I’m a firm believer that the best way to improve the quality of living for diabetics is for us to get involved ourselves. I strongly advise getting in touch with your Diabetes Patient Organisation (e.g. Diabetes UK, JDRF, American Diabetes Association) and see what’s going on. Not only will you probably learn about the advances going on in diabetes care, but you’ll also meet other diabetics and people affected by diabetes.
That doesn’t necessarily sound like a big deal – I used to think “what do I have in common with other diabetics apart from a dodgy pancreas?” But actually having to manage glucose means you will share lots of life experiences, and can make friends really quickly. On top of that, you will get to understand how other people handle their diabetes and can possibly improve your own control. I am or have been part of:
Long-term conditions, Young people, Networked Communications Study (LYNCS)
I have been involved with Prof. Jackie Sturt and Dr. Frances Griffiths to help develop and oversee the LYNC Study at Warwick Medical School and KCL. This NIHR-funded project looks at the use of digital communications in the treatment of long-term conditions, explores the benefits and negatives of using such technology to connect patients and healthcare professionals, and considers the implications of these media to the future of healthcare in the UK. In doing so we’ve set up a Facebook group and page, started the Twitter handle @LYNCStudy, and tried to promote #DCC (Digital Clinical Communications) to engage with how young people use this technology already.
It’s a really exciting project and I’ve been given a good amount of responsibility, from editing posters to amending questionnaires to chairing the Project Management Meetings! It’s fascinating to see how research happens ‘in the flesh’, and how its findings become policy at a national level.
Diabetes UK - Young Leaders Action Group
This group was sponsored by Tesco and made up of people aged 16 – 30 from across the UK to help set up services aimed at improving young diabetics’ quality of living. Young people’s needs are often overlooked in diabetes care, and we helped to make a difference by producing handy, accessible fact sheets on hypos as well as working with Diabetes UK Scotland to make Just DUK 1T , a website designed for young diabetics.
It was a great project, full of interesting and inspiring people using their diabetes to improve other peoples’ lives. Check out the project and its results here.
IDF Europe Young Leaders in Diabetes
In the summer of 2013 I took part in a week-long trip to Italy to meet other young diabetics from across the world (from as far east as Kazakhstan!) thanks to IDF Europe. It was a really great experience, making friends and connections as well as learning about the charity’s work in the EU Parliament. It was also very humbling to realise quite how lucky we are in Western Europe, and the UK in particular, to have healthcare systems that actually work, no matter how poor you are.
See here where IDF Europe could take you.
It’s a good idea for diabetics to take an interest in the science behind their treatment. After all, if doctors and diabetics are meant to work hand-in-hand to achieve good glucose results, why shouldn’t that extend to research as well? Clinical practice has to get its ideas from somewhere and in my opinion diabetics should help set that agenda too.
Practical, lived experience and academic research are great companions: one grounds the study, keeping it relevant, and the other becomes informed, educated and empowered. Both are improved by working together.
Along with the LYNC Study here are some other scientific research projects I've been involved with since beginning Joe’s Diabetes:
The SWEET Project
Getting Sorted was commissioned by NHS Diabetes (now part of NHS Improving Quality) and led by Leeds Metropolitan University. It used the views of young people with Type One diabetes to develop and deliver a new self-care programme. A truly ‘by us, for us’ initiative, it challenged doctors to look at diabetes from the young people’s perspective and consider it as just another part of their lives.
Symbiosis was funded by the Engineering and Physical Sciences Research Council and looked at physical activity and diabetes. In particular, it looked at developing an alarm to warn people who no longer had good sensation in their feet if a blister was starting to form. This had the potential to greatly reduce the 17,000 amputations that happen every year in the UK.