By Rosie Walker, Successful Diabetes and Anne.

DiabetesWe 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 interact with those of us who have diabetes.   I have also blogged previously about the use of labels and stigma (check out #LabelsR4JamJars).

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 (if you would like to remain anonymous please say so in your comment and I will not post it openly on this site but will add your views to the debate).  You can also tweet us @anniecoops @successdiabetes using #Diabeteswords or #languagematters, by the end of July 2017.

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

time to listenWe will be putting all the ideas together and will take all comments into account when drafting the statement.  The statement will be developed by a multi-disciplinary group but your voices can be heard.

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!

We will also be having a tweet chat on July 25th in the evening with @WeNurses using #WeMDT.  That should be a lively event so please put a place-holder in your diary!

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

anniecoops diabetes

41 thoughts on “#LanguageMatters

  1. Diabetic
    Also the astonished health professional asking ‘is your child not controlled yet’
    Or the puzzled optician who asked why he went high sometimes when he has a pump.
    Stamp out ignorance!!

  2. Diabetic should be banned, my son hates it, he says he has Tyep 1 diabetes. He is a person not a condition. He also doesn’t like being asked if he is well controlled- I told him to reply with ‘ no I scream & shout and pee on the floor’.

  3. There are not to many words that i dislike but there are some. My son has Type 1 Diabetes, he a young teen. If i mention it to someone I never say he’s diabetic simply because I think people need to know the differences….so if i’m going to mention it I say, J has Type 1 Diabetes…just like i would say J has brown hair. Keep it factual and concise. Equally I never use the word suffer this is very much personal choice nor do i describe it as an illness, i describe it as a health condition. Because using the words suffer and illness make him look sick and actually he’s a very healthy boy he just happens to have an organ that doens’t function as it should. Though I know with hypos he only feels a bit uncomfortable if he feels them at all and he’s not aware of being high at all, so actually it never makes him feel ill. It’s just a grind and an annoyance to him. Compliance i’m not keen on either. That’s just us. Everyone is different. Good luck with getting the terminology reviewed. I think most parents are keen to get across the difference in types so never just use the word diabetes, unless we are talking to another person who is living with the condition. Please do ensure as you go for the change that you do consult with as many people living with Type 1 as you can before you agree on the changes. Don’t know if you are aware of the Families with Diabetes National Network, it’s a group of Parent Representatives from around the UK that represent each region, they may be able to help and give you wide reach of opinion. Good luck.

  4. I think the previous contributor ‘Admin’ has read my thoughts! Illness, suffer, battle, fight are all banned as far as I’m concerned.
    I’ve been trying to think of acceptable alternatives for some words. Instead of non-compliant perhaps ‘disengaged’ or even ‘in need of support’. I ‘live with’ type 1 diabetes and ‘manage’ it. I can’t control it any more than I can control an itch. All of these terms are borrowed from other PWD who have given this greater thought in the past.

  5. The Australian guidelines are good. As a parent to a child with Type 1, I would add “independent” – mostly from schools but also from clinicians. I’m not sure what the alternate wording is but it feels like a loaded term. My son and I both hate being asking “does he have good control” by medical professionals. I always answer that we work hard to manage his type one and his hba1c within the range that’s appropriate for his age. What a mouthful! Also the importance of #hellomynameis cannot be underestimated. Horrible to have to go through a clinic session not knowing the name of the person you are speaking to. Our clinic have now moved to booking you with a named clinician through the booking letter which helps.

  6. Grew up with diabetic and don’t mind it. Prefer it to PWD. Feel like I define myself not words or my condition. So if ‘diabetic’ prompts a conversation that’s great. I agree that many words seem judgemental. Non-compliance one of the worst. HCPs still use but I feel are getting better. It is our job to challenge them on terminology and to ask what they mean. Control? We are never really in control of this condition. But any guidance and tweaks and advice from HCPs and others welcome in any language I can understand and not feel disengaged with helps.

