Creating new T1 Diabetes models of care

The weekend just gone was very special for me and one that I will remember as the first time that I have ever felt truly positive about change in Type 1 Diabetes care. 

I was invited to attend an inaugural meeting in which patients with T1D, carers, Health Care Professionals (HCPs) and commissioners would come together to develop ideas to improve the care that patients receive throughout the UK. It was an honour to be asked and to be amongst some of the best in the world of diabetes... (cont) 




The group included many people that I had met before through my diabetes work and I can honestly say that if anyone was going to make waves in T1D care, it was this group.

First up we had patient and parent presentations to set the scene regarding what we needed to change, move away from, embrace, improve and continue developing further. Kev did a excellent job of talking to us about being a “diabetes dad” and describing his daughter Amy’s time with T1. He articulately discussed his experience as a parent, the tools that himself and Amy use to successfully manage her T1 and what they had and hadn't benefited from in terms of the care Amy has received. Before this talk I hadn't heard Kev present before but he did so in a way that captured the audience and made us all think about how some aspects of children’s and young people’s care need to improve.

Next up was little old me, and I won’t talk too much about my journey as so many of you know it inside out, but what I really wanted to get across to the room were two key points; that change is happening in health care with regards to digital and online education and support, and HCPs need to embrace that change. Also, in terms of education (which was my main focus), it is lacking in many areas and it is so very important that from day 1 of diagnosis we take away some education. Reflecting back on my experience, I was on a dose of 100 units of insulin per day, from the age of 16-25. For these 9 years I was told to take 20 units of fast acting insulin for every meal I had, no matter what that meal was, and 40 units of long acting insulin at night. I knew nothing of carb counting, correction doses or even how dangerous insulin could be. Is it any wonder that I stopped taking my insulin because of the crashing hypos I was experiencing from those doses.

We then heard from Jens who described the lack of transparency in his care and the complicated system that he found himself up against. It was very interesting to listen to someone who had challenged the system and the people in it and to hear that there was very little interest in making improvements. Jens, if you didn’t know, if the founder of Diabetes Care Finder, which (when it’s up and running) will allow people to find the diabetes care that they need, read patient reviews, review the services that they attend and ultimately make decisions that are best for them about where their care is delivered. Jens is a real innovator and Diabetes Care Finder could be a big game changer for patients with diabetes. 

And last but certainly not least we saw Mike inflate a balloon and make a rude noise with it! True story! Mike wowed me with his experience of working as a lay member to create the NICE T1 Diabetes Guidelines. I was impressed to learn that the process involves a monthly meeting for 5 years - now that takes some real dedication. Developing NICE guidelines is something that I don’t have much knowledge on so it was interesting to hear Mike educate the room as to just what goes in to creating these guidelines and why he decided to do this. In the past I will admit that I have been too quick to judge based on what I see in front of me but I must say, I don’t think I could have done what Mike has. When we, as patients, all have such individual needs it must be an incredibly difficult task to undertake, so I have a lot of respect to Mike for stepping up to the challenge!

So as far as patients and carers go, we had a really insightful session which would guide the HCPs later in the day with regards to developing ideas for new models of care.

After a quick break we heard from the legends, Professor SimonHeller and Dr Fiona Campbell who gave an overview of how diabetes care has developed over the years, but recognising that it isn’t where it should be. They highlighted that it isn’t as advanced in capturing technology in the way that it should and that the reality is that we don't just need to keep up but we need to stay ahead. Prof Heller asked the question “Which condition demands more of an individual that Type 1 Diabetes?” There was silence in the room as we all knew just how much input is needed from patients and carers to manage T1D on a daily basis.

Up next was what Partha described as “the fun bit”. And it was fun indeed! The HCPs split into 4 groups, each with a scenario (including a pot of gold) and were asked to develop a possible model of care which was then pitched to a panel of commissioners and a patient representative (Roz Davies). The groups were allowed to select patients to join their groups in order to probe us further about the care that we receive and any suggestions we had for improvements. Ideas developed, I sat back and listened as the HCPs challenged each other and forced each other to think outside the box. I was impressed at their passion drive and determination. I could see genuine excitement in their eyes as within around 45 minutes their ideas were looking promising. As I said before, this was an incredible group of people and it was reassuring to know that we have these people fighting our corner in the world of Type 1 Diabetes. I just wish everyone could have been there to hear what was said throughout the day.

One of the main points that I have taken away from the meeting, which seems incredibly obvious now, is that I tend to live in my own little bubble in which insulin pumps, CGM and access to specialists as and when I need them are the norm for me. The meeting reminded me that there are many more people with different needs; those who choose not to use pumps and CGM and those who aren’t able to; those who receive very little support and education and for whom access is hard to come by; people in nursing homes or those who are house bound or those who are in prison or are homeless... This is why we need options for patients and more than we have at the moment. If a patient would prefer to be seen within the community then can we make that happen for them? Should they have to see a specialist? If someone needs to be seen in secondary care how can we ensure they are seen within an appropriate time frame? What needs to change to make hat happen? If patients would like to have all of their 15 health care essential checks delivered in one place then what can we do to provide that? The fact is that we need flexibility in what patients are offered, we need choice and most importantly we need services that people are going to use and get good outcomes from.

I won’t go into details about the final proposals but I must say that they were all very promising. Please keep watching Partha’s blog for more details as he has promised to do a write up for you all but trust me when I say they were creative, forward thinking, innovative and patient centered. I have been to a lot of meetings which have promised to improve T1D care and not one of them has followed up with their plans. Not one has made the effort to cover so many aspects of the patient journey in order to influence change. A quote from Dr Pratik Choudhary (which I have pinched from Roz’s blog – sorry Roz) is something to think about… "Current practice kills at least 30% more people by the age of 50 than best practice should achieve."

It’s time to do better.

Ninjabetic

You can catch up on the weekends tweets by searching #TalkT1 on twitter and on my storify archive here.