Standing on her own two feet (at DPC2017)

Amy DPC1
As a parent you sometimes get a wake-up call that your job is done, that your child no longer needs your assistance in one area of their life. Be it walking to school, going to the cinema or shopping, catching the bus or train, or managing their Type 1 diabetes.

I’ve never been a fan of the they-need-to-deal-with-this-themselves-now-they’re-XX-years-old school of diabetes management, after all Amy’s got enough years of having to deal with Type 1 by herself ahead. We’ve always been a team, starting from when us parents did most of her care post diagnosis, to now where we do very little with her day to day management. There’s days when we never ask if she’s done a BG check, or how her levels have been, because we know she will have done them as she sees fit, and we know she will have changed her insulin pump set when needed. Now that she’s riding a moped the importance of BG management has been raised higher, and knowing the rules of checking/driving/hypos she manages this well too.

Disclaimer

Before reading on can I just apologise if this appears to be a bragging post, it is, I can’t help it. Sorry…not sorry.

DPC2017 – the Diabetes Professional Conference

Thursday 16th November marked another moment of realisation. Amy, aged 16, stood in front of a room full of health care professionals (HCPs) at Olympia as part of the Diabetes Professional Conference 2017 (DPC2017). She told them why she loved her insulin pump, how it had changed her life, how it had given her more time in the day, and most importantly how it helped her cope with life with Type 1 and a fear of needles. She stood there proudly showing her pump.

Amy DPC2She’d done similar stuff before, she’d spoken in front of 200 HCPs twice before but then the answers she gave were very short. She’d presented Nightscout and WeAreNotWaiting alongside me to Directors at JDRF and Diabetes UK, and to the team at Oxford. DPC2017 was different, as she stood there – alongside my friend Philippa and Dr Hussain – she answered Dr Hussain’s questions, elaborating on them with anecdotes and telling stories about school life, German exchange trips and the difference between two holidays in India, one on MDI, the next one using an insulin pump.

During ‘Any Questions?’ one HCP asked Amy about CGM and Nightscout – as that information was on the slide being shown – asking her how it helped. For me this was the epiphany, it was unscripted but Amy answered well, going into detail about how we used Nightscout to help with her GCSEs and how she felt it was a safety blanket to support her own management.

Thinking back to diagnosis I can’t imagine we’d ever have thought she’d be where she is now.

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.