01/02/2022
The Standing Committee for Health, Welfare and Sport recently organised a round table discussion on Long COVID. In addition to researchers, the Longfonds, Long Covid Nederland and C-support were also invited. In preparation, a Position Paper was drawn up requested with a presentation of their own organization. During the meeting, the speakers could indicate which issues they now consider urgent for the problems of Long COVID patients.
Annemieke de Groot, director of C-support, asked for attention for the following, based on the more than 10.000 patients who have now called on C-support:
- First of all the need for cooperation. Prevent patients from bouncing back and forth between all kinds of care providers, without consulting each other. Put the patient first and not the system. The possible extra costs for coordination will certainly be earned back. In fact, they yield a lot. In terms of recovery, in terms of an overloaded care system, but also in the long term. Otherwise, people may continue to rely on health care and the social safety net for many years.
- Following our call for cooperation, there is also the call for regie. We see good initiatives emerging. Care pathways and guidelines are being drawn up. Further developing and applying this requires more national direction. To learn, to achieve more uniformity and above all clarity for the patient.
- We ask attention for the psychological distress in people. The ever-growing waiting lists that people are faced with and are therefore deprived of good help justify this appeal.
- We strongly urge attention to those who will be confronted with the term of 2 years of illness this year, during which the WIA assessment comes their way. As C-support, we see the concerns and unrest increasing. We estimate that of the people we know, between 500 and 1000 patients are heading for the WIA. And that is just the tip of the iceberg, because there is a large group, the hard-to-reach target groups, that we do not have a good enough picture of. A large group of people is on the verge of dropping out and getting a huge poverty trap, especially people with a lower income. We are asking for a temporary respite because it is a new disease of which we do not know the long-term consequences.
- As C-support we ask you to see the patient as a human being, acknowledge the complaints, get a well-trained professional and find the cause. Research, a lot of research is needed. Look for cooperation within and outside the Netherlands. Look for possibilities, let patients think along and help find solutions.
- Finally: the pandemic preparedness has been put high on the agenda by this cabinet. That is also necessary. Due to the knowledge from Q fever and now from COVID-19, we know that new infectious diseases are lurking. In the 'pandemic preparedness', do not focus only on IC capacity, on vaccinations, testing and measures. But learn from the experiences of now and know that there are long-term consequences for a substantial group that require aftercare.
