Foreword

Introduction to the 2nd edition

The language used by healthcare professionals can have a profound impact on how people living with diabetes and those who care for them experience their condition and feel about living with it day-to-day. At its best, good use of language, both verbal and written, can lower anxiety, build confidence, educate, and help to improve self-care. Conversely, poor communication can be stigmatising, hurtful and undermining of self-care and have a detrimental effect on clinical outcomes. The language used in the care of those living with diabetes has the power to reinforce negative stereotypes, but it also has the power to promote positive stereotypes. This document aims to raise awareness of the importance of positive, supportive language during clinical encounters with all those living with diabetes across the life course.

People living with diabetes internalise messages from the media, from those around them, but most of all from their healthcare providers. When these messages are perceived negatively, whether it is intended or not, this can lead to feelings of shame, guilt, and resentment, which may never be reversed. For example, for those diagnosed as children or as a young person, these reactions can set the scene for a whole lifetime of added burden of living with diabetes.

In this document, the authors, people living with diabetes and supporting organisations have set out practical examples of language that will encourage positive interactions with those living with diabetes and subsequently positive outcomes. These examples are based on research, our work with young people living with type 1 diabetes, as well as adults living with diabetes, and is supported by a simple set of principles.

The preferences of those living with diabetes of all ages as to how they wish to self-identify or be addressed should always be respected but it is important to remember that the relationship with healthcare providers and those with whom they interact is often not an equal one. It is recommended therefore, that all professionals working with the diabetes community, including healthcare professionals, commissioners, educators, and those in the media who report on the condition, adopt the principles and practice set out in this document. Our recommendations are pertinent for both ‘in person’ clinical encounters as well as those where remote technology (for example online conversations, facetime, telephone, and email) is used.

Cathy Lloyd, The Open University
Rosie Walker, Successful Diabetes
Based on the introduction to the 1st edition by Anne Cooper, living with type 1 diabetes and Bob Swindell, living with type 2 diabetes.

Principles and practice

The following section sets out the principles for good practice for interactions between healthcare professionals and people living with diabetes, drawn up with reference to the experiences of people of all ages who live with diabetes, healthcare professionals and published research.

• Be aware that language, both verbal and non-verbal, has enormous power, which can have positive or negative effects, and these can be long-lasting: ‘labels last’ as Rose Stewart, diabetes psychologist, puts it
• Recognise that some words, phrases, and descriptions are potentially problematic, whatever the intention of the user – for example ‘diabetic’, ‘disease’, ‘compliance’
• Use language (including tone and non-verbal gestures) that is:
  • Free from judgement or negative connotations, particularly trying to avoid the threat of long-term consequences or scolding/ ‘telling off’
  • Person-centred, (also known as person-first) to avoid labelling a person as their condition
  • Collaborative and engaging, rather than authoritarian and controlling
• Notice and review the use of common expressions and what underlying attitude to them may convey, regardless of your intention
• Avoid language which attributes responsibility (or blame) to a person for the development of their diabetes or its consequences
• Avoid language that infers generalisations, stereotypes or prejudice, or links one individual with previous experience of others of a similar background or in a similar situation
• Use or develop an empathic language style which seeks to ascertain a person’s point of view of their condition, rather than assume it
• Listen out for a person’s own words or phrases about their diabetes and explore or acknowledge the meanings or experiences behind them
• Become alert to the use of language and consider if it may be creating a negative effect
• Consider how to limit any negative effects from language used, both for yourself and with others around you.

“What’s your diabetes control like?”

• For someone living with diabetes, this question seems to focus solely on their diabetes and their blood glucose levels rather than their whole life, how diabetes fits into it
• It may also assume that diabetes can, in fact, be ‘controlled’, ignoring the many variables that contribute to clinical outcomes and the daily efforts people make to incorporate the demands of diabetes into their lives.

Possible alternatives:

• Avoid the idea of ‘control’ and discuss how diabetes is affecting the person’s life in general
• Be more specific about your intention: “Can we talk for a few minutes about your blood glucose levels, so I have a better idea of how things are going for you?”
• Ask the person about their perspective and relate your following conversation to that, using similar language to them
• Be aware of your tone and non-verbal signs when asking any questions and aim for these to be empathic. For example, trying not to sit behind a desk, which can indicate a position of authority and control. This may be a particularly important consideration in relation to children and young people.

