A look back at two pioneers:
“We were a good duo!”
Together they were at the foundation of Q-support. Annemieke de Groot joined as managing director at the end of 2013, and Alfons Olde Loohuis, the discoverer of the Q fever epidemic, joined shortly thereafter as a medical advisor. Together they also architected a unique approach, the so-called Q-support model, which also underlies C-support. Now these pioneers are taking a step back. Annemieke will retire on August 1st, and Alfons will work for Q-support and C-support only one day a week. He combines knowledge sharing with a few patient consultations per week. "You can only speak authoritatively about post-infectious conditions if you also see patients."
Care
The Q fever landscape was barren at the end of 2013. The epidemic had already been over for six years, and the chronic consequences were virtually unknown. Annemieke: “So we started far too late, and there was a great deal of ignorance. Many people with QVS symptoms had been sent from pillar to post, lost their jobs, lost significant income, became socially isolated, and often didn't know what was wrong with them. Chronic Q fever patients were at high risk of death if they weren't treated promptly. In addition to focusing on individual patients, it was therefore urgent to raise broad and rather vocal awareness of this unknown disease and its consequences.”
Recognition and recognition
Alfons: “It was about recognition and acknowledgement. Those are prerequisites for helping people. But they didn't get them. So people in all areas of life were falling through the cracks. That's why we opted for a cross-domain model, addressing not only the physical consequences but also work, income, and psychosocial issues. A model with close collaboration between aftercare and medical advisors. That's unique in the Netherlands, where compartmentalization in healthcare, even today, unfortunately, is still rampant.”
"Moreover," Annemieke adds, "we received a research budget in the first phase. This allowed us to support research into Q fever and increase knowledge about it. We shared this knowledge with professionals so they could provide better care."
Seventh minister
Much has been accomplished, they both believe. Q fever has been prominently put on the map, an exemplary aftercare model has been developed, and after a difficult start, post-infectious conditions have gained more professional attention, especially with the advent of post-COVID. The studies among their own patients, in collaboration with Erasmus MC, have contributed significantly to this. Q and C support now operate with authority in the field. Patients rate the services highly.
Annemieke: "It would be great if we could serve as a standby function for the future, so that patient care can be resumed immediately in the event of another outbreak. Just like what happened with C-support. But for now, I believe our patients still deserve our care and support because regular healthcare isn't yet adequately equipped for it. I believe we've seen six ministers pass through the ranks now; let's hope the seventh, together with the House of Representatives, also makes sensible decisions." Alfons would like to add: "It would be good if funding didn't come exclusively from the government, but also from health insurers, for example."
Hardening
Is it all sunshine and roses then? Well, no, there's still plenty of room for improvement. Annemieke: "I find the hardening of this already complex field serious. Of course, everyone wants and has the right to make their voices heard. But preferably with respect for each other's roles. And preferably with the patient's best interests at heart: what's the benefit for that hardworking man or woman who's running out of steam and keeps working because they can't afford a loss of income? They don't care about political battles or bickering at the negotiating table.
Alfons agrees: “The agenda is increasingly dictated by self-interest. Q&A and C support are built on modesty. If you lose that modesty, things quickly go wrong. And you see that happening all around us. Yet, we're condemned to each other. Let's work together and do what's best for the patient.”
“We were a good duo!”
They felt the collaboration was particularly enjoyable. Annemieke: "We were a good duo. One was a bit more creative, the other more focused on the content. Always searching for clues together." Alfons: "And we talked so much on our car rides through the Netherlands, discussing Q fever or post-COVID. That was very productive."