  7. Hate the word ‘independent ‘, they need to be independent and this quite often used to young children/teens who lets face it have much more fun things to do. Opticians/dentists/GPs who ask if they have good control. Been told by an inclusion person that my 11 yr old being independent on a residential was good practice for university.

    Hate suffer too, ‘lives with’ is better and my child has type 1 and is not a diabetic, would you introduce another child as a myopic…doubt it very much.

    The non compliant is awful and does not reflect the fact that every one is doing their best, maybe not the same best as someone else, or even their best ‘best’ but just the best they can at that moment. Life is way more than type 1 and it isn’t always given top priority life gets in the way.

    Love the Australian guidelines and would love there to be something similar in the uk.

  8. “Compliance” is a word used by those without T1 (or 6 C’s) & “control” implies that it’s actually achievable- so many factors influence BG

    Am a Nurse & #mySonhasType1 I can’t bear “diabetic” – I would never have labelled pts before his diagnosis & if does not define him

    Ps- thanks for making a difference- can’t wait for @WeNurses chat on 25th July 💙 also so nice to feel alone living with T1 & nursing

  9. #LanguageMatters | fionacarey2000

  10. Hey,

    I have to say my HCP are amazing with their attitude and language at Homerton. In 10 years I’ve never had 1 annoying thing uttered by them. I understand that this is rare, and I am very lucky to have such a great team on my side.

    And that’s prt of it that needs to be taken into account. My Diabetes is the responsibility of myself, family, GP, pharmacy, optician, Hospital together to look after. It’s a team game, and everyone needs to play their part, understand their role, and be respectful in all directions. Language, and attitude can be key to this.

    It’s about building relationships as people, but just judging numbers. I’m not a number, I’m a complex person with relationships, dependants, stress, emotions which affect my ability to deal with my diabetes. It’s not a priority 24/7, 365.

  11. Sorry, ran out of signal on the tube… so it’s words like this that really grate:
    Suffer – I live with diabetes
    Patient – i am a person
    Control – manage
    Fight/ Battle – it’s a struggle, but I’m not armed and dangerous
    Good/bad – my day is great, but let’s. Or judge my BG levels
    Target – something I can miss completely
    Compliant – I am not subservient, I’m engaged, proactive, taking ownership as part of the team.

    Hope that helps x

  12. Thank you for this initiative. It is a great idea. Getting asked if my daughter is well controlled is one of my main bug bears. I never know how best to answer as we are working really hard but still get out of range numbers.

  13. Hypo is a real problem in communication. You need to specify exactly how you are feeling (slightly low……to extremely low and unable to think clearly; here we need to develop some agreed descriptions) as well as detailing your actual blood glucose level. Without those two pieces of information the word is not helpful. Indeed I never use it for those reasons.

    The DVLA in reality use hypo to mean when you had required help from another person.

    From our research I can show people who have reset their blood glucose levels as low as 3.5 mmole/l and are happy at that level (even though it means they cannot drive) and others who feel low at 10 mmole/l.

    The body can reset what it regards to be its normal blood glucose level. It took me 4 weeks before I could live at the normal 4.5 mmole/l and this is why current training courses fail. The recent RCT on DAFNE showed a success rate of a mere 4% in achieving a HbA1c of 6.5%.

    It is all detailed in my paper published by the Parliamentary Accounts Committee and used in its 2016 critical report on diabetes. A confirmation of this is in a further paper published with the local consultant who sends his patients to the nurse led team in Cheshire who achieve 65% compared to the poor 4% as above [they achieve 85% success at HbA1c of <7.5%]. They take 8 weeks to slowly reduce blood glucose and spend about 1 hour a week teaching patients on a one to one basis.

    Peter J Donnelly

  14. Annie,
    I really like this. The detail of specific phrases or terms can always be debated. However the principle of moving language generally in the direction of less offense and prohection of judgement is an important step towards empowering the person living with diabetes and the HCP.

