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

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

Thank you, thank you, thank you

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

The event starts…prepare yourself for some name dropping.

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

Drawing up the agenda

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

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

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

 

 
I’ll detail the sessions in the next post.

PWDC15, A Diabetes Conference for PWDs by PWDs

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

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

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

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

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

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

Diabetes UK Make a Difference Conference 2015

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

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

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

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

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

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

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

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*

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).

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

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

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

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

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.

Hedgie Pricks Diabetes “Greater Minds Inspire” event – 6th July 2013

Aiming to inspire

Hedgie Pricks Diabetes (HPD) was set up by Zoe Scott with the aim to promote greater awareness of the psychological, emotional and social issues faced by any person with diabetes (PWD). As a father I’m especially concerned about these issues affecting my daughter, who’ll enter her teenage years in a few months, and am quite worried about the number of stories I hear of teenage PWDs who “go off the rails”, who fail to realise the consequences of their lack of diabetes care now and how it may affect things like their eyesight in a very short space of time.
I want Amy to be proactive about her diabetes and to realise that she can achieve great things, regardless of diabetes and that if she puts in the time managing it she’ll reap the benefits later. In short I wanted her to be inspired and that, in a nutshell, is why we signed up for the Greater Minds Inspire event.

Introduction from Zoe Scott

Zoe welcomed us all to event, thanked us for coming and spoke a little about Hedgie Pricks Diabetes and today’s event and the speakers who we’d see later.
Zoe and I have followed each other on Twitter for about a year now and I’ve followed her progress, through winning last year’s QiC People’s Award and setting up this event. It’s difficult to remember that she’s only 22 when you look at what she’s already achieved and especially how calm she was presenting to us at this event; I couldn’t do that and I’m double her age.

Video from Team Novo Nordisk

Zoe introduced a special video from Phil Sutherland, who created Team Type 1, which was later rebranded to Team Novo Nordisk. This team contains teams of cyclists, runners and triathletes who are competing at the highest level, whilst all having Type 1 Diabetes. The cycling team is so good it’s expecting to be able to enter the Tour de France very soon.
Whilst competing in races and tours the team also promote diabetes under the banner ‘Changing Diabetes’ and help the PWDs in places they visit, such as their recent donation of 400 blood glucose meters and 35000 test strips to people in Rwanda.

Flying with Type 1 Diabetes – Douglas Cairns

Douglas spoke about being a pilot before a diagnosis which which effectively ended his flying career, or so he thought. After trying out other careers he set about trying to fly again, gaining his license to fly privately in other countries, such as Thailand and USA. He then embarked on some major flights in his private plane: flying around the world and a flight to the North Pole. His talk was very well received, the kids seemed captivated and on seeing what he’d done Amy whispered “wow” to me a few times.

Kitesurfing – Pete Shaw

I was very keen to listen to Pete Shaw talk. I’ve loved surfing (badly) for years and whilst kiteboarding seems out of my reach due to fitness, it’s great to watch. Pete started his talk with some photos of people kiteboarding, racing on top of the waves, jumping waves and getting some air; I glanced at Amy with her jaw dropped and she turned to me and said “I want to do that”.
Pete explained that having Type 1 didn’t hold him back, he just had to plan a little more and he spoke well about the safety bits he does to make sure he can enjoy the sport and stay safe. He mentioned that people with Type 1 Diabetes could do anything; kitesurfing, rock climbing, base jumping.
“Base jumping” said Amy “what’s that”.
“Amy, he’s got that wrong” I smiled “you definitely can’t do that” said the worried parent. (I explained later that of course she could do it but after seeing some videos she decided not to pursue that idea.)
His key message was that the kids in the audience could do some really great extreme sports, with just a bit of planning ahead. As a parent I was pleased to hear this.
In the lunch break Pete let us all have a go on his Indo board which was great fun, if not incredibly difficult. Amy was a natural at it.

