Since the official start on October 1, 2020, almost 8000 Long COVID patients have called on aftercare organization C-support for advice and support. 'An impressive milestone', says director Annemieke de Groot. 'And we suspect that there will be even more.'
C-support is a sister organization of Q-support, the foundation that is active in the aftercare for Q fever patients. Just like corona, a zoonosis (transmissible from animal to human) that can lead to many long-term, so-called post-infectious complaints. C-support works according to the same principles and offers support in all areas of life that the disease affects: physical, mental, social, work and income. (Care) professionals can also call on the organizations for advice or cooperation. There is also a lot of attention for education and research. The Ministry of Health, Welfare and Sport is the client.
harrowing
'We speak of Long COVID when there are still complaints three months after the infection', says De Groot. 'The registrations follow the waves of infections that have occurred in the Netherlands. In order to serve all these patients well, we work with aftercare advisors and medical advisors, now around 75, from locations throughout the country. We still see many people from the first wave. More than a year after the infection, they not only still suffer from physical complaints such as severe fatigue, concentration problems and shortness of breath, but often also have many issues in the area of work and income. That is why we also have labor experts, lawyers and financial advisors to guide these people or to support them in discussions with authorities. It is distressing and very stressful if, in addition to your physical complaints, you also have to deal with a significant drop in income or even complete loss of income, as many self-employed people experience. That is not very conducive to recovery. Unfortunately, we cannot make people better, but we can show them the way and connect parties to provide appropriate support.'
Still much unknown
De Groot believes that C-support shows that lessons have been learned from the Q fever epidemic. 'Q-support was founded in 2013, six years after the outbreak. By then, a lot of irreversible suffering had already occurred; people had lost their jobs, entrepreneurs had gone bankrupt and there was a lot of conflict with benefit agencies. We can now hopefully prevent a large part of that. At the time, it had everything to do with the unfamiliarity of the disease. Hardly anyone knew that you could still suffer so much from Q fever years after being infected. We know better now. But that does not alter the fact that much is still unknown about the long-term consequences of COVID-19. Why does one person remain ill for a long time and another not? What treatment is possible? That is why we still hold research and education in high regard.'
Difficult to process
The patient group that called on C-support is 75% female, between 30 and 60 years old and (digitally) literate. De Groot: 'That is why we think we are still missing a significant proportion of patients. Young people, the elderly, people with low literacy, people with a non-Western background. That is still a major challenge for us. Research shows that women are more often affected by Long COVID, so that proportion is less strange. What is also remarkable is that almost no one has been in hospital as a result of COVID-19. Everyone has been sick at home, but does not recover. The complaints persist and often have an erratic course. And are therefore still so severe months or more than a year later that normal functioning is out of the question. While they were often very healthy and active people before the infection. For many Long COVID patients, that is difficult to process.'