“It’s probably one of those non-compliant type 2 diabetics who couldn’t care less about looking after himself.”

• Judging, blaming, or shaming a person who is experiencing the consequences of diabetes is common
• People living with diabetes may also be held up as ‘threats’ or ‘bad examples’ to others living with diabetes in an attempt to improve someone’s perceived lack of self-management
• There is no linear relationship between ‘compliance’ or ‘adherence’ and good health. Indeed, these words imply an unequal relationship between the healthcare professional and the person living with diabetes, whereby the latter must do as they are told and if not, then they are ‘naughty’ or need ‘telling off’ (see below)
• Remember that living with diabetes does not make a person more likely to follow health messages (for example, eating healthily or exercise) compared to someone without diabetes
• Healthcare professionals can tend to see successful outcomes as reflecting on themselves and negative outcomes to reflect on the person living with diabetes.

Possible alternatives:

• Become aware of using terminology such as ‘compliant’, ’non-compliant’ or ‘adherence’ and focus on supporting the person living with diabetes and try to find out about their current situation and how it might be affecting their diabetes or vice versa
• Aim to find ways of describing a person’s current situation rather than providing an opinion or judging their past behaviour: for example, rather than ‘he/she/they has/have not had good diabetes control and now has a complication as a result, try ‘they are experiencing XY condition and they also have diabetes’
• Try using ‘person-first’ language, for example ‘person living with diabetes’ rather than ‘a diabetic’. Some people, but not all, feel the use of ‘diabetic’ is acceptable, so if you are unsure, ask the individual, rather than assume
• Beware of talking about someone to others, especially other people living with diabetes, in negative or judgemental terms, whatever your intentions.

“Should you be eating that?”

• People living with diabetes often feel criticised or judged by others, including healthcare professionals, about their food choices and eating habits, especially in the context of their weight. Children and young people can be particularly prone to disordered eating as a result of this emphasis, including eating disorders. These add to the distress and burden of living with diabetes
• Food serves many psychological functions, including emotional regulation and reward
• Healthy eating education is important. However, putting this advice into practice can be a struggle
• For people who are using food for emotional or ‘non-hunger’ reasons, extra support may be needed.

Possible alternatives:

• Remember to treat discussions or questions about eating or weight with great sensitivity
• Shifting the focus from the ‘what’ and ‘how much’ of eating to exploring the reasons why someone eats the way they do, is more likely to lead to a helpful discussion
• Try an invitation such as: “there are many reasons why we eat, would you like to talk about them?”

“The scariest time in my life was changing over to the adult clinic… they spoke to me so differently.”

• Transition from child to adult services can be a very tense and sometimes confusing time for young people that needs careful explanation and management of expectations
• The language and tone used can sound very different and be a stark contrast which, without preparation, might make or break a young person’s desire to attend in future
• Young people report that they feel less supported in adult services if transition is not managed well, for example seeing different healthcare professional on each visit, or being alone in a consultation.

Possible alternatives:

• Make arrangements for healthcare professionals from children’s and adult services to jointly consult in clinics with young people, to plan and provide transition introductions, or hold meetings or focus groups to explain and discuss potential differences
• Hold meetings with your specialist young people/adult colleagues to better understand each other’s services, to be able to relay this to young people
• At any consultation with a young person living with diabetes at or approaching transition age, ask what their concerns are about transition or being in a new clinic and what their questions are. If you are not a specialist healthcare professional, you can still help to explain, reassure or signpost
• Consider if you need to find out more about best practice on transition services.

“I hate diabetes. It’s so hard for me to control what I eat and do everything, it is a big effort.”

• Phrases such as these said in a clinical encounter, may be traditionally considered by healthcare professionals as ones that show ‘denial’ or ‘lack of motivation’. They are sometimes met with the reaction that people living with diabetes should just ‘get on with it’, or at best, a sign that someone is ‘not ready to engage with their diabetes’
• Instead, these statements may indicate the presence of diabetes distress, a clinically recognised response to the challenges of living with diabetes. It can reflect the often overwhelming demands of managing diabetes daily and it can be increased, for example if there are negative interactions with healthcare professionals. It may also indicate challenges within the home/family/friends environment where the needs of the person living with diabetes are different from others in the same household/peer group
• It is important to address diabetes distress for many reasons, not least because it is directly linked with blood glucose levels that are above target and negative health outcomes, as well as having an adverse effect on quality of life
• Distress can be recognised and considered when supporting people living with diabetes of any age; so being aware of the words used in clinical encounters is important.

