Saturday!!!! Conference day!!
Where we were staying didn’t have its own restaurant. We stayed in a Travelodge just off the M1. So breakfast was a bacon roll from Greggs, or if I’m talking about our son it was a roll with sausages.
We left in plenty of time to travel to and find where the conference was being held. We were really unsure of where it was being held, we’d “Google Earthed’ it and could only see to the main road as it seemed to be in some huge factory type area, passed a set of security gates. At least we knew what sort of area to look out for.
We found the area easily enough and were let in through the security gates, but we found that that was the easy bit, for a very short time we got a little lost. If we had entered through a different set of security gates we would have been fine as the building was then right in front of you. Instead of helping to look out for the building I decided to Tweet about it 😀 . Then all of a sudden, after driving passed it twice, we spotted the banner on the front steps.
As we pulled into the area we were going to park in I saw a familiar face from Twitter. It was Jules or better know as @Jules1315 on Twitter with her husband and son. As soon as Allun had parked I jumped out of the car and made myself known to Jules. There were hello’s and greeting’s passed between both families. It was fab, these Twitter PWD’s (People With Diabetes) were actually real people!!
As we made our way towards the building more people crossed the road (I recognised a few faces from Twitter) and they obviously knew Jules too. We all stopped outside the building whilst chit chat & greetings went on. Then someone suggested we all move into the actual venue 😀 . As we walked up the steps someone with a video camera filmed us arriving.
We arrived into the conference room that already had people, who had arrived, chatting and having a cuppa.
As I walked in I was greeted by Adrian & his wife. Again it was fab to put real life people to Twitter profiles. We went and grabbed a cuppa and there was also a fab hypo table with all sort of goodies on including the homemade cakes. Our son went & made himself comfy with the iPad, where he stayed for most of the day!! We didn’t here a peep out of him. not one complaint that he was bored! Just as I’d finished getting my cup of tea I saw someone making their way to me with a big beaming smile, it was Lavina (who used to be on Twitter). She had already been chatting to Alan, Philippa (@t1pippop) and her hubby and introduced me to them (again Alan & Philippa I already follow on Twitter but I wouldn’t have recognised Philippa from her profile pic). Next I was stood near the room entrance as another Philippa came in. Philippa recognised me, it wasn’t so easy the other way around again as her profile pic is a Lego figure, it was great to put a face to the name (have I said before that it’s fab putting real life faces to Twitter names?). Liz Warren arrived with Philippa (@flipper1) & they introduced me to Matt, “who doesn’t tweet much” (so I’m not really sure if I follow Matt or not, if I do please say hi so I know who you are 😀 ). I also met and chatted with Rachel, Lindsey and Sam. If I have missed anyone out, first I’m sorry and second please let me know and I’ll add you to this blog
Once we had all found seats BGBingo was explained. For those who don’t know what #BGBingo is, at the end of the weekly Tweetchat you find out our BGL (Blood Glucose Level) after a random number is given, you then post a pic of your monitor/CGM showing the result and the person with the closest number wins! I’m presuming that overtime the #naughtystep was introduced by someone when their BG was “out of range” and it’s become a bit of a fun way of sharing a number that you’d rather not see. So during the day at the conference, at a given time, a random number would be chosen, we would then find out what our BGL was, write in on a sticky note and stick it to one of the glass panels. Yes there was a “naughty panel” too, which unfortunately I spent all day on due to a cold. My fist reading was 16.2mmol (Also it wasn’t too long after a bacon roll breakfast either, they are my excuses and I’m sticking to it 😀 ). There were quite a lot of us making our way to the #naughtystep .
As this was a conference for PWD (People with diabetes) by PWD we were the ones deciding what would happen throughout the day. We were then given a moment to decided what we would all like to talk about, find out about, have support about etc. Each person that would like to came up and explained what they would like a workshop to include. There were going to be 3 workshops during each of the 4 sessions for us to chose from. Below is Liz Warren explaining what she would like and it was added to the day’s agenda.
When all the slots were filled the day look like this :
For the first session I went into the Tech workshop whilst my husband Allun went into the “Partners moan” workshop. I arrived a little late and the room was already crammed with people so I squeezed in on the end. During the Tech workshop the discussions were all about insulin pumps, CGM’s (Continuous Glucose Monitor’s), Abbott’s Freestyle Libre and combinations of these. People explained about how these different items have impacted their lives and their diabetes (their lives with or without them). Some people talked about their reluctance to go on to pump therapy when offered it, how they wouldn’t like tech attached to them. Others said that they had felt the same but would never go back now. Whilst others spoke about their desperation to go onto pump therapy and how they have been fighting for it for a long time without success and all the talk that usually surrounds problems faced when wanting an insulin pump. There was also a lot of head nodding in support. Lesley from Input was in the session and was able to give advice to people. I also noticed that she was very busy during the day with lots of people catching up and asking for advice.
