So this weekend was the first time in my adult life I’d been in a group of more than 15 diabetics who weren’t nervously waiting to be talked to by the consultant. I was willing attendee of this site’s official favourite charity Diabetes UK at The Big Event held at Warwick University – confusingly located near Coventry.
After initially grabbing our name-tags at registration we then went out to the sports hall where the complimentary childcare was being organised and deposited two excited children. As they were also looking after diabetic children we managed to skip the detailed drop-off required for those kids with more specific medical requirements. The childcare was run jointly by Fit4Sport and Diabetes UK volunteers and their families.
On return to the main building we were met by the charity’s President, Richard Lane. A wonderfully welcoming man who seemed very impressed by my parents’ decision to get me a life membership soon after diagnosis. He then called over Barbara Young who was less impressed and gave a smiling comment of “Well, we have made a net loss with you haven’t we.”
We then proceeded upstairs to the Exhibition Hall (a slightly grand name for a large conference room) to see stands from some well-known and not so well-known names in the field of diabetes care. Those present included Bayer, NIHR Diabetes Research Network, Mylife Diabetes Care, Lacorium Health, Cellnovo, Mind, Abbott and Diabetes and Diverse Communities. In this room was also a constant supply of coffee and biscuits and a Zumba area in the corner that sadly always looked empty even with a willing instructor trying to entice non-willing participants.
The final corner was filled with three small ‘networking’ tables that always seemed full of attendees talking about various things. We had a look at most stands and had a good talk with Bayer who were promoting their new XT meters that use the newer type of strips that promise an accuracy of 10% variance instead of the usual 20%. If true this is fantastic and I have a meter already at home to try but haven’t had chance yet. I asked if the new strips would be added to the Link machine for Medtronic Veo users and, yes, this is going to happen but it needs approval from Medtronic first, hence the delay. Once produced the representative expects it to resemble the Contour USB design instead of the current Contour shape. I fed back that for me case size is also key and this was backed up by others there but whether this gets back to those that make the decision is unknown.
There were always five workshops on offer, split into appropriate categories. As an adult male T1 my choices were relatively easy.
- Workshop 1 10:30
Subject: Healthcare Essentials: What diabetes care to expect (Type 1)
Delivered by: Su Down, Nurse Consultant Diabetes and Simon O’Neil, DUK Director of Care, Policy and Intelligence
- Went through all of DUK’s 15 Essential Checks.
- Largely discussion based with many examples of poor / inconsistent care.
- Details were added to the bones of the essentials with pearls of wisdom such as that you should ask the person checking your feet if in clinic or GP whether they are trained to know what to look for. More info here
- The first time “Insulin passport” has been mentioned to me. For those like me that don’t know; by the end of August every diabetic should have a passport given to them– small credit card sized note – that shows which insulin(s) they use and how it is supplied – vials, pens, cartridges etc.
- First instance of Diagnosis Top Trumps that kept me and Laura giggling for the rest of the day as everyone seemed to start their statement with “I’ve had diabetes for xx years”. I think it was compulsory to be used as a badge of honour but we missed that instruction at registration.
Overall a good session with plenty learnt but a little short on time as an hour wasn’t enough to discuss each ‘essential’ with participant interaction along the way.
The interval gave a chance for refreshments and we spoke with Chris and his wife about the benefits of pump over MDI. The hard-sell was going well until approached by one lady who opened with “Oh, you’re not pumpers are you? I’m trying to stay away from them as I hate mine and am trying to give it back.” Once again this proved #teampump isn’t for everyone.
Workshop 2 12:00
Subject: Group workshop – Living with Type 1 diabetes
Delivered by: Dr Katherine Barnard, Health psychologist specialising in diabetes care and Nigel Jenner, Diabetes Care Event Organiser
- Group whinge about how hard it is to live with diabetes and the issues we face with other people and healthcare professionals.
- Although I’d hoped for a bigger discussion on ‘how’ to deal with the downs of living with diabetes it was more focused on everyone releasing their issues and agreeing everything is crap. A little hard to comprehend as not everyone does face a challenge in every moment of every day
- One useful fact picked up from attendee Anne Cooper was that the Department of Health consultation on food labelling ends public consultation on 6th August. If you like carbohydrate details on your food packaging and would like it even better you must tell them. Now! Go do it. The rest of this piece will still be here when you get back!
