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

Mind your language – Oz Style!

Anyone who followed the recent debate about the actor Ricky Gervais’s use in tweets of the word ‘mong’ will be in no doubt that the terminology we use is under scrutiny everywhere, and people can be touched personally by terms even though they may have been given a new meaning by a new generation. It’s the same with diabetes – do you shudder at the word ‘diabetic’, shout aloud at the television when presenters talk about ‘non compliant patients’ or simply shrug your shoulders and say “they’re just words, get over it”?

Whatever your view, there are some strong feelings about language and diabetes. One in particular is that the language we use reflects the views we hold and these can slip over into how we treat people – for example in hospital, someone being referred to as ‘the diabetic in bed 5’, or in a clinic as ‘the patient’, suggests they are talking about objects rather than actual individuals. We once heard someone describe this experience in a clinic as “they might as well ask for the ‘next pancreas’ please”! 

Now Diabetes Australia have published ‘A new language for diabetes’, a position statement that aims to improve communications with and about people with diabetes. Its 10 summary recommendations include:

• Avoid jargon
• Avoid judgemental terms
• Be holistic – don’t just consider the medical aspects
• Focus on what’s achievable
• Use language that is positive and supportive, and forward rather than backward-looking

Pretty straightforward stuff you might think, but for anyone remaining in any doubt, the report also includes some helpful examples to show exactly what words and expressions could be used as alternatives to those which don't. For example:

instead of:                                    use this:

diabetic/sufferer/patient         person living with diabetes

diabetes control                           diabetes management

failed to / failure                           has not, did not

blood testing                            self monitoring or checking

There’s nothing not to like about this document – with the possible exception of the sadness that it needs to exist at all. It seems such a shame that people need to be reminded of the very personal nature of diabetes and the efforts that people make day in day out to keep on top of a condition that most definitely does not keep to the ‘rules’ - as a lady with type 2 diabetes once put it to a health professional “I’m afraid my body hasn’t read your text book!”

We welcome this statement with open arms, particularly as it is so consistent with our own philosophy of personal, individual care and attention, which we apply to all our own writing and publications.

Our Australian colleagues have given an example to all other countries and we hope many others will adopt this idea. Diabetes Australia - in the plainest possible language - thank you!

The full statement is available to download FREE from the ‘SD Focus’ section of our website home page. For your copy, simply go to www.successfuldiabetes.com and log in or register and log in.

Reference

Diabetes Australia. A new language for diabetes: improving communications with and about people with diabetes.

How much does the language people use in relation to diabetes matter to you? We'd love to know, so feel free to share your thoughts in the discussion below…