Dr Natasha Azzopardi-Muscat, Director, Division of Country Health Policies and Systems at WHO/Europe, argues that Long COVID is a complex condition requiring long-term rehabilitative care
“My whole life has been pulled out from underneath me like so many others with long Covid….“I need to reinvent myself. I can’t even lift my left arm up.” That’s how Jasmine Hayer, a 32-year-old yoga teacher from London, recently described to the BBC her experience living with “a post-COVID-19 condition” or what people now refer to as Long COVID. Unfortunately, Jasmine is not alone in her plight.
The COVID-19 pandemic has so far affected more than 151 million people in the wider European Region, with more than 1.7 million deaths. And while countries continue to struggle with daily new record numbers of newly infected people, the plight of the millions of people suffering from the long-term effects of a COVID-19 infection is still under-reported.
Most countries have pooled many of their resources to manage the waves of hospital admissions and acute cases, while also prioritising vaccination efforts to protect as many people as possible against severe cases. But the huge burden of “walking wounded” people such as Jasmine should also be part of national plans, if we truly are to leave no one behind in this unprecedented pandemic.
What is Long COVID?
WHO defines Long COVID as a “post-COVID-19 condition” that leaves people with persistent disabling symptoms.
How many people are affected with this condition is still unclear, but we know that approximately 10–20% of people with COVID-19 experience continued symptoms for weeks to months following a severe infection. This means that two years into the pandemic, the number of people living with Long COVID in Europe and Central Asia is likely to be in the millions. And the numbers are rising.
Long COVID can take many forms. People describe a wide range of symptoms (there are over 200 of them reported in the scientific literature) and the most common include persistent breathlessness, fatigue, pain, psychological symptoms and cognitive dysfunction or “brain fog”.
“As we continue to live with this pandemic and all its effects, national health systems have the responsibility to address all forms of stigma faced by Long COVID patients, while including a long-term rehabilitation plan that takes into account the many layers of this often debilitating condition.”
Unfortunately, studies show that people recovering from a COVID-related hospital admission suffer from more debilitating symptoms such as higher risks of respiratory, cardiovascular disease (heart failure, myocardial infarction, stroke), diabetes, renal, neurological and liver disease. One study revealed that one-third of COVID-19 patients were readmitted to hospital after discharge, and one in ten lost their lives. Children, often spared by severe COVID-19, can also suffer from Long COVID, something we are only beginning to understand.
As Long COVID becomes increasingly recognised as a new, long-term health condition, it is clear that health systems will face significant pressure on the services they provide for this group of patients, including their morbidity and the healthcare costs to manage people living with the condition.
How countries can address the needs of people living with Long COVID
Traditionally, health services provide specialist care based on specific organs or conditions — for example, heart or liver care, skincare, and so on.
But people suffering from Long COVID experience a wide range of symptoms that need prompt care across several areas. What we need is an integrated system that provides rehabilitation support that focuses on improving functional ability and quality of life.
Rehabilitation professionals do not work in a vacuum. They will need appropriate general medical support and leadership, so that they can provide the right support in a way that really addresses Long COVID’s complexity.
First, with Long COVID being a relatively new condition, countries need to invest in better research that understands how Long COVID develops and affects people’s lives. The good news is that a range of countries across the WHO European Region have already started taking steps in this direction. A recent overview found that a series of countries in Europe — including Belgium, France, Germany, Italy and the UK among others — have started carefully monitoring Long COVID patients in a number of ways.
In the UK, there are more than 80 NHS-run Long COVID clinics that closely follow and monitor patients. In Belgium, a primary-care-run initiative is setting up a new tool that will make it easier for primary care specialists to put in place rehabilitation plans for Long COVID patients.
These are promising and encouraging steps. What is needed next is a comprehensive data and information system that can carefully track whether new COVID-19 cases, the rise of new variants and vaccination rates affect the number of Long COVID patients. This will require substantial leadership and investment in all national health systems.
Second, countries will need to invest energy and resources in building new healthcare models that support patients across all care levels with a core rehabilitation team. The focus here will need to be on capturing patients’ wide range of symptoms and rehabilitation needs. That is the only way for health systems to provide a tailored treatment plan that really addresses every single patient’s condition.
Finally, and crucially, we need to address the real stigma facing people living with Long COVID. Too many of them have experienced disbelief in their condition, with their ill health left unaddressed for months. This has often led to feelings of shame and guilt, leaving people struggling to understand and address their condition. The mental health effects of this failure are hard to overstate. The fact that people like Jasmine have found the courage and determination to share their plight is an encouraging sign, but we will need to follow up with concrete solutions.
Looking ahead
As we continue to live with this pandemic and all its effects, national health systems have the responsibility to address all forms of stigma faced by Long COVID patients, while including a long-term rehabilitation plan that takes into account the many layers of this often debilitating condition.
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