Possible alternatives:

• Recognise and acknowledge diabetes distress and its impact on well-being and diabetes self-care
• Address comments made by the person living with diabetes that might indicate diabetes distress and explore the ways that diabetes has an emotional impact
• Acknowledge the expression of these strong feelings: for example, “thank you for sharing how you feel with me” or “diabetes isn’t just medical – your feelings about it are important too”
• Avoid the temptation to dismiss or minimise such statements, or put them down to, for example ‘being a teenager’ or ‘hormones’, or falsely reassure, for example “you’ll feel better in time” or “things will stabilise soon”.

“I’ve been a bad diabetic, I know you’re going to tell me off.”

• This is a common statement used by an individual attending a clinic and may stem from previous experiences with healthcare professionals. Its use is linked to stigma and negative stereotypes
• If a person refers to themselves as ‘a diabetic’, or other similar phrases, this may suggest they have been made to feel ashamed of their condition, for example during an episode of hypoglycaemia or their self-management approach
• The language of consultations between healthcare professionals and the person living with diabetes can be detrimental if we continue to focus on the ‘good’ or ‘bad’ or ‘failing to’ carry out self-management activities
• It can imply that following instructions will result in perfect glucose levels, even though it is known that the tools to manage diabetes are far from perfect
• Advising people to ‘follow the rules’ of self-management can lead to feeling helpless and inadequate when unachievable
• Shame may prevent the person living with diabetes confiding in their healthcare professional or accessing care/attending appointments for fear of judgement or a negative response.

Possible alternatives:

• Explore what someone means when they say such things as “I’m a bad diabetic” – rather than dismiss, agree, or admonish
• Try to avoid words such as ‘should’ or ‘can’t ‘or ‘must’ or ‘must not’. These suggest that instructions must be followed or otherwise the individual may not achieve ‘perfect’ self-management. Instead think about using words like ‘could’ or ‘consider’ or ‘you could choose’
• Avoid the word ‘failed’ as it may precipitate shame or imply disappointment. Using ‘was not able to’ or ‘on this occasion, didn’t…’ is more neutral
• Avoid ‘patient with diabetes’ – it can imply that the person is not actively participating/passive. ‘Person’ is a good alternative – people are only ‘patients’ for a tiny amount of their time
• Avoid ‘disease’ or ‘suffering with’ or ‘burden’ due to the negative implications. ‘Has diabetes’ or ‘is living with diabetes’ is more accurate
• Be sure to respond to words or behaviour that imply shame or embarrassment. For example, ‘there is really no such thing as ‘good’ or ‘bad’ diabetes’ or ‘you’re not the sum of your diabetes numbers, it’s your efforts that matter most’.

Conclusion

Seek to be more:

• Empathic – for example, “it sounds as though your diabetes is really hard to manage at the moment”
• Empowering – for example, “what changes do you feel are needed right now?”
• Respectful – for example, “I appreciate you coming to our appointment today”
• Trust building – for example, “I will definitely discuss your situation with XY and let you know what they say”
• Person centred – for example, “what thoughts have you had yourself about your recent glucose levels?”
• Culturally competent – for example, exploring individuals’ cultural beliefs about diabetes
• Encouraging – for example, “I can see the effort you’re putting in, keep up the great work!”
• Clear – for example, “yes, your HbA1c this time is higher than the recommended range”
• Reassuring – for example, “diabetes brings lots of ups and downs, but it is manageable and there are lots of ways you can deal with it”
• Understanding – for example, “now doesn’t sound the best time to be concentrating on your diabetes”
• Exploring – for example, “what makes you say, ‘I feel like a failure?’”
• Collaborative – for example, “let me talk you through the different medications and then see what you think would suit you best”
• Congruent in words and behaviours – for example, looking at the person when welcoming or asking questions.

