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Flat lining

A colleague (who is a dietitian, and an ultra-marathon enthusiast) recently shared a picture of her 24 hour libre blood glucose profile on Twitter. Nothing all that remarkable until you add in the fact that she also doesn’t have diabetes.

Image courtesy of Aisling Piggot @dietitianwales

While her overall time in range and average blood glucose are not surprising, people were shocked to see how variable her blood glucose was. What became instantly clear in the comments to her tweet is that people with diabetes, and parents of children with diabetes have been feeling immense pressure to achieve either flat lines, 100% time in target, or both. Now, this is definitely not an anti-technology post. I’ve seen people dramatically turn their diabetes management around because of having access to flash and continuous glucose monitoring, and the effects that the right tech can have on someone’s diabetes distress are often profound.

Having said that, we need to be clear on something:

Tech without the right education and support is less effective, and in some cases could do more harm than good.

Last year I attended a Diabetes UK Cymru event on Type 1 and Tech (available here: https://www.diabetes.org.uk/how_we_help/type-1-events/type-1-tech-conference). Two particularly striking messages stayed with me that day: firstly from Dr Pratik Choudhary’s talk, where he stated that looping algorithms using AI are having to make up to 100 corrections every day to keep people in range; secondly from the talk from Ashley Rolfmore of Quintech, whose researchers had identified more than 40 factors that could affect blood glucose on a daily basis:

Blood glucose modifiers from the Quintech talk

Bearing these issues in mind, is it any wonder that people with diabetes often feel like they’re facing an impossible task when it comes to achieving ‘good enough’ diabetes management?

When designing new technology and education, developers need to recognise that many people with diabetes might process information a differently from those who don’t live with a chronic condition. Judgement based on numbers has been drummed into PWD; numbers affect how many PWD feel not just about their diabetes management but about themselves as a person, and often more information just creates more opportunity for self criticism. It’s all too easy to assume that 100% time in target is what people should be aiming for – 100% is ‘perfect’, right? Similarly, when people see the peaks on a flash or CGM graph for the first time, it’s very easy to feel anxious about these and start to over-treat, not realising how long it takes for fast-acting insulin to start working.

So the implications for the ‘right’ education?

  1. It needs to be clear that there is no ‘magic’ technology, and that each form comes with it’s own benefits and downsides. While flash and CGM give us more knowledge about what’s going on, they don’t stop diabetes being an inherently unstable condition.
  2. Flat lines and 100% time in range should not the goal of monitoring, and are rarely achieved by people who don’t have diabetes. Showing reader data from people without diabetes during education sessions might help to communicate this.
  3. People who are highly anxious and/or have perfectionist tendencies might struggle with the increased information from flash or CGM. If someone’s psychological well-being is being compromised, they might need to think (with team support if they want it) about whether the tech is working for them right now.

All the technological advances don’t take away from the fact that people are complex and diabetes is hard to live with. Until there really is a ‘magic cure’ people with diabetes will need support, understanding and kindness. Now if only someone could develop an app for that…

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The Big Picture

Photo by Pixabay on Pexels.com

It’s diabetes week 2020 and this year’s theme is ‘The Big Picture’. This theme has been chosen partly to bring together people living with all types of diabetes; by encouraging people to recognise that despite many of the differences between the conditions (particularly type 1 and type 2), there are shared experiences and struggles.

One shared struggle is the lack of psychological care and support in diabetes services. It’s a well established fact that people with diabetes experience higher levels of distress than people who don’t have diabetes, and that this distress impacts on a person’s ability to manage their condition. Distress can often manifest in common issues like depression or anxiety, but people with diabetes also experience issues that only come along with diabetes, like diabetes distress, diabetes burnout and some diabetes specific eating disorders. Years of campaigning by people with diabetes and charities like Diabetes UK has brought increased attention to psychological issues and the lack of specialist support, yet progress on getting support in place has been frustratingly slow.

During the recent COVID outbreak, psychological advice has been crucial in helping people manage the difficult effects of living during a pandemic and going through lockdown. This will continue to be an essential area of work as the immediate threats of the virus subside, and people are left to manage the longer lasting psychological harms like grief and trauma. As diabetes services work on developing new ways of working for COVID and beyond, surely seeing the ‘big picture’ of the whole person, with mind and body together must be key in delivering effective care for everybody living with diabetes.