As I have stated in previous reports, for legal and regulatory reasons, it is not possible for a person with diabetes to attend a healthcare professional conference, unless they are indeed a healthcare professional themselves. In past years, the goings on of the Diabetes UK Professional Conference has been reported out via Twitter and various blog posts, as a number of us bloggers have been invited to attend. Whilst this is a good way of getting the headline information out to the people living with the condition being discussed, it does not get the detail of the sessions out to the wider audience.
So this year, in response to feedback from those of us with diabetes, DUK took the unprecedented step of extending the conference by an entire day to bring us the first ever Diabetes UK Professional Conference Insider event. Designed especially for people living with diabetes and their families, it brought us selected topics from the healthcare professional conference delivered in a day of plenary and parallel sessions to an audience of over 250.
There was a real buzz in the air as delegates lined up for registration and went through into the conference area. Seeing old friends and meeting new ones. It’s a feeling that is hard to describe. People that spend every single second of every single day with their condition. No breaks. No holidays. Family and friends are of course supportive, but (with no disrespect to any of them) they don’t fully understand how it feels, and to be honest, we hope that they never have to. Suddenly these people are with others in the same boat, people that “get it”. They are in the majority rather than being the exception. This is peer support at its best. If nothing else had happened that day and everyone had just stood around chatting to each other, then the majority would have left feeling motivated and empowered. However, there was a full day programme still to come……
Following on from the opening words from Chris Askew, DUK CEO, was the Banting Memorial Lecture - Diagnosis matters by Professor Andrew Hattersley. An incorrect diagnosis of any kind is an issue, but when it comes to diabetes it can mean that the PWD can be put on the wrong treatment plan from day one, and could possibly stay on it for the whole of their life. Prof Hattersley went through the main types of diabetes, MODY, Neonatal, Type 1 and Type 2. The first two are due to genetic “spelling mistakes” and rather than be treated by a lifetime of insulin therapy, as they would be if misdiagnosed as Type 1, they can be treated by oral medication instead. Misdiagnosis of Type 1 and Type 2 is common. In fact, our own UK Prime Minister was misdiagnosed as Type 2 at the start of her life with diabetes. The best way to diagnose whether it is Type 1 or Type 2 is a c-peptide test. This shows how much insulin the pancreas is still producing, but it is not routinely used. It used to be an expensive test but now is only £6. I wonder if any of the delegates will be asking their clinic to have this test run now that they have this additional learning from the event? The key message from this session was that Diagnosis Matters. It really matters and it need to be right. The advice to all healthcare professionals from Prof Hattersley if the treatment plan for a PWD isn’t working as it should. Check the diagnosis. His words “if you can’t be right, be humble”.
You could have heard a pin drop during the lecture. I personally learned more about the other types of diabetes discussed than I ever would have from reading any medical publication. It was pitched perfectly for the audience.
A short coffee break which saw the buzz of the pre-conference discussions increase in volume was followed by the parallel sessions. Of course I was unable to attend all of these as they were split out into different rooms, so if you’d like to see the programme with a summary of the session content, then you can find it here.
After lunch, and some great discussions amongst the delegates about the mornings sessions, everyone came together for the afternoon plenary sessions.
First up was a great friend of mine, Bob Swindell on the subject of diabetes stigma and the use of language. I wrote about the importance of “Language Matters” in my previous post, and Bob expanded on the work that is going on in the UK to develop a diabetes language statement, with which he is closely involved. He also discussed his experience of diabetes stigma as a person living with Type2 diabetes, giving examples of the stigma propagated by the media and the assumptions that people make about diabetes and weight. Bob also talked about his passion for Park Run and the work he is doing to encourage other PWDs to exercise as part of their diabetes management.
Next up was Dr Partha Kar, Associate National Director of Diabetes, NHS England and some bloke who calls himself the Grumpy Pumper…….
I was an honour to be asked to speak at this event on the subject of Social Media and Peer Support along with Partha.
Following on from Bob is never easy as he is an eloquent speaker. Speaking before Partha was never going to be easy as he is a professional and an expert in his field.
So in a seamless transition from Bob’s talk to mine, I found that my slides had not been uploaded to the computer. Great start right? So whilst Partha (who had a copy on a memory stick) and the Tech guy bailed me out, I stood grumpily and watched my blood glucose levels raise sharply on my CGM as the adrenalin kicked in……
Tech issues sorted I ran though my slides, only interrupted the once as my mobile phone rang as I’d forgotten to turn it off. Like I said, I’m not a professional speaker, I’m just a bloke with diabetes.
I ran though my life with diabetes and how I came to end up on social media. How it showed me the value of peer support. How it motivates me to carry on managing my condition and to try and do the same for others. For me, peer support is the most important non clinical diabetes management tool I have. However, as stated above, peer support can be face-to-face too and not just on social media. I can be anywhere and you can pick the format that works best for you.
Have a Chat
It’s all peer support……
Partha followed me, reiterating that when using social media, you need to be respectful of others. Just because we have the same condition doesn’t mean we will all agree with each other. That’s ok. Debate is good, but keep it nice. He then went on to discuss how he uses social media to learn from the people with diabetes that he interacts with. He himself does not have diabetes and finds social media to be a great educational tool. He also uses technology to ensure that the PWDs under his care can always get hold of him for advice if they need to be it by email, phone or whatever means works best for them (but not Snapchat!).
The final session of the day was a panel Q&A taking questions from the floor. The panel members were Dr Partha Kar, Dr Denise Robertson, Professor Roy Taylor, Professor Susan Wong, and Dr Kirsty Winkley.
Chair of the session was Alex Ritson. Alex was diagnosed with Type 1 diabetes at the age of 18. He is now the presenter of the news on BBC World Service Radio and in December 2017 he had a hypo live on air which he describes as “my worst ever day at work”, although he has turned it into a positive for others. I personally heard this happen live and think that it perfectly demonstrates how hypoglycaemia can affect us even doing the things we usually do as a matter of routine. If you want to hear what happened, you can listen to the recording here.
There were a lot of great questions from the delegates ranging from ones about the information we had learned in the sessions, through to availability of technology within the NHS.
Closing words came from Bob, who thanked Diabetes UK for putting on such a great event and the speakers for their time and words.
For me and every other delegate that I spoke to on the day, this was a fantastic, informative and motivation event. I hope that it will become a permanent fixture at the conference.
If you are on Twitter and would like to see the tweets and pictures from the day, then please search for the hashtag #DUKPCInsider.