Seek to be less:

• Stigmatising – for example, “you’re in denial”
• Shaming or blaming – for example, “it’s being so overweight that is causing you to have all these problems”
• Authoritarian – for example, “you must take your medications properly in future”
• Demanding – for example, “before you come to see me, I want you to take 4 blood tests a day for 3 days, so I can check what’s going wrong”
• Disapproving – for example, “you aren’t meant to take your insulin like that”
• Assuming about a person’s cultural background – for example, “you look like you are from a XY background so your religion must be XY and might well impact on your diabetes at certain times of the year”
• Discriminating – for example, making assumptions about someone, “I don’t think they’d get much from a diabetes education class”
• Stereotyping – for example, “people from XY background often dislike the idea of injections”
• Assumptive – for example, “I think you cope best with once a day insulin, as it’s simpler”
• Pre-judging – for example, about someone, “no-one in that family has ever taken much notice of their diabetes, they will be the same”
• Judgmental – for example, “I think you’re making the wrong decision”
• Threatening – for example, “If you don’t improve your control you will end up on insulin”.

Practical examples and models have been developed which show how language matters in a service.

The following have originated in Children and Young People’s services but are relevant for any service supporting people living with diabetes who wish to make explicit their focus on language matters.

Example 1: Clinic Posters – Leeds Children’s Hospital

Leeds Children’s Hospital have developed posters to explain the philosophy of language used in their clinics and shared these in clinical areas.

Example 2: The Ormskirk Model of HbA1c/time in range

The Ormskirk team have developed a new HbA1c and time-in-range scale, aimed at creating a non-judgemental discussion based on the principles in this document, and solution-focussed practice.

For references and contact details, see the reference section at the end of this document.

Language matters working group members – 1st edition

• Michael Connellan, Juvenile Diabetes Research Foundation
• Anne Cooper, person living with type 1 diabetes
• Naresh Kanumilli, Greater Manchester Strategic Clinical Network
• Jill Hill, Co-Chair, TREND-UK
• Richard IG Holt, University of Southampton
• Daniel Howarth, Diabetes UK
• Cathy E Lloyd, The Open University
• Partha Kar, NHS England
• Dinesh Nagi, Association of British Clinical Diabetologists
• Sarita Naik, University College Hospital
• Jen Nash, Positive Diabetes
• Helena Nelson, Juvenile Diabetes Research Foundation
• Katharine Owen, Oxford Centre for Diabetes
• Bob Swindell, Diabetes UK and parkrun Outreach (Diabetes)
• Rosie Walker, Successful Diabetes
• Clare Whicher, Young Diabetes & Endocrinologists Forum representative
• Emma Wilmot, Derby Teaching Hospitals

Supporting organisations – 1st Edition

• Association of British Clinical Diabetologists
• Diabetes UK
• Juvenile Diabetes Research Foundation
• NHS England
• TREND-UK
• Young Diabetes ans Endocrinologists Forum

With grateful thanks to additional contributors – 2nd Edition

• Sam Barnard, Calderdale and Huddersfield NHS Foundation Trust
• Kathy Cox, Children and Family Health, Devon
• Fiona Campbell, Leeds Teaching Hospital NHS Trust
• Chris Gardner, Laura Nicholson and Paula Smith, East Lancashire Hospitals NHS Trust
• Aoibhinn McCarthy, Philip Mynes, Hailey Tumilson and the young people living with type 1diabetes, Diabetes UK Northern Ireland ‘Our Voices, Our Lives’ programme
• Fulya Mehta, Alder Hey Children’s Hospital
• May Ng, Southport and Ormskirk Hospital NHS Trust
• Tabitha Rendell, Nottingham University Hospitals NHS Trust
• Clare Semple, University Hospitals Bristol and Weston NHS Foundation Trust
• Rose Stewart, Betsi Cadwaladr University Health Board, UK Diabetes Psychology Network
• Reza Zaidi, Royal Liverpool and Broadgreen University Hospitals NHS Trust

References and resources

• Diabetes UK Emotional Health Guide
• Guyers, M., Bray, D., Ng, SM (2020). Language Matters: image matters too. The Ormskirk Model: a newHbA1c-time-in-range solution focussed model. Diabetes Care for Children and Young People, 9, 2, P1
• Language Matters Diabetes. Website containing all published documents worldwide relating to language
• Ng, SM., Hulikere, S. (2022). Diabetes Transition: A time to act. Diabetes care for children and young people
• NICE guidance for diabetes (type 1, type 2, children and young people)

Webinars and associated materials relating to Language Matters

• Language matters: supporting emotional health in diabetes care – The Open University
• Language matters: the impact on people living with diabetes – The Association of British Clinical Diabetologists
• Language matters and supporting emotional health – Successful Diabetes

Publication reference: PRN00601