I spoke briefly at yesterday’s Healthy Kidneys, Healthy Lives event at the Reebok Stadium in support of Cristina Vasilica’s excellent work in developing and promoting GMKIN. This is what I had to say…
“Good day everybody, it’s a pleasure to see such a well attended and supported event.
Cristina has asked me to talk about the benefits of using technology and the Greater Manchester Kidney Information Network, GMKIN for short, but I’ll begin with what I feel is the most important part of this project.
I want to take you back to when you were first diagnosed with Chronic Kidney Disease. If you’re like me you may have been overwhelmed at the prospect of heading down a dark and daunting road into the unknown; I would have welcomed some help and guidance in those early days and I still feel the need for that help and guidance over 20 years later. That’s where you and GMKIN can help. Over the time we have lived with our various kidney conditions we have have all gained invaluable knowledge and understanding of that dark and daunting road and I feel the information and experience we have gained can act as a street light on that road if we’re prepared to share it.
That’s where the technology comes in. The various elements of GMKIN, the website, Facebook Group and Twitter account give us an opportunity to share information and experiences that can potentially help other sufferers and their carers as they too set off on this difficult journey.
Many people here today will already have the equipment necessary to connect to the Internet to access the services that constitute GMKIN. To those of you that haven’t, there is equipment, help and support available so that you too can take part. If you feel that you don’t understand the technology, guess what? You don’t need to! Try to consider the technology, the website and Facebook Group as though it were the Royal Mail. When we write a letter and post it we don’t need to understand how the letter gets collected, sorted, distributed and delivered. What matters is what’s written in the letter. The same is true of GMKIN, no matter what you say, no matter how you say it.
So what have I got out of GMKIN? Without GMKIN I wouldn’t have discovered that there is hope that my son may not have to dialyse, without GMKIN I wouldn’t have been able to witness the enormous advances in research into Autosomal Dominant Polycystic Kidney Disease or the vast improvement in transplant work up and transplant options. With GMKIN I can offer my experience and support to others and it is that that benefits me most of all.
I believe that by using GMKIN we have an opportunity, through the use of technology, to create something that will not only improve our own understanding of Chronic Kidney Diseases but will also create a model of patient-centred care and support for the future. I also firmly believe that it will help you. Please sign up for GMKIN and thanks for listening.”