Learning from lived experiences of chronic disease during COVID-19

At the start of COVID-19, Ashley discovered she was pregnant. As a person living with diabetes, she knew her pregnancy would be considered high risk, but COVID-19 made the journey much more complex. Healthcare visits were often via telehealth and other appointments to prevent diabetes-related complications were cancelled or postponed. Ashley had to advocate to attend appointments in-person, even for physical check-ups, and she was required to attend alone.

“You could tell the clinic was really stressed … it was quite isolating going to appointments by myself.

~ Ashley

Ashley is not alone in her experience of managing a chronic condition during COVID-19. One in two Australians have a chronic disease and one in five have multiple conditions.

Throughout all the uncertainty, people living with a chronic disease have juggled an ongoing balance – managing an existing condition while minimising risk of exposure to COVID-19. At the same time, restrictions have reduced access to risk assessment, early detection, treatment, and supportive care.

Now, as we begin to look beyond COVID-19, we can learn from the experiences of people living with chronic disease to improve our health system. Access to information, ongoing care, and mental health support are core pillars to support people with chronic conditions during and after COVID-19.

Information and communication are paramount

A crucial lesson from the pandemic response is the need for clear, reliable information to guide action and counter misinformation.

“Because there is not much information, your mind starts to play tricks on you.” 

~ Chris

COVID-19 caught us on the back foot and there was a lag in public health messaging. Government campaigns focused on reducing transmission and the media highlighted the increased risk for older people and people with chronic disease, which heightened the anxiety felt by many.

Advice to #StayHome added to the confusion. For many people with chronic disease, this was not a valid option and created a sense of conflict. Some people found themselves weighing up the risks, relying on self-management and minimising their interactions with the medical system.

“It is fear, I guess. I’m being my own doctor at home I guess.”

~ Nicola

Chronic disease organisations stepped in to fill the gap and provide a trusted source of information. Cancer Council Australia, Heart Foundation, Kidney Health Australia, Stroke Foundation, and Diabetes Australia established campaigns, dedicated FAQ webpages, news updates, helplines, online forums, and webinars to provide accessible information specific to chronic conditions and COVID-19.

A responsive universal health system facilitates access

While global health systems buckled under the weight of COVID-19, our universal health system provided a solid foundation.

Free testing clinics supported early detection and hospitals set up COVID-19 management plans to maximise patient and staff safety and ensure essential services would remain available. Nine months after the first case in Australia and we now have fewer than 20 patients in hospital for COVID-19.

Even during COVID-19, many chronic conditions, like diabetes, kidney disease, heart disease, stroke, and cancer would require ongoing access to regular and emergency care. However, data and anecdotal evidence showed a drop in ED presentations and primary care visits for the management of chronic disease during the height of the pandemic, sparking concerns that the short and long-term impacts of chronic disease would be compounded by COVID-19.

It’s a bit hard when you have the COVID in the back of your head. Before COVID I would have called the ambulance and I wouldn’t have hesitated.

~ Nicola

The swift introduction of telehealth demonstrated a responsive health system and recognised the need for ongoing access to care while reducing risk of COVID-19 transmission. However, there are stories about poor technology, lack of training, administrative mix-ups and an overwhelming use of telephone rather than videoconference. But there are also examples of its success for referrals and scripts and enabling people to participate in joint calls with multiple members of their healthcare team.

“Opening up telehealth and having it more accessible has been fantastic … It would be really nice to have a mixed approach going forward.”

~ Ashley

There is support for the continued delivery of telehealth, alongside traditional face-to-face consultations to facilitate access based on consumer needs and preferences. Suggestions for improvement include quality frameworks, training to upskill providers, and technical support to improve connections.

Physical and mental health are interrelated

Mental health has emerged as a crucial issue during the pandemic. Mental and physical health are inextricably linked, and COVID-19 has created a set of conditions that exacerbate mental illness through social isolation, workforce concerns, financial insecurity, and increases in risk factors.

“In the early days, there was that sense of panic, particularly if you had a chronic condition or were of a certain age.

~ Chris

Early research showed mental health problems were much more prevalent during the pandemic and government announcements of funding were important to ease the strain on existing mental health resources.

A common theme emerging from people with chronic disease was fear, particularly during lockdowns. A Diabetes Australia survey found more than 40 percent of respondents said COVID-19 had a negative impact on their mental health and one in three said COVID-19 made them more anxious about their diabetes.

In Victoria, the Cancer Council helpline recorded a 22 percent increase in calls, with the helpline recording higher levels of caller distress and higher rates of referrals to specialist psycho-oncology counselling to provide support. Key themes from calls included: anxiety around attending appointments, fear of dying alone for both patients and families, ongoing financial and practical concerns, and carers feeling isolated or not being able to attend appointments with loved ones.

Amid restrictions, the Heart Foundation held virtual events with specialists and psychologists to prioritise heart health and emotional wellbeing during COVID-19, and Facebook groups enable people to support each other.

“This was very informative for us all struggling with the uncertainty in the world at the moment and raising awareness.”

~ Nicola

Similarly, the Stroke Foundation enableme website includes blogs by people living with stroke and online community discussions to share information and connect people with others in similar circumstances.

“Nothing about us without us”

We know that chronic diseases will continue beyond COVID-19. As we learn from the initial response to the pandemic, the views, voices, and experiences of people living with chronic disease should be at the heart of any discussions to improve our health system.

A special thanks to Chris, Ashley, and Nicola for sharing their stories and to the teams at Cancer Council, Heart Foundation, Stroke Foundation, Diabetes Australia, and Kidney Health Australia for sharing resources.

About the author

Portrait of Emma LonsdaleEmma Lonsdale is the Executive Officer of the Australian Chronic Disease Prevention Alliance (ACDPA), which brings together Cancer Council Australia, Heart Foundation, Diabetes Australia, Stroke Foundation and Kidney Health Australia to jointly promote prevention, risk assessment and early detection of chronic disease. Emma has worked in health policy roles in government and non-government organisations for more than 10 years and holds a Master of Health Policy from The University of Sydney.