A Dutch perspective: Long COVID support as crucial as ever as demand shows no signs of abating
General practitioner Dr. Sara Biere-Rafi is one of 140 healthcare workers working for C-Support, a state-funded organization that provides free information, guidance and advice to patients with post-COVID syndrome, also known as Long COVID, throughout the Netherlands.
She and her colleagues at the organization have helped more than 23.000 patients since the start of the pandemic, and while cases of COVID-19 are not what they once were, she says there is no sign of the demand to help them slowing down, with an average of 800 to 1000 Long COVID patients a month signing up for help.
Results from a study published by the University of Groningen in August 2022 suggest that 12,7% of people with COVID-19 – 1 in 8 – experience new or severely worsening symptoms 3-5 months after their original infection, highlighting the urgent need for support for the thousands of people who are dealing with a wide range of debilitating long-term symptoms.
Bridging the gap
“People are coming to us because the existing care is not sufficient,” says Dr. Biere-Rafi. “There is still limited knowledge about Long COVID among healthcare providers. Also, care is very fragmented and does not meet the needs of patients, especially those with debilitating symptoms. I am very concerned about the impact that post-COVID syndrome has and will have, not only on these people and their families, but also on society as a whole.”
People can register online for help from C-Support if they experience symptoms 3 months after their initial COVID-19 diagnosis. They will then benefit from regular phone calls from the team, which mainly consists of social workers and occupational experts, together with a medical team consisting of general practitioners, pulmonologists and an occupational physician.
“We speak to patients who are sometimes housebound or bedridden because of their symptoms and are living very isolated lives,” she explains. “They are too ill to participate in rehabilitation programs and have nowhere to go 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 half. Our data is supported by the numbers of Long COVID patients who are turning to an employee insurance company for Sickness Benefits. If this number continues to grow, we are going to be in big trouble. We need to invest in better care.
“Many of those now contacting C-Support are doing so because they are approaching the end of their statutory entitlement to sickness benefit, which is two years, and could now lose their job,” says Dr Biere-Rafi.
“At the beginning of the pandemic, the questions were more about finding some kind of recognition and information about the symptoms. Now people are looking for legal and financial advice and asking if there are treatments they haven’t tried that might help them.”
Need for specialized clinics
In addition to providing information and advice to patients, the team also provides education to healthcare professionals and participates in programs that conduct research into the condition.
The organization calls for specialized post-COVID syndrome clinics, which would integrate and centralize patient care, train health workers and facilitate large-scale research.
“This is a disease we still have so much to learn about, and some answers can be found in past experiences with post-infectious diseases,” says Dr. Biere-Rafi. “We have spoken to the government about the need for specialized clinics, more money for research, and more (inter)national cooperation. As patients desperately turn to unproven and sometimes dangerous treatments, urgent action is needed.”
In the WHO European Region, at least 2 million people are thought to have had post-COVID syndrome in the first 17 years of the pandemic alone. WHO/Europe is working with Long COVID Europe, a network of Long COVID patient associations led by current and former Long COVID patients, to ensure the condition is taken seriously by governments and health authorities through increased:
- recognition and knowledge sharing
- research and reporting
- rehabilitation
