Ninjabetic – The language of diabetes
At this year’s Diabetes UK Professional Conference I had the pleasure of presenting with a fellow patient advocate, and amazing leader in diabetes youth work, Dani Cochrane. Dani and I were honoured to be delivering the first ever patient-led workshop in the history of the conference (so we were told by the lovely Simon O’Neil), but that also bought a lot of pressure!
Would people turn up? We were in competition against Partha Kar after all. Would people listen? Would we be able to answer their questions? Would the workshop be a complete disaster ending with us drowning our sorrows later in the pub and sobbing uncontrollably into our insulin pumps?
It seemed these worries were unnecessary as the workshop, ‘The Language of Diabetes’, was a great success and positive feedback came flooding in from healthcare professionals across the UK and as far as Australia! It would appear that mine and Dani’s combined 28 years’ experience of living with type 1 diabetes paid off and we were able to provide a valuable insight that is difficult to teach from a book or a lecture.
Our workshop was important to us not only as patients, but also as healthcare professionals ourselves. Dani and I are fortunate enough to be able to see the world of diabetes from both sides of the table and we wanted to get that across in the hour we had. We were not there to judge the audience, just as we would not expect any healthcare professional to judge a patient. This was a key message that we wanted to deliver, mutual respect between patients and professionals is so very important.
Those words and that encouragement could have been the deal breaker in capturing my attention from day one and would have shown me just what is possible when it comes to living with diabetes.
Kicking off the workshop we were joined by a clinical psychologist and a dietician who, through the use of role play, showed the audience just how confusing conversations around HbA1c can be. Although I laughed along at the utterly confusing, jargon-laced conversation between the two, my personal experience of having this conversation bought home how difficult it can be.
It reminded me of how often I would go away from an appointment with a result and really not understand the meaning of it or the implications that it would have for me. It reminded me of how I felt like an underachiever, along with the feeling of incompetence for not quite being up to the level of knowledge around these conversations that seemed to be expected of me. Writing this, the very words that I have used to explain how I felt back then are the very words that I want to remove myself from. These are negative words associated with negative feelings and no patient, parent or carer should come away with an HbA1c result, or from the conversation about it, feeling negative.
Next up I spoke about my first ever ‘make or break’ experience in secondary care when a discussion around diabetes-related complications arose. I say make or break because that conversation was a big factor in causing me to rebel against my diabetes for a long time, sadly the consequence of which was that complications did catch up with me. However, being older and slightly wiser, I am now able to reflect back on that important day which I remember so well, and pass on my thoughts and ideas about how things could have been for me had the conversation gone differently.
I knew that I did not want to hear the words “amputations”, “blindness”, “kidney failure” etc, but what would have gotten me off to the start in my diabetes life that I needed were “you can do this”, “you are stronger than you know”, “diabetes will not stop you” and “we are here to support you”. Those words and that encouragement could have been the deal breaker in capturing my attention from day one and would have shown me just what is possible when it comes to living with diabetes.
Last, but by certainly no means least, was the star of the show, Dani, who facilitated a fantastic interactive group workshop in which she demonstrated that what people may see when they look at a patient, isn’t always what it seems. Dani and the audience talked about the importance of not making assumptions about a person, or how they are feeling, without getting to know and understand that person first.
Building a relationship between patients and healthcare professionals is incredibly important when it comes to long-term conditions and both sides in the room demonstrated that taking a non-judgemental approach to a conversation is what matters most to them. By both sides basing a conversation on fact, rather than assumption, it gives the opportunity for an honest and open conversation to develop and to take them forward, rather than causing a barrier to form.
It was a fantastic discussion to have and I was incredibly pleased with the way the audience opened up to us and to each other about the barriers that they come across, as well as sharing their experiences and tips in improving communication and language used in consultations.
A great positive that myself and Dani took away is the opportunity to now take this workshop further and to develop a national mission statement about how language can be used positively to improve consultations between healthcare professionals and people with diabetes! I would like to thank Diabetes UK for giving us the opportunity to deliver this workshop and a huge thanks goes to my partner in crime, Dani, who I had the pleasure of being joined at the pancreas with throughout the conference!