Apologies for a longer than usual My Week but I hope you'll bear with me as I explore an issue dear to my heart.
I have just spent the weekend with my sister, husband and my two nephews. Both my brother-in-law and youngest nephew (he's just 10) have type 1 diabetes. Watching them all together has been a sobering lesson in how little, as healthcare professionals, we see of the work families do when living with a long-term condition. We can give them different names (chronic illness, chronic health needs, long-term conditions) BUT a different name does not change the impact that they have on people's lives. Little that you take for granted in life is left untouched particularly when you are young and still discovering the world and who you are. Being singled out as different from your peer groups must be so difficult and not being able to eat the chocolate fudge cake you fancy must be awful.
When I was a diabetes specialist nurse I used to spend time with families just listening to them talk about how they felt about the intrusion in their life the whole thing was, from the injections, blood tests, the mental arithmetic needed to calculate insulin doses, explaining to countless swimming pool lifeguards, friends, parents of friends, shopkeepers etc about the intricacies of diabetes management. I used to have to defend my reasons for home visits and the time spent listening, but looking back I now realise that I was lucky to be able to do it. I am not so sure that I would be allowed the luxury of that autonomy in the 21st century target-driven health service.
As a nurse in diabetes I was always convinced that I was an ear to be moaned into and a shoulder to cry on, not a technician there to instruct people about injection technique and blood glucose monitoring. One of the reasons I left clinical practice was that the chasm between what I wanted to do and what I was able to do was becoming wider and deeper and that I couldn't live with the dissonance in my practice. This weekend has got me thinking about a lot of things.
One of these is about my research I undertook and my quest to understand the role I might have had as a diabetes specialist nurse. I interviewed six people with diabetes over 18 months and listened to their accounts of their lives with diabetes and the impact healthcare professionals had on their experiences. I never wrote the research up as I encountered an insurmountable hurdle writing up the thesis, but the overarching theme that emerged from the research was that of "transitions". Just as people had sorted themselves out with diabetes and learnt how to get along with things they would go to the clinic and everything would be back to the beginning. One person likened it to the game of Snakes and Ladders with mostly snakes that took you a few steps back rather than the ladders that could lift you onwards.
My challenge now is to explore how we communicate that to the policy makers in healthcare and those who look at outcomes rather than process. Debbie Kralik and her team in Australia have begun to really develop the concept of transitions in the delivery of long-term conditions and I am pretty certain we could learn a lot from the work she is doing "down under".(1)
This weekend's experience has convinced me to take these issues forward and see if I can get to the conference in Australia next year and present my thoughts about poetry.(2) Often you need a sideways look to see what is in front of you and poetry does that – takes a slant on life, bemuses and confuses and then you see clearly. It's a funny old world and it's odd what you learn about when you reflect on your experiences. Maybe I have just found a way of bringing together my research from the past and my current endeavours. All I have to do is submit that abstract!!
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