Matt Williams is a paediatric diabetes specialist nurse at Queen Elizabeth Hospital in Kings Lynn. He also lives with type 1 diabetes. We spoke to him about his thoughts on the importance of language by healthcare professionals when speaking to people with type 1.
How important do you think language is when talking to people with type 1 about their condition? What effect can language have on the person with type 1?
Language is very important and can have a huge impact on how someone with type 1 diabetes feels about managing their condition. When someone leaves a clinic appointment where they have been scolded about the results of their HbA1c, there is no motivation to change the way they manage their condition. However, when someone is given the space to talk about their condition freely and constructively with a healthcare professional, then they are more likely to come out of the appointment willing to make changes if necessary to manage the condition.
Could you talk about any good/bad experiences with healthcare professionals’ language as someone living with type 1?
I have had type 1 for a long time so I’ve had a range of experiences. There are a few incidents that stand out for me. A year ago after moving clinics I was told in an appointment that if I didn’t lose weight then I only had ten years to live. I was so despondent afterwards that I remember snacking without taking insulin because I didn’t see the point anymore. It didn’t matter that I go to the gym multiple times a week and was already aware of the need to lose weight. Telling me that my lifespan was limited did not shock me into suddenly losing weight. It made things much worse.
I recall another incident when I had recently moved onto an insulin pump and was keeping a pump diary. I was checking my blood glucose 10 – 12 times a day and recording it in the diary. I don’t think the doctor who saw me was familiar with insulin pump diaries and he misread the diary and accused me of not testing my blood glucose enough. I left the appointment and was so angry and upset that for the rest of the day I couldn’t focus on my work.
It’s not all bad though – I have had many positive experiences. I usually find that diabetes specialist nurses, dieticians and psychologists are good at communicating. I feel that a good interaction occurs when I feel like I’m not just seen as a number but a person. I think that the mental health aspect of type 1 should be considered more than it is currently and when healthcare professionals ask about how I’m doing beyond my diabetes, I always feel better able to open up and talk about issues that affect my blood glucose.
How have you used your experiences living with type 1 to shape the way that you talk to others with the condition?
I think it’s important to note here that I don’t always mention that I have type 1 myself. I have found that although useful in some situations, it is not always relevant – sometimes the conversation can then turn to me rather than the person I am there to help. There is an assumption that HCPs with type 1 themselves know exactly what they are doing but this isn’t always the case. Sometimes we don’t ask for support because we don’t want to challenge the notion that we don’t need it as much. I have definitely been in appointments where assumptions are made about my knowledge that aren’t true and I therefore miss out on learning something valuable.
Having said all this, there are some ways my experience with type 1 helps. Firstly I know the importance of listening to how someone is feeling. There is a person behind the condition so I try to take a more holistic approach during appointments. Secondly I consider what is achievable for the person in front of me. If someone doesn’t ever check their blood glucose, telling them that they have to check it at least the recommended four times a day seems like too much of a leap. Setting an achievable goal is much more likely to work (like checking once a day and increasing from there). Tone is important. Getting angry with someone because of their control won’t achieve anything. I remember a time when I was not willing to check my sugars and being scolded would not have helped .
What would you want a healthcare professional to consider when talking to someone with type 1?
Remember that every person with type 1 is an individual – we don’t all need or want the same things. Anger is rarely the right solution – no one wants to feel judged. In my place of work we had to stop having consultants, nurses and dieticians in the same appointments as it felt a bit like a jury out to convict the person having the appointment! Now we only have a consultant in the room and the others come in if needed.
There are certain words that can have an effect on how someone feels about their condition. I have heard the term ‘cheating’ used to describe when people eat but don’t take insulin for it. This is unhelpful and accusatory.
Some people refer to blood glucose checks as tests. I’m not fond of this terminology as it suggests that you can pass or fail. I want people to think of these numbers as useful data points only. I know that’s easier said than done!
Download the Language Matters publication
Language Matters is available to download at the NHS England website.