I've been out of the loop in the last year when it comes to new projects on the diabetes horizon - mainly because there is a socially acceptable level of housework which has to be met in order for your home to be considered habitable; a level which has long been the stuff of legend in our home since the whirlwind arrived. But last week I had the opportunity to take part in a focus group about a new way or working with Healthcare Professionals (HCPs) when it comes to verbalising what is important to us in managing our diabetes at any given time, whenever we visit the clinic. That new way of working is called Kaleidoscope.
Kaleidoscope is the brainchild of Chartered Health Psychologist Dr Kath Barnard, who recognises that at any one time there can be a multitude of factors affecting how well we are managing our diabetes on any given day. Those factors (for example, the level of support we have at home, our access to the appropriate technologies, our knowledge of diabetes, or how burnt our we are), are fluid. They change constantly and our needs change based on how well each aspect of our lives is working with all the others. And just like a kaleidoscope, if you stopped your life in the middle of the daily whir, the resulting patterns would look wildly different and complex each andevery time. But trying to communicate what is most important to us in the 15 minutes we have to meet with our diabetes team can be difficult. And if, like me, visits sometimes happen when I am in the depths of burnout and barely even registering my diabetes, those clinic visits can sometimes involve a very satisfying - but not overly productive - 15 minute rant about diabetes and the general bastard that it can be.
The idea behind Kaleidoscope is that a short online (mobile friendly) questionnaire (six minutes to complete in my case) can help identify the top 3 priorities for you at that time. The questions broadly cover a number of key areas such as environmental, physical and psychological factors and how you are feeling about various aspects of your care/management. The end result is your top three priorities listed for your next clinic visit. This gives a voice to those struggling to find their own, or to those who find it difficult to steer a conversation - or even recognise - what is most important to them.
I had the opportunity during the focus group to try the model, and completed it true to what is flipping around my brain about diabetes right now. I imagined that my clinic visit was tomorrow, and that this would be what I aim to cover.
"Great," I thought. "But I know what my priorities are. I don't think I need to know them before I go in. This is probably more for people who struggle to communicate their own needs. Mine will obviously all be about burnout."
Oh, the arrogance.
After six short minutes, there they were. My top three priorities, of which only one related to the psychological aspects of living with diabetes. It took me a while to work out where the others - knowledge of managing diabetes and another I can't now recall - came into play. But as I sat and mulled it over, it all made sense. Since my diagnosis of autoimmune thyroid disease, my feelings towards managing such frustrating conditions have been all over the show. I have spent hours Googling Graves' Disease, energy levels and diets for thyroid function, feeling helpless, hopeless and hapless at best. I have tried diets, pills and supplements which have all played a role in changing various aspects of my usual diabetes management - something which played second fiddle to my (stupid) new condition. The ups and downs of trying to solve one problem have left me feeling clueless about the one I thought I had a handle on.
Kaleidoscope helped me unmash the muddled-up soup of thoughts in my head and replace it with three places to start a conversation; one which may help me refocus my thoughts and efforts on the most important thing - my health.
It turns out that even after 30 years, there is still something you can learn.
