Talking About Diabetes - #TADtalk2016

By its own definition, Talking About Diabetes was a "conference aimed at inspiring people to “think differently” about their condition." This was a meeting about care, not numbers. About the future, not dwelling on the past. After 50+ years of living with T1D, Lis Warren was "content and happy living with Type 1 Diabetes" and has now "found peace with diabetes." On the off-chance that a cure is more than five years away, more than anything - more than tech, more than new insulins - I'd like our Janki to find and retain peace with her T1D in the years ahead.

Most poignant question of the day. Sums it up. X #TADTalk2016 https://t.co/1uaMerARO1

— Partha Kar (@parthaskar) March 12, 2016

If you've arrived at the this page expecting a full run through of each talk, then please press back now :-) Others will no doubt be compiling their resume of each talk in more detail and, giving each more justice than I can do in the time I have available to put this post together. I want to give you a flavour, an idea, of what it felt like to be at TADtalk2016. As such, I've tried to gather together themes, strings of thoughts presented and some of those that were spinning through my head.

For a brief bio of each speaker, please visit here. Apologies to any of the speakers if I've mis-remembered the sessions, misheard something during a pump alarm or just not been able to read my writing ;-) Please feel free to get in touch via Twitter or Facebook.

You are Not Alone
Joe Eldridge described how T1D can be a lonely disease. I know that even at age four, our little one can feel different and isolated, particularly at school. But he went on (brilliantly) to describe how managing Type 1 should - ideally - be a team effort (and hence the formation of Team Type 1 and eventually Team Novo Nordisk, an inspirational story).

Lis Warren followed this up, expressing how important peer support (online or face-to-face) had been for her during her 50+ years of living with Type 1. Anne Cooper, also living with T1D for decades, thought that T1D generated an inner resilience, using her personal network and peer support to learn how to bounce back, adapt and change goals, living each day and ensuring T1D did not define her.

Empowerment
Partha Kar set the ball rolling, reminding Health Care Professionals (HCPs) that they are the ones who can learn from people with Type 1 Diabetes. A theme of moving away from (obsession) on the numbers (e.g. the HbA1C) and focusing on care emerged strongly. Laura Cleverly asked HCPs to focus on the person and not T1D and to talk in terms of what they - the HCP - can do to help them achieve their goals. And having support and self-motivation to achieve these (ever changing) goals was also a raised by Anne Cooper.

It took me back to my very good training when I first started face-to-face clinical work (mainly in oncology). My training was not particularly structured or protocol-driven: it was perhaps at the end of a different era. It was driven by common sense and empathy. I was taught to put the protocol checklist away (but not ignore it) and listen. Connect. And listen again. That takes a few more minutes than rattling through the check list. These days in our constant state of rush - on both sides of the consultation table - is that where we are going wrong? Indeed, Jamie Reed, said that the overwhelming response he's heard from clinicians regarding T1 care is that there's not enough time. (And not enough money of course, but those two are related.)

Several speakers - and in the Q&A sessions in-between - raised the psychological impact of T1D. Encouragingly, Jonathan Valabhji (National Clinical Director for Obesity and Diabetes) did respond saying that more emphasis on psychological support could be expected from NHSE going forward. We'll have to wait and see.

Education
Education and providing tools to manage T1D, including CGM are key to success. Sounds obvious. But these are easy things to cut (or not invest in) in a hard-pressed healthcare system. Some of the speakers had no - or very little - education. What was also evident was the failure of both primary and secondary healthcare providers to always seize each opportunity to diagnose T1D and verify patients and or their family had received and understood basic T1D education. Both HCP and patient education would seem ripe for review, but the "system" (which encourages GP's not to refer) might be contributing to the overall failure?

Soon after his diagnosis, Jamie Reed identified that it appeared that outcome - in terms of T1D management - really is related to, amongst others, income, social standing, class and numeracy. He saw a clear advantage of knowledge,  something he is now able to pass on to his son, who also has T1D.

Funding
As I posted the other day, there's never enough money in any healthcare system to provide everything to everyone. Justin Webb (who did a superb job of chairing most of the day) reflected on his experiences of living in the US and thought that the Insurance based system - for all it's many faults, did provide (for those covered) greater and quicker access to healthcare technology.

