I have drawn on my own life experience of living with diabetes, being a Foundation Trust Patient Governor and my working life in citizenship and digital health to identify 10 ways we could improve how we create the conditions for people with diabetes to gain the confidence, skills, knowledge and connections to better self manage and live well.
1. Provide accessible information directly to people with diabeties not copied in, not jargon and in context.
The letter in the picture below made me cry when I received it. I was copied into the letter about me addressed directly to the GP. There was a set of results with no information about what they meant or whether they were in the normal range – I checked and some of them were not. It was also the first I knew that I had non background diabetes retinopathy and maculopathy. 2. Understand each person as a whole person not simply a condition, a ‘diabetic’, as @anniecoops says in her excellent blog post #labelsareforjamjars (there are lots of other insightful posts from Anne on her blog ‘The thoughts of a nurse with type 1 diabetes’)
3. Be purposeful and thoughtful with language and narrative. It does matter. The deficit model and language (and intent) that puts systems before people can impact on self esteem, confidence and engagement and subsequently health outcomes. The phrase often used which makes me flinch is ‘the burden of diabetes on the NHS’.
4. Provide accessible education for all. This means lifting barriers such as language, place, time, using digital and offline and working with people who live with diabetes to champion and deliver! Being diagnosed with diabetes and just left to get on with it is like being given the keys to a car and told to drive it with no previous experience, handbook or lessons.
5. Do not promote self management and ’empowerment’ then have a standard policy of locking away insulin when a person with diabetes becomes an inpatient for whatever reason.
6. Understand the emotional and mental health aspect of living with diabetes. It has a huge impact on the ability to self manage and live well and is largely ignored. In 18 years I have never been asked about or helped with this part of my condition. This book written by @drjennash on ‘Diabetes and Well-being’ should be handed out as part of the diabetes induction.
7. Unleash the power of offline and online peer support and community in living with this complex 24 hours a day condition. Check out tweetchat #ourd Tuesday’s 8pm!
8. Work together with people and organisations to understand and tackle the social and wider determinants of wellbeing, look beyond the medical model of health.
9. Kindness, compassion, empathy goes a long way. See this super Brene Brown RSA clip on Empathy
10. Please engage us in all our diverse forms at every level, move from paternalism to coproduction in individual consultations, service and product development, commissioning and strategy. To find out more about what this means watch ‘no more throw away people based on @EdgarCahn classic book of the same title and read this fabulous coproduction article by @allyc375