.

This was all great to hear, that those with influence know a lot of what they are talking about and are behind many initiatives to bring Type 1 Diabetes more support than it currently gets.

Personally I’d like to thank everyone involved for taking part and especially Rt Hon George Howarth for this debate.

Diabetes Education Day with Seahawks

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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

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DRWF logoDiabetes Research & Wellness Foundation

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.

httpv://www.youtube.com/watch?v=30ioXK51uis

World Diabetes Day 2013

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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

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

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walktocure2013
Warming up before the walk

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:

httpv://youtu.be/zrMbDl3nhis

Gatecrashing a CCG Patient Focus Group

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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.