“Have a good one!”
Annemieke de Groot looks back on her career as a director of Q-support and later also C-support. In her stories, one thing is always central: her great involvement with patients. What touched her most? Without a doubt: “The personal contact.”
On August 1, 2025, Annemieke will retire after almost twelve years of dedication to people with long-term complaints after Q fever and later also after corona and a corona vaccination. When she took office in 2013, she first spoke to about fifty Q fever patients. Their harrowing stories about health complaints, lack of recognition and recognition and problems with work and income formed the starting point for her approach.
The Q-support model
These discussions lead to the now well-known Q-support model that also forms the basis of C-support: integrated aftercare with aftercare advisors as permanent contacts, medical advisors and occupational experts and legal support. And in addition, a lot of attention for knowledge sharing among professionals. Moreover, Q-support had a research budget in that first phase. Annemieke: “That resulted in sixteen great studies. We even won a prize for the way in which we involved patients in the assessment of those studies at the time. But I would have preferred to see a cure for this nasty disease. Because unfortunately, we still cannot cure people with a post-infectious condition.”
Awareness
Anyone who started talking about Q fever at that time was met with a lot of incomprehension. Annemieke: "It was dismissed as a Brabant disease that was long gone. So we put a lot of energy into making the long-term consequences known. With the Q tour we went to all the infection centers in the Netherlands to provide information. And during the first 'Pampering day for Q fever patients' in 2015 we shouted Q fever patient day out. With that we successfully, and to this day, drew attention to Q fever and its major consequences for the patient. But the real game changer came in 2016.”
Measuring is knowing
Annemieke gave substance to her motto 'Measuring is knowing'. During a conference for professionals in the provincial government building in Brabant, she announced the figures based on measurements among the then more than 600 of the ultimately 1500 registered patients. "That was the first time we were able to show with figures what the long-term consequences were for patients in all areas of life. It was no longer a matter of believing people, but taking note of the facts. That made a big difference and put Q fever on the map. We later followed that up together with Erasmus MC with a long-term study into the long-term consequences of Q fever. Immediately after the start of C-support, we also did that for post-COVID. Especially for post-COVID, we had an extensive patient base in a very short time. With that, we wanted to map out from the outset what consequences this condition has for the patients. That contributed a lot to the first insights into post-COVID. After all, it is also an unknown disease."
Cheeky
The finiteness of Q-support is a recurring theme. Annemieke: “That is typical of a project organization. The first phase ended in 2018. Shortly before that, at our insistence, the assignment had been extended by three years, but on the condition that we would transfer the patients to the municipalities. That turned out to be an impossible task for various reasons. When we were so bold as to return that assignment to the minister in 2019, we were allowed to remain the point of contact for Q fever patients. The minister did ask us for a plan on what we could do in the event of a next outbreak. The ink on that plan had barely dried when the corona pandemic broke out. We received the request for a new organization almost immediately. That meant that we could switch quickly.”
pressure cooker
“C-support started in the fall of 2020. The ministry thought of fifteen hundred patients in total, but on the first day six hundred already registered. And that number quickly increased to almost 35.000. It was a tour de force to serve these people quickly and well. We had to be very inventive in finding new colleagues, organizing introduction programs and meeting locations, setting up good registration systems and of course there were all kinds of restrictions due to corona. It was a pressure cooker. But unlike Q fever - which was a silent epidemic that was discovered by chance - corona got all the attention. Guidelines were issued very quickly, paramedical recovery care was organized, a post-COVID network was set up and all kinds of research was started worldwide. And even then you see that the lack of knowledge among professionals regularly takes its toll.”
Future
Annemieke is reserved about the future. She does advocate a knowledge center for post-infectious diseases with a watchdog function for new outbreaks. And for fewer “bulkheads” in healthcare. The Q-support model proved how important integral, patient-oriented support is, something that is still lacking in the regular system.
Finally, Annemieke looks ahead to her retirement: “I am quitting my working life and a very busy job. First, I am going to make the journey of discovery to find out who I am without work. I am looking forward to it, but also dreading it. It was a wonderful and special time in a great team that does excellent work. I would like to sincerely thank everyone who is professionally committed to our target groups, also outside our organization, and 'Keep up the good work!' I thank all patients for the trust they have placed in us. All the best to you!”
