I'm hoping to post something as a bit of a 'look back - look forward' in the next day or two, but wanted to give this long-delayed post about T1 Resources some room of its own.
T1resources.uk is a website that acts as a gateway to rated, reviewed and reliable online resources and peer support that can help people self manage their type 1 diabetes.
Some of you may already have stumbled across what I had been describing earlier in the year as 'Project Enormous' but for those that haven't it was an idea that grew out of a conversation that a few people had at 'Talk T1' an event that Partha Kar put together in Southampton in January last year to explore new models of care for type 1 diabetes.
The idea particularly resonated with me and it was something that I wanted to be part of because it was something that Dave Sowerby and I had discussed many times before. We have both been living with type 1 diabetes for many years (he since childhood, me since my early 20s) and we found each other during the early rapid growth of what gradually became #GBdoc. Without wanting to speak for Dave, I think it's fair to say that we both had a very positive experience of meeting other people online after years of relative isolation. The sharing of experiences, insight, suggestions, the understanding of the common struggles and frustrations, along with pitch black humour had a profound affect on me. Time and time again I would say, or hear someone else say, that they learned more online in 6 months than they had in the previous 10 years at clinics. Or that they *finally* felt they had people around them who understood what they were going through, based on lived experience rather than textbook theory.
But the question always remained - how could those positive effects be spread to a wider group? As a proportion of the 400,000 or so people living with type 1 in the UK, those connecting with each other online was clearly a miniscule fraction. And part of the nature of these blossoming interactive communities is that they can at once look impenetrably complex and full of well established groups and relationships. Finding a way in can look a bit daunting - even if you know there is something there to be found.
Add to this the complexity that some stuff on the internet is really useful, helpful and good, while other stuff is, not to put too fine a point on it, utter nonsense, and the challenge becomes greater. Particularly when you hear people expressing the wish that this stuff should be available on prescription, or at the very least be suggested to those newly diagnosed by their clinic or doctor.
But how could a doctor recommend something so intangible? What if the stuff people first happened upon was hopelessly inaccurate, dangerous or just dreadfully waffly. Perish the thought - someone might stumble upon these ramblings - surely all hope would be lost!
Wouldn't it be good if there was a place where you could find the 'good stuff'. And know that it had been checked by both doctors and 'real' people with T1.
And so, some of us living with type 1 diabetes who were connected to the diabetes online community, and some visionary healthcare professionals who could see the positive impact that peer support and social media interaction might have as part of a person's diabetes toolkit got together and made it.
What is T1resources.uk?
The site soft-launched in September and continues to grow and develop. It is great to see more people creating accounts and expressing opinions by rating and recommending resources. I had always hoped that there would be some community involvement as part of it. Best of all the reception among healthcare professionals has been amazing. I have been fortunate enough to be invited to speak at a couple of events during the year (more on those later) and whenever I have mentioned T1resources.uk it has been warmly welcomed with people asking for cards and details to pass on to people in their clinics.
I am hoping that the site continues to help people over the coming years.
Huge thanks to Sophie Harris, Pratik Choudhary, Kev Winchcombe, Laura (Ninjabetic) Cleverly and of course Partha Kar for their help and support and without whom this project could absolutely not have happened. Would be great to hear what you all think of it.