    Help simple aspects of behaviour and they can become habitual and therefore become character.The table of phrases could be very useful. Maybe will summarise and use as a tool during team sessions or network day. Thanks

  15. Thank you Neil. It’s great to hear your views and your post has made me think carefully about how we cite the purpose of the document. It’s not to beat anyone up. It’s to help people think purposefully about the language we use so we can provide the best support in partnership with people who have to manage Diabetes. I hope we can get the positioning right! Keep helping us. Will try to make what we do as open as possible so people can advise as much as possible. A x

  16. Language stems from thought. I think it is much more important to question people’s attitudes and behaviour than the precise words that they use. A healthcare worker who listens and responds to their ‘patient’s’ needs will communicate this whatever words they use. ‘What can I do for you? How can I help your life be as “normal” as possible?’ What we should be campaigning for is a better understanding of type 1 diabetes, both for all healthcare profeessionals and for those with the condition. Start from where the ‘patient’ is and don’t judge them. And be curious – it amazes me how so many diabetes specialists have no interest in how it works, how little it is understood, how it differs from person to person – they just want to colour by numbers, but not to learn.

  17. Me and my family are a linguistic mine field. I have epilepsy and diabetes, my son was born without a left eye and my daughter has diabetes. Where do I start? Suffer should never be used to describe anyone’s health. Diabetes isn’t ever controlled, it’s managed and it’s exhausting. Not bothered about being called diabetic or explaining type. Diabetes doesn’t come in different flavours, good type, bad type. My sons left eye shouldn’t be described as fake, bad or poorly, nor his right good. No staring. And please don’t mention fits, epis, etc around me. I’m not epileptic.

    Specifically regards diabetes and healthcare professionals. Ask me how I feel, talk to me about numbers but don’t treat me as numbers and use language that doesn’t judge me, make me feel a failure, or isolate me.

  18. I would language to focus on partnership in the management of my diabetes – so using the word ‘we’ instead of ‘you’. It gives the feeling of support and less isolation. Language needs to be solution focused rather than problem based. For example: We can improve your Ha1bc by …. or How can we improve your daily struggle with ….? Avoiding the ‘should’ statements which for me are loaded with the idea of failure!

  19. Hi Annie, thank you so much for this initiative ; I completely agree. I think language reflects and reinforces attitudes.
    I can’t bear being asked whether my diabetes control is good – generally by HCPs who don’t specialise in diabetes. GMS!!
    I am intolerant of, but polite about, being called ‘a diabetic’ and completely agree with the mum above who mentioned ‘a myopic’.
    I think the language and attitudes of other people/HCPs during my childhood with Type 1 in the 60’s led to quite a lot of resentment, fear, and isolation.
    Very interesting to read the comments about about low BGs; I’ll say I feel hypo. It’d be good if there was a way to say it that explained it or gave some space, as well; it’s so hard to answer questions when brain functioning on empty! I can recall a GP in a social setting asking me all about it when my BG was 2!
    Use of the word complications needs sorting out! I’ve started to say ‘risks’. Complications has such a negativity, and also seems inevitable.
    I think with diabetes we have to spend such a long time explaining!
    Something that reflects attitudes and assumptions is as I get older I find people assume I have type 2 which is disconcerting; I was given the wrong advice by the nurse in charge (which was to stop my insulin as I’d been having hypos) when I was admitted by my GP when I had a shocking chest infection.
    I completely agree with earlier comments about use of:
    – suffers with
    – suffers from
    – patient/s
    – control
    – poor control
    – compliance

