Living through Covid-19 with type 1 diabetes: Emerging findings

Chris Bunn, an Investigator in the Disability and Health Conditions stream, shares emerging findings from interviews with people living with type 1 diabetes during the pandemic.

The Covid-19 pandemic has been testing for most people in one way or another. Those living with long term health conditions have had to confront the additional challenges of judging how to protect themselves from Covid-19 while still being able to feed themselves, adapt to new routines, access medical care and remain connected to their family and friends.

Early on in the pandemic, people living with diabetes were told that they face greater danger from Covid-19 than others. Small-scale studies, such as this one in China, emerged rapidly and suggested that diabetes increases the risk of death from Covid-19. Since then, researchers have conducted larger assessments of the connection between diabetes and Covid-19 outcomes, and have confirmed that there is a strong link. Responding to these developments, diabetes groups have played an important role in reassuring their members that they are not at greater risk of catching Covid-19, reminding them that for most the virus produces mild symptoms.

While such reassurances have been welcomed by many in the diabetes community, it is clear many of its members remain concerned about Covid-19. This became apparent to us when we launched our study and appealed for people to participate in interviews. We received a large number of replies in a short space of time from people living with type 1 diabetes who wanted to share their experiences. While we have also interviewed people with type 2 diabetes, we decided to respond to the groundswell of volunteers from the type 1 community and to explore with them what their lives have been like during this period.

The disappearance of specialist care

So far, we have interviewed about half of our intended target of 25-30 people. Most of the people we have spoken to have told us that their appointments with diabetes specialists have been cancelled and no new appointment date has been provided. While our interviewees have been understanding of the pressures the health service is under, many also expressed concerns about this loss of care. One described how eye and nerve-related complications from their diabetes are no longer being monitored, telling me that they feared this leading to preventable damage being missed. Several others have echoed this concern, describing how the cessation of regular screening for complications worried them. This is not surprising, given so much diabetes care emphasises the importance of monitoring the complications that can build up over time.

Others we have spoken with have given us accounts of how lockdown measures prevented them from starting new treatments. Two of our participants were due to begin using an insulin pump – a device which releases insulin into the body throughout the day, allowing patients freedom from having to inject themselves regularly. Insulin pumps are often recommended for people who are finding it difficult to meet the blood glucose targets that their doctors are pursuing with them, suggesting that Covid-19 related delays may be keeping these patients from accessing the treatment they need to attain better blood glucose regulation.

Common to all of the accounts we have collected so far is a sense that communication between diabetes services and their patients could improve. With the exception of one interviewee, remote consultation via telephone or video has not been offered and no information provided on how to access care if needed. In one interview this was a complaint that was emphasised, with the participant telling me that it would have been of great comfort to have had a list of services to contact in the event that different needs arose relating to diabetes.

Negotiating new routines

For people living with type 1 diabetes, routines can be important for managing their condition. The timing, amount and type of food that they eat and physical activity they do can make a big difference to their blood glucose levels. Unsurprisingly, for many of our interviewees the restrictions of lockdown led to changes to their usual activities and foods. Some of those we spoke to described how this led to fluctuations in their blood glucose levels which they struggled to contain. Some increased their insulin consumption, but others accepted higher levels, preferring not to risk hypoglycaemia at a time when they feared the potential consequences of hospitalisation.

The impact of disruption to routines was not just described as a challenge to physical health. Our interviewees spoke of how they have struggled with the loss of social contact that their routines provided them with. Whether through work, socialising or even visiting favourite shop keepers, some of those we spoke to found the absence of in-person contact made them feel down and question their mental health.

Some silver linings

While the challenges of living with type 1 diabetes during the Covid-19 crisis have dominated our interviews so far, some have described some positive developments in their lives. One interviewee told us of how the furlough scheme had enabled them to take a break from working which they had not had since they entered full time employment at the age of 16. This break gave them the opportunity to reflect on the direction their life was taking and decide to enrol in and start an access to university course, with the aim of improving their future.

Another of our interviewees spoke about how lockdown has allowed them to witness the growth and development of their newborn baby in a way that would not have been possible without lockdown and furlough. This person emphasised that this was an experience that could never be taken away from them and was a source of emotional strength during an otherwise difficult period of life.

Looking ahead

From the interviews we have conducted to date, it is clear that people living with type 1 diabetes in Scotland have faced significant challenges during the Covid-19 pandemic. While this blog post has shared just a snapshot of what we are learning, it underscores the most important message we have been given from the community: diabetes care has faced massive disruptions and many patients are not being communicated with.

While it is too early to know the full extent of the consequences this disruption will have for the health of those living with diabetes in Scotland, early warning sirens are starting to sound. A study in Naples, Italy has reported that foot amputations among diabetes patients with foot ulcers have increased three-fold in 2020 when compared to 2019. As the Covid-19 pandemic continues, diabetes care in Scotland and beyond needs to adapt rapidly to limit the damage that avoidable complications can do to the lives of people living with diabetes.

If you or someone you know is looking for guidance on managing diabetes and accessing care at this time, Diabetes Scotland has some useful information. They also offer a helpline, which you can reach on 0141 212 8710, Monday to Friday, 9am to 6pm, or by email – helpline.scotland@diabetes.org.uk

Chris Bunn is a Lecturer in Sociology at University of Glasgow. His research is focused on living with, managing and preventing long term health conditions.