Patient Choice and a move away from accepting one-size fits all collective responses to T1D (and other diseases and conditions) was something touched on by several speakers. It's unstoppable and will drive demand for greater access. The NHS has to figure out how to change in order to deal with this change in society without going bust.

It's all in a name
Language is important - Richard Lane would rather T1D was not described as a "condition." He felt it under-plays the seriousness of what lays ahead for each PWD and their families.

There was also several mini-debates as to whether Type 1 Diabetes was helpful (e.g. riding on the coattails of the investment - and healthcare burden - of Type 2 diabetes) or whether the risk of getting Type 1's voice swamped in the media and healthcare scrum was just too big. T1D represents less than ten percent of all patients living with diabetes in the UK.

Technology
Wes Ton's Nightscout presentation wiped the floor. Ok, so I'm biased. The #WeAreNotWaiting mantra so clearly drives this community, but also drives Wes and his family. I didn't take many notes during Wes' talk. Sure, I know the back story, I know more of the code than I would really like to (hell, I even wrote a few lines myself) but I didn't write because I was too busy listening. I think most of those around me were similarly transfixed - both his personal story that drove him and his wife to take action to improve so many aspects of  T1D care for their young son and the "Nightscout story" itself.

Wes Ton capturing the essence of #WeAreNotWaiting

And it's not just a story that starts and finishes with Nightscout and the original developers and founding families (and it is undoubtedly about more than "Developer Dads" - for a start not all the contributors are male; there have been kids driving this along since day one; there have been carers 'back-filling' during all those hours spent coding, documenting and even talking to the FDA - once again this has been a team effort). In my head, Nightscout represents more than a few thousand lines of code: it's about access to your data (now); it's about adding the analysis and features you want (not what makes most money or on some commercial timeline). It's more of a way of thinking and it resonates with the empowerment, knowledge and personalised care themes that echoed through the event.

The UK Nightscout Faculty did a superb job of fielding questions on the Nightscout stand during the meeting breaks. Nightscout was so popular I found myself answering questions on it in all corners of the exhibition room, even when I was away from the stand. Can you see which member of the UK Faculty failed to get anything to eat or drink during the lunch break?

Nightscout UK Faculty at your service

In case you thought core diabetes tech (e.g. your 0.5 or 1.0U injection pens or Glucagon kit) haven't changed much, INPUT had kindly lent Lis Warren a Palmer Injector, as she initially used to administer insulin. If we'd been presented with one of those to use on our little one on that first day of diagnosis, I'm not sure what words would have come out of my mouth...

Palmer Injector

But how does the NHS (or any Healthcare system) keep up with the pace of change of technology? Jamie Reed mentioned - rather sportingly - that politics was behind the curve: it just can't keep up with the pace of change in society. In another forum, I'd really like to explore how the Regulators and the Department of Health feel the healthcare system can adequately react to rapid change. It certainly can't at the moment. Could it even do that without compromising patient safety? And looping back to empowerment, whilst access to new techniques, kit and thinking can be empowering Anne Cooper also reflected that asking patients to change can bring other challenges and HCPs should not under-estimate those.

The End
In terms of its aim to inspire people with T1D (and those caring for those with T1D) to think differently, my impression was that TADtalk2016 delivered. As a one day meeting there wasn't time to dig into all of the points and themes that came up. If possible, I'd love to see TADtalk2017 take place over two days - Day 1 running pretty much as TADtalk2016, followed by an overnight break for thoughts to form (or disappear...) in the local pubs and restaurants then back for some structured Q+A and debate the next day, focusing, perhaps, on priorities of T1Ds and their carers and how to communicate these ideas across to healthcare, pharma and - most importantly - the whole T1D community. As one of Janki's favourite bedtime books ends: "First wish,  Then do. That's when wishing comes true"

As a community, we have the event organisers to thank:
Partha Kar, Portsmouth Hospitals NHS Trust
Catherine Peters, Great Ormond Street Hospital
Peter Hindmarsh, University College Hospital