  20. 1. Compliance/non-complient. Places all the blame on the pt rather than fact treatment may be unworkable/unacceptable.
    2. Being called “a diabetic”. It’s an adjective not a verb. Prefer person with diabetes/living with diabetes/has diabetes etc.
    3. BG test. Tests are either passed or failed. Prefer “check” as this just lets you know where you are so can see if you need to do anything.
    4. Judgement. State facts & go from there. Not using good or bad – e.g. numbers are either above, below or in range. They shouldn’t be a judgement.
    5. Threats. Listing complications makes them seem inevitable rather than let me know there’s a risk of xxxxx but this is what we can do to reduce those risks. Also complications should never be used as a threat to try & motivate someone. Probably have the opposite effect. Using poitive language is so much more moivational. Acknowledge all the things that are done every day rather than focus on any ommisions.
    6. (sorry 5 isn’t enough!!) “is your diabetes well controlled?” Never sure how to answer that one! I just do my best & move on.

    Look forward to hearing what happens next. Language matters!

  21. Hi Philippa
    I completely agree with your comments.
    I saw an advert for (non NHS) foot care today which emphasised that ‘registered diabetics’ should get foot care. I’ve never heard of a registration system for people living with this condition; I rolled my eyes so far back and almost fell off my chair. More objectification of human beings.
    Best wishes

  22. Language is such a personal, individual thing, which is why healthcare professionals should modify their language to the person in front of them.
    I am a healthcare professional myself, as well as a person with Type 1 diabetes, so the word ‘patient’ is ok for me – even though I am not a patient ‘patient’! Do not call me a ‘service user’ however – to me it just reminds me how much I cost the state!
    As for PWD or ‘diabetic’, I do try to remember to say “I have type 1 diabetes” rather than “I am diabetic” but it is just too long-winded to say “I am a person with diabetes” and life is better without acronyms – except for on Twitter! 🙂

  23. Hi Annie and Rosie, well done for kicking off this conversation and sorry I could not listen in to the chat last night. I will go back and review it when I have a chance. I read the Australian Statement yesterday and it kicked off reactions in me that were not all good so I promised Annie I would try and detail them out a bit, So here goes.
    The first page of the statement can stand as a generic statement for all communication – other than the first paragraph which is specifically about the prevalence and impact of Diabetes. It is what I call a border collie book. When I had a border collie pup I went to the pet shop to buy a book on border collies. I picked one up and had a look and thought let’s see how it is different from the one on labradors and on spaniels, etc. The only differences were the photographs used the wording was the same and this is how I feel about the Statement. Much of it uses good words that are applicable everywhere.

    I may be overegging it but on first reading I felt there was a ‘us’ (health professionals’ and ‘them’ emphasis and though agency is noted on behalf of the person with diabetes it is only there briefly. The emphasis that comes through is on how can ‘we’ make ‘them’ see sense and do what ‘we’ say.

    Personally I have worked hard since being diagnosed a year ago to keep my numbers in range. The hour I get with the nurse for a review once a year tells me that as my numbers are in range I do not need to test and therefore i do not need script refills of strips and needles. I look after myself 99.9% of the time – most people do but those with chronic conditions have a name for it – selfcare.
    The nurse does not get that my numbers are in range because I test regularly daily. Similarly once diagnosed the boundaries changed on what was ok for cholesterol. Suddenly my 4.4 was too high now I was diabetic and they wanted it under 4. I declined the offered statins and said I wanted to see what my change of diet would do. It is now 3.7 and what is on my record is “Refused treatment”.

    My final, for now, peeve, is the stigma of language and attitudes around having Type 2 diabetes – it is reflected in some of the comments above. I do not want my Type 1 mixed up with their Type 2 – the Type 2s did it to themselves through their lifestyle choices. They ate too much, moved too little – emphasised by those television programmes that always film overweight people’s waistlines. Well there are many reasons why people may have weight problems and our society does not help people live a healthier lifestyle. Individual pathology is not helpful, nor individual blame. My own diagnosis came out the blue after chemotherapy having had no prior issues with insulin resistance. But even that says I am distancing myself from ~Type 2s who gorge on burgers and chips every day. I do not believe that is helpful.

    Language is important and drives attitudes and culture. Good luck with the campaign to shift it..

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