Nigel was one of the most inspiring diabetics I’ve ever met who’s achieved so much in sport and life and hasn’t hidden his diabetes away at any stage with fantastic control results. However, the body language between him and the Doc was fantastic as he explained to the room of people who were at full moaning-speed that he achieves great results by testing every hour, every day and rarely strays from a range of 5 to 6.5 mmol/L. This was paired with Dr Barnard saying that having a 13 or 15 at sometimes wasn’t an issue and we shouldn’t worry about it all the time. Daggers flying all around the room from the presenters and participants alike. Hilarious.
Lunch was a chance to see the kids and we expected at least one to want to come and spend the rest of the day with us. Nup, they were having too much fun to even think about it so we retreated back upstairs for lunch. All food was packaged which was excellent for those in the room counting the carbs but it proved the point made by Anne in the last session when the chocolate muffin labelling had the carbs shown per 100g but didn’t say how heavy it was!
Workshop 3 14:15
Subject: Pumps, apps and other gadgets
Delivered by: Chris Cheyette, Senior Diabetes Dietician at Kings College Hospital and Melissa Ford-Holloway, a professional diabetic (not her official title but you know what I mean).
- The room was packed for this one and it was delivered expertly although at speed. Again this was due to a short time to discuss a very wide range of topics.
- They went through the history, present and a little bit of the future of pumping, CGM and diabetic tech.
- Signposting was given to where to look for further information on each section which was very useful as it was hard in an hour to cover everything in detail. One useful bit for me was that an update to the Carbs & Cals iPhone/iPad/iPod app is coming shortly.
Maybe splitting the session between those who have pumps and those who don’t would have been beneficial? I found it very informative but I was aware what the terms they were using meant. A few times people asked “What does that word mean?” Not a criticism on the attendees or the presenters but maybe something to consider for next time.
The final break was a chance to speak to Chris again and he said that today had given him the knowledge and confidence to be a little more demanding at his upcoming annual review and would be discussing a temporary CGM to investigate his morning highs and also the possibility of a pump going forward.
Workshop 4 15:45
Subject: Research update: focus on Type 1 diabetes
Delivered by: Dr Timothy Tree, Senior Lecturer, King’s College London introduced by Richard Lane, President of Diabetes UK
- A very informative and fairly detailed presentation on the history of research and where it’s going forward on the causes and cure of T1. Pitched at a level that most, if not all, the room were comfortable at. The use of Lego men certainly helped explain the more scientific stuff in a much friendlier manner.
- As with most presenters during the day Dr Lee was a diabetic and this always helps to get the attendee to buy into what he was saying.
- Fact of the day that my son now loves is that Egyptians in 1500BC identified diabetics by getting them to wee into the sand next to a fit person and watching which pile of wee the local ants went to identified which had sugar in their urine. And this developed in the Middle Ages to the doctors tasting the urine himself. Ew, but the kids loved that!
- Dr Tree’s research believes the cause is genetically based and they are working on ways to counteract the ‘bits’ that attack the other ‘bits’ that create the insulin – overly simplistic interpretation but I’ve slept since then.
- The key thing for me was that their research has proven (to them) that any cure might not be restricted to those recently diagnosed with some evidence that even after 50 years the vital cells were still present in lower numbers.
A truly engaging presentation from a man who definitely knew his stuff.
We then went to pick up the kids who’d had a fantastic day and hadn’t missed us at all. Not even a little bit. Thank you to all those who had the unenviable job of corralling a wide age range of kids together.
Overall a really good day with some real highlights and not all of them intentional.
- Meeting other diabetics and discussing standards of care and what is / isn’t available in different parts of the country. Meeting other diabetics wasn’t a frequent occurrence to many we spoke to.
- Childcare facilities meant that we weren’t always worried about kids being bored or having them distract us.
- Central(ish) location meant it was accessible for a large chunk of people.
- Low cost. As a member I was able to buy a family ticket for two adults and two kids for £25 and that included refreshments and the aforementioned childcare. Bargain!
- Meeting the people involved with Diabetes UK who organized the day pretty slickly.
- Seat shortage in some rooms as the venue was a little limited in size for the numbers there.
- Some sessions were overly general so time got eaten up very quickly where more detail might have been given.
- The general relaxation areas were a bit small so it was sometimes hard to mix with other attendees located in other rooms.
- The exhibition lacked a few key attendees. I would have liked to have seen Roche and Medtronic whose products I use mostly. Maybe the simultaneous INPUT roadshow up the road in Nottingham was a factor there.
I know another event is already being discussed for next year and I’d recommend it for anyone touched by diabetes as it gave some new bits even for an old hand as me – in the Diagnosis Top Trumps scale I think I rank as a Lancia Delta Integrale in the Supercar Top Trumps from the 80s.