A weekend of type 1 diabetes might not sound like the perfect mini-break to a lot of people but for me it was just what I needed. For a number of years, I've read all these fabulous blogs by people with diabetes and about all the events they go to where they meet so many people like themselves, like me, and where they learn so much about what's going on in the diabetes world.
I've always been a smidge jealous of them. Until a couple of years ago when I discovered one of the largest Diabetes Conferences for PWD in the world also does a United Kingdom version. Finally, I got a chance to join in this last August.
It was a weekend of being surround by people & children with diabetes, whose names, I have no idea of, but I felt like they were friends. A weekend organised to make life less difficult for everybody (carb counts over all the food in the restaurant). A weekend where the medical professionals joined in the fun with us, like they were one of us (and a lot of there were). A weekend where even the talks I thought weren't relevant to me taught me something.
I have also never, NEVER been in a room with so many insulin pumps in my life!
I'm going to break my summary down into a number of parts, my last count was 5 but I think I can reduce that to 4; for your sake.
Summary of the Conference Part 1.
The first talk we attended, bright and early in the morning was a NHS Update. We didn't think that this one would be relevant to us being under the HSE system and were inconsiderate & lackadaisical in attending (i.e. we were late) but I did regret missing the beginning. Serves me right.
The NHS update was presented by Dr Fiona Campbell, a consultant paediatrician and diabetologist at St James's University Hospital, Leeds. She started the paediatric pump programme in Leeds in October 2002 and 90 children currently attending the paediatric diabetes service use a pump to control their blood glucose levels.
I had assumed that this presentation would have a negative influence on me and be full of the woes of the NHS and how nobody can do anything about it. Dr. Campbell was quite the opposite; she talked about rocking the boat but being able to stay in it. She gave the impression that any problem that came her way always had a solution. Funding was an obstacle but always possible to get around. She was so refreshing.
Her talk was that of someone who very much wanted to improve diabetes care for young people and someone who doesn't accept that it cannot be done.
She says that the NHS has evolved from a culture where clinicians used to ask "why are kids on pumps?" to now asking "why aren't they on pumps?."
What did I learn?
I learned that the countries Ireland should be looking at to do a better job of providing good diabetes care are Germany and Austria (funnily enough, Germany is the country that paved the way in terms of structured type 1 diabetes education, eg DAFNE and Berger), as they have the best outcomes for Children & young people.
I learned that in that same list of all the countries in the developed world of Diabetes Control in Young People aged under 25, the UK countries (including Northern Ireland) and Ireland rank last to 5th last. Ireland being dead last. I took a photo using my iPad of this slide to try and remember where and what this list was but unfortunately to photo was too blurry.
I learned that maybe Ireland needs to extend the national Paediatric Diabetes Under 5's programme to the Under 12's.
I learned that Ireland should be using more of a network approach to our diabetes care. All of our diabetes clinics should be linked together, communicate with each other, and help each other do better and not compete with each other and resent each other. Instead of every clinic provide a their own service with no standard, they should all have the same service to a high standard (paraphrasing from Dr. Campbell).
I learned that I can chose to be a trouble maker or a rebel. I chose rebel:-)