Climbing Mount Kilimanjaro – Dilan Shah

Dilan Shah was manning the JDRF stand during the day but was also a speaker. He spoke about how he had a lack of control of his diabetes and how he wasn’t sporty at all. Until that is the idea of running the London Marathon gripped his imagination and something he completed in 2007, albeit in a slower time than he’d hoped for. He returned in 2009 to complete it again, this time in an impressive 4 hours 30 minutes.
In October 2011 he climbed Mt Kilimanjaro in Tanzania, raising money for JDRF on the way. He spoke about his training, his expectations of insulin management from the advice he’d been given and the reality of walking up a mountain for up to 16 hours in one of the days. 16 hours!
He ended his talk stating that he believed that Type 1 Diabetes would not stop him accomplishing his dreams, reinforcing a common message running through the day so far.

From Coach Potato to Ironman Triathlete and Channel Swimmer – Claire Duncan

As the title eluded to Claire never grew up with dreams of being an triathlete or channel swimmer, instead focusing on a music background. She spoke about how she found that she liked running and swimming, entered some sprint triathlons and ended up completing an Ironman 140.6 triathlon. That’s an amazing achievement in my eyes and I could see that Amy was impressed: she knows how hard it is to cycle 27 miles, let alone a 112 mile cycle ride, sandwiched between a 2.4 mile swim and a 26.2 mile run.
She spoke about swimming the English Channel, how freezing cold it was and the weird sensation that a jellyfish sting gave her as it warmed her up as its poison worked its magic!
Claire gave out the message that there will always be some sport or fitness that you will enjoy, you just need to find it; that you don’t need to be the fastest, the longest, the best, it’s okay to do it in your own time. By doing this Claire has completed marathons and the hardest triathlon in the world.

Running from John O’Groats to Land’s End

Next up was Gavin Griffiths to talk about his recent challenge where he ran from John O’Groats to Land’s End covering 30 miles a day for 30 days. Many of you will know that I got involved for the last four days and Amy and Jane cycled for one day.
Gavin spoke about his challenge and showed photos from some of the days, telling us stories of how people he hadn’t even met before pulled him through the challenge, offering lifts, beds, meals and support.
A big part of Gav’s challenge was to inspire type 1 kids and as he reeled off the names of a few – Beth, Angel, Danny, Tom, Alfie, Mimi, Amy – it was clear that he had achieved that goal. More exciting for my family was when he started to speak about the last week of the challenge as he spoke about the great involvement from my friends: Chris and his son Alfie (pictured top) who ran into Bristol with Gav; Annabel and Jeff for driving/running for two whole days with their type 1 daughter Mimi running with Gav into Taunton. Gav then praised us (pictured bottom) for our support and mentioned what a great effort Amy had made on the penultimate day.
Take a look at some videos of the kids who took part in Gav’s challenge.

A wall of emotions

There was a set of boards at the event where the kids could write down their feelings about diabetes, the bad bits, the sad bits, the good bits and their inspiration. Many kids had written their feelings for all to see and I know that everything Amy feels was represented on the boards. Hopefully some of kids realised that they’re not alone in the way they feel by reading the thoughts of others.
Here’s just a few of the things that were written:







Finally…I had a feeling I knew who’d written this one

I was happy to read this, it was half the point of getting involved with Gavin’s GBR30/30 Challenge in May, and getting Amy cycling for the day and running with Gav’s Olympic Torch.

In summary

It was over a 5 hour round trip for us to attend this event but I’m so glad we did. Events like this don’t come up often – or in this case ever before – so it’s worth going the extra mile (literally) to support them.
I know Zoe had hoped that more people had attended this event but I’ve seen less people at events organised by the big charities. The event was very well put together and Zoe should be applauded for achieving this.
Each and every speaker was superb and whilst they all had their stories to tell they all shared a common message: your diabetes need not stop you doing great things.
Amy left the day inspired.
Right, must go, apparently I’ve got to look into Kitesurfing lessons for kids!