Wednesday, 28 June 2017

Language Matters – Can You Help?

By Rosie Walker, Successful Diabetes and Anne Cooper, living with Type 1 diabetes since being diagnosed, aged 16, in 1979

We have both attended diabetes professional conferences and reflected on the language used about diabetes, for example, self-care is often labelled with words like ‘compliance’, patients are ‘suffering from diabetes’ and ‘poor’ is contrasted with ‘good’ control. These words carry a degree of stigma, or at the very least affect how people interacted with those of us who have diabetes. Rosie has also recently posted on her blog (see previous post below) including similar examples and more, showing that language really does make a difference

As mentioned previously, in other countries, most notably Australia, there has been a push to change the way language is used and Diabetes Australia have led the way in trying to eradicate words that are unhelpful when supporting people to live with diabetes and suggesting others. Their position statement ‘A new language for diabetes’ was drawn up by an eminent working group including clinicians, psychologists and of course, people living with diabetes. It is the basis for many events and presentations which quite literally ‘spread the word’ about language awareness and use in diabetes care. One such presentation was recently at the American Diabetes Association 2017 meeting in San Diego, where it was proposed that the USA might develop its own statement

Inspired by attending that workshop and/or hearing about it through Australian diabetes advocate and blogger, Renza Scibilia, ourselves and Dr Partha Kar, Associate National Clinical Director for Diabetes in England, have decided to do something about this in the UK; working with people with diabetes, and also professionals and voluntary sector organisations, to create a UK statement that raises awareness of and promotes the best use of language in relation to diabetes and people living with it

To start us off, we would like to hear your views

What words or phrases do you think should be discouraged from use in referring to people living with diabetes, the management of their condition and/or diabetes care generally? Perhaps you could give us a list of your ‘top 5’ recommendations with alternatives?

To help you get started here is the Australian position statement


Please post your comments in the comments box below or tweet your reply to @successdiabetes or @anniecoops using #Diabeteswords, by the end of July 2017. You can also email your thoughts privately to enquiries@successfuldiabetes.com

You can also comment on other people’s ideas if you wish (politely of course!)

We will be putting all the ideas together and will take all comments into account when drafting the statement

Please contribute and also share this invitation as widely as you can – we would like to get the views of as many people as possible!

Thank you!
Anne Cooper @anniecoops and Rosie Walker @successdiabetes

8 comments:

  1. I'm extremely pleased to see this article and the traction that is finally starting to get behind it. This is such an important issue and has significant impacts on outcomes of engagement and the mental health of those living with the condition. We are significantly behind the curve on this matter. I wrote in my own blog back in 2015 some suggestions I thought should be addressed, you can read it here https://t1ramblings.blogspot.co.uk/2015/03/the-dirty-language-used-in-diabetes.html and I was pleased to be pointed to the Australian Diabetes positional statement afterwards. Language really does matter, let's make a difference!

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  2. Thank you so much David. It looks like it's 'time to shine' for these ideas and reflections - finally, as you say! thanks for such a quick reply and for sharing too :)

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  3. Shelley Foster28 June 2017 at 18:04

    As for alternatives:
    Individual, good efforts, let's see if we can try something else, well done, don't be discouraged as there are other things to try, let's look for any patterns to see if any adjustments can be made, would you like some support to manage your diabetes? Manage is a better word than control!

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  4. thanks Shelley, that is fantastic (received your full message by email notification, so all noted) :)

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  5. Pet hate: "If you had looked after yourself when you were younger, you wouldn't have these complications". 50 years ago I had one injection per day, tested wee that had been in my bladder for hours, ate 6 carbohydrate laden meals a day. HBa1c had not been invented, BG meters had not been invented, basal bolus had not been invented. Looked after myself, well I did everything the medical profession told me to, so why is it helpful to make me feel it is all my fault because I have complications?

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    1. Thank you for this heartfelt comment. Totally agree that this is unhelpful to say. and especially as you did 'do what you were told'. What more could have been expected of you? You can't go back and change anything in any situation, what is happening now and for the future is the most helpful focus. Thank you again and wishing you well

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  6. Hate resppnse-No- when asking about possibilities rather than discussing what might be worth exploring.

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    1. Thank you Frances, agree that there are so many possible ways to deal and cope with what diabetes brings and discussing them is vital to find the right one for you. wishing you well and thanks again

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