Some of the comments I noted down about tech use are as follows:
- “It gives me more options to deal with it (diabetes). I have less high highs and less low lows!”
- “I’ve got my life back”
- “It’s empowering”
- “It’s quicker”
- “My expectations have changed hugely”
- “Life has been made easier”
- “Ability to alter dose throughout the day”
- “I haven’t had one single hypo since I’ve been using a CGM”
As you can imagine there were also a lot of questions asked and people who are actually living it were able to share their experiences, good and bad.
We were told that there will be new NICE guidance out later this year.
Next was luuuuunch and a chance to have a chat with others.
Before the next session was #BGBingo again! “What????” I thought, “we’ve not long finished lunch.” It was going to be the “naughty step” for me again, along with quite a few others. 😦
Session 2 – Allun and I went to the food/diet/excercise workshop. There were so many of us that we relocated ourselves to a rather larger corner in the main room. There was a lot of discussion about Low Carb High Fat (LCHF), Reduced carb diet, Paleo diet, Low GI (Glycemic Index), bolusing for protein. Most people were just wanting to avoid the after meal spikes and keep their BGL’s as steady as possible. There was discussion about treating hypos, what and how much people use. Also people chatted about exercise and how it affects their BGL’s. Again lots of questions were asked and people shared their experiences.
Session 3 – We went into the what was suppose to be #GBDOC & T2 (Type 2 diabetes) about getting more T2 people involved in social media. There were only a handful of us and none of the T2 people, so after a short time we went rouge and just discussed a few things.
- Auto-immune conditions – there were 3 of us with T1 (Type 1 diabetes) who had a parent with hypothyroidism, another auto-immune condition.
- Our diagnosis stories. Two had been diagnosed as adults and 1 as a child.
- Carb counting and diabetes education or lack of both in some cases.
There’s something I’ve forgotten to mention. During the day the cameras kept on rolling. Not only doing individual interviews with some people but during workshops etc. The camera came into our rouge session just as I was talking about something. If it ever makes the final cut I hope I’m making sense and not getting all tongue tied because a camera is in the room!!
Next was #BGBingo again and yes you’ve guessed it I was on the “naughty step” again.
I’m not sure what happened to Session 4?! I seem to have missed that one.
At the end of the day we all came back to the main area. The evenings “Social” details were explained. Everyone thanked for attending and a few other details. Then it was #BGBingo prize time. It wasn’t quite as everyone was expecting. The prize was carried out and explained what it was. There was a lot of of excitement in the room, it was a Dexcom G4 (donated very generously by Team BG) and it was going to someone from the “naughty step”, unheard of!!!! Woohoo, I was definitely in with a chance. Unfortunately my name wasn’t called out but everyone one was thrilled for the lucky winner and rather envious. Then they carried out another one! This time everyone who’d made it to the “in range” wall was in with a chance. Again everyone was thrilled for the very happy winner.
I’ve pinched this from the conference webpage.
At the conference there was also a Swop Shop table where people brought items that they no longer needed and others could freely help themselves to items they needed. There wasn’t a lot left on the table at the end of the day. Our son had had his eye on a backpack on the table but had been told no by me. As we were leaving he saw it was still there and asked again. I relented this time as most of the others had already left. He was very happy and informed me that he is going to use it on his upcoming school camping trip. Just before leaving we were all asked to help empty the goodies table so again my son did as he was told and helped himself to some cookies. Here he is with is stash.
Before leaving I caught up again with Lavina, she pointed out a few other Twitter people to me and we swopped mobile numbers and agreed to catch up sometime, somewhere in the evening. That was the end of the conference, but not the end of the day as there was the social that evening in Nottingham. I really enjoyed the conference and, if able, we will most definitely be attending next year. Looking forward to #PWDC16.
I’ll probably write another blog on our evening in Nottingham.
Thank for reading this rather long blog.
ADDITION (16-03-15) – I forgot to say that I met Emma and Rita at the conference. I hadn’t connected with these two ladies before the conference. We are now connected on social media. In fact I think Emma was introduced to the #doc on Twitter whilst at the conference. Hi ladies 😀