General practitioner Dr Sara Biere-Rafi is one of 140 health professionals who works for C-Support, a state-financed organization that provides free information, guidance and advice to patients with Post COVID-19 Condition, also known as long COVID, across the Netherlands.
She and her colleagues in the organization have helped over 23 000 patients since the beginning of the pandemic, and even though cases of COVID-19 are not what they once were, she says there is no sign of waning demand for helping them, with an average of 800 to 1000 long COVID patients a month registering for help.
Results from a study published by the University of Groningen, Netherlands, in August 2022 suggest that 12.7% of people with COVID-19 – 1 in 8 – experience new or severely increased symptoms 3 to 5 months after their original infection, highlighting the pressing need for support to the thousands of people coping with a multitude of debilitating long-term symptoms.
Bridging the gap
“People turn to us because the care that exists isn’t sufficient,” says Dr Biere-Rafi. “There is still limited knowledge on long COVID among health care providers. Also, the care is very fragmented and doesn’t meet the needs of patients, especially those with debilitating symptoms. I am very concerned about the impact Post COVID-19 Condition is having and will have not just upon these people and their families, but also upon wider society.”
People can register for help from C-Support online if they are experiencing symptoms 3 months after their initial COVID-19 diagnosis. They then benefit from regular calls from the team, which mainly comprises social workers and labour experts, along with a medical team which consists of general practitioners, pulmonary (lung) physicians and an occupational health doctor.
“We speak to patients who are sometimes house- or bed-bound due to their symptoms, and live a very isolated life,” she explains. “They are too ill to participate in rehabilitation programmes and have nowhere to turn to for help.”
“We did some research with 8000 of our patients and found that 30% were unable to work due to their symptoms, and 45% had reduced their normal working hours by a half. Our data is supported by the numbers of long COVID patients who are turning to an employee insurance company for sickness benefit. If this number continues to grow, we will face significant problems. We must see an investment in better care.”
Many of those now contacting C-Support are doing so because they are reaching the end of their statutory entitlement for sickness benefit, which is 2 years, and could now lose their jobs, Dr Biere-Rafi tells us.
“At the start of the pandemic, the questions were more about finding some form of recognition and information on the symptoms. Now, people are looking for legal and financial advice, as well as asking if there are any treatments that they haven’t yet tried that may help them.”
A need for specialized clinics
In addition to offering information and advice to patients, the team also offers education to health care professionals and participates in programmes researching the condition.
The organization is calling for specialist Post COVID-19 Condition clinics, which would integrate and centralize care for patients, educate health professionals, and facilitate large-scale research.
“This is a disease about which we still need to learn so much and some of the answers may be sought in previous experiences with post-infectious diseases,” says Dr Biere-Rafi. “We have been talking to the government about the need for specialized clinics, more funding for research and for more national and international collaboration. Since patients are desperately turning to unproven and sometimes dangerous treatments, urgent measures are needed.”
Across the WHO European Region, at least 17 million people were believed to have experienced Post COVID-19 Condition in the first 2 years of the pandemic alone. WHO/Europe is working with Long COVID Europe, a network of long COVID patient associations run by current and former long COVID patients, to ensure that the condition is taken seriously by governments and health authorities through greater:
- recognition and knowledge sharing
- research and reporting
- rehabilitation.