The role of education in tackling diabetes stigma

Beyond the impact of the COVID-19 pandemic on routine care, other factors impact the physical and mental wellbeing of people with diabetes. Lorna Rothery spoke to Dr Mayank Patel, a consultant in diabetes at University Hospital Southampton and member of the DRWF editorial advisory board, about the importance of education in changing attitudes towards type 1 and type 2 diabetes stigma

According to the latest figures, more than 4.3 million people in the UK live with diabetes; around 8% of people live with type 1 diabetes and around 90% with type 2; the remaining 2% have other forms of the disease. Like many areas of healthcare, the COVID-19 pandemic impacted routine diabetes care, and people with diabetes were also more vulnerable to developing severe illness if they contracted the virus. Along with the physical challenges that come with diabetes, the condition can also affect people’s mental wellbeing. In fact, 80% of people in the UK have experienced negative attitudes because of their diabetes. ⁽¹⁾ Lorna Rothery recently interviewed Dr Mayank Patel, a consultant in diabetes at University Hospital Southampton and a member of the Diabetes Research & Wellness Foundation (DRWF) editorial advisory board. During the interview, they discussed some of the key challenges that people living with diabetes may face and emerging topics of interest in diabetes-related research.

How has the COVID-19 pandemic impacted routine diabetes care?

As a result of the COVID-19 pandemic, there were limitations on face-to-face consultations between GPs and patients with diabetes. The lack of capacity and infrastructure for telephone or digital consultations also caused delays in patients accessing specialist or routine diabetes care. Research now shows that some diabetes patients experienced adverse outcomes over time due to the inability to get timely support. This ultimately led to further deterioration of patients’ health and resulted in more negative outcomes.

For those living with type 1 diabetes, what are some challenges they may face when they are unable to access routine diabetes care and support?

In primary care, there can be variability in the levels of expertise around type 1 diabetes and how it differs from type 2. It’s not the case that everyone with type 1 diabetes is under a specialist, as some are under shared care with their GP, and some are exclusively under hospital care. Patients under GP care may choose to see specialists regularly or be referred based on clinical need.

The pandemic has affected people differently based on individual circumstances. Specialist teams have done their best to support patients. Still, there have been delays in appointments being offered due to healthcare professionals being deployed for different COVID-based roles, which meant that individuals may have experienced delays in their routine care appointments. One would like to believe that if you had a problem with type 1 diabetes and you were sick and hospitalised for for any reason, you would still receive the care you need.

How can living with type 1 and type 2 diabetes impact a person’s emotional wellbeing? What could be done to tackle diabetes stigma?

DRWF continues to campaign and work to raise awareness to help reduce diabetes stigma, among both the general public and healthcare professionals. People with diabetes often face misconceptions and myths that they have to debunk, which can be mentally and physically exhausting.

There is still a lot of diabetes stigma that unfortunately persists today. It may take a while for people to have a better understanding of it. The increased sense of inclusion was one positive outcome of the pandemic. It is important to be kind and respectful to others, to have empathy, and to put ourselves in other people’s shoes before we act or speak. We should always consider how our actions and words could affect someone else’s feelings.

The Language Matters document, created by NHS England, explains to healthcare professionals how to communicate effectively and sensitively without offending or judging people. ⁽²⁾ It is an excellent resource, but it will take time for everyone to adopt these practices. Unfortunately, we still hear complaints from patients about the insensitive language that hospital staff use, which is disheartening. We need to improve education, starting from the undergraduate level, on how healthcare professionals should communicate with patients, not just in diabetes care but across all areas of healthcare. I continue to lead on producing the free to download type 1 diabetes comic series, of which one issue focuses on stigma (volume 3) and also highlights the risks posed to people with type 1 diabetes if their blood sugar levels fall too low. ⁽³⁾

There is a lot of stigma around obesity and weight when it comes to type 2 diabetes. I am aware of at a partner document being produced or drafted that talks about the importance of language and how it impacts individuals who are overweight. (4) It encourages people to be mindful of their words and how they may affect someone. The challenge is to make this mindset shift stick and educate individuals on how to communicate effectively with people. This may be an uncomfortable process, but creating a more supportive and empathetic environment is necessary.

Equally, individuals living with diabetes need the mental strength to express their discomfort if labelled in a way that upsets them. Speaking up is crucial because not everyone knows the impact of their words. By addressing the issue, we can bring about a behaviour change. For instance, if someone is labelled ‘diabetic,’ they can ask to be addressed as someone who has or lives with diabetes. While certain descriptors might seem trivial to others, they hold significant value to the person being described. It’s essential to communicate respectfully and inform others of our preferences.

Can you highlight any recent developments in diabetes-related research?

In the case of type 1 diabetes, newer and more advanced technologies supporting glucose monitoring without finger pricks and smarter personal insulin infusion delivery pumps are being rolled out nationally. However, more long-term data to assess their impact on type 1 diabetes related health outcomes after several years of clinical use is awaited.. One area of interest suggested for research is the link between menopause and diabetes. Patient groups are keen to learn more about this area and to explore it further. Stigma is also an issue that arises frequently. In my opinion, more research work also needs to be conducted on diabetes care in hospitals, including for those with diabetes who have undergone operations, as it has been observed that diabetes can cause certain complications in these cases. A deeper dive is required to explore different approaches to managing these complications, and we can potentially find ways to manage these issues more effectively by investigating them.

References

1. https://www.diabetes.org.uk/about-us/news-and-views/how-were-working-tackle-diabetes-stigma
2. https://www.england.nhs.uk/publication/language-matters-language-and-diabetes/
3. https://revolvecomics.com/read-diabetes-type-1-comics/
4. https://static1.squarespace.com/static/5bc74880ab1a6217704d23ca/t/612e32f5d423b36012a1bb16/1630417666068/FINAL_Obesity_UK_Language_Matters_2020.pdf

• DRWF funds diabetes research in the UK and around the world in order to understand the causes, prevention, treatment and management – our ultimate goal is to find a cure.
• DRWF United Through Diabetes is an educational event for people living with diabetes – for more information visit: https://www.drwf.org.uk/news-and-events/events/united-through-diabetes-2024/