Over the past ten years, the house of Patrick and Marieke Deelen from Assen has slowly become a small hospital. There is a wheelchair and an exercise bike in the living room. Cupboards are overflowing with medical supplies and medicines are prepared in the kitchen.
All these medical supplies are needed for their 10-year-old son John, who was born with a serious muscle disease. Shortly after his birth, the little boy developed complications and had to be resuscitated, which damaged his trachea. Since then he has had a plastic tube in his windpipe, which makes breathing easier.
“I’m used to it now,” John laughs.
The 10-year-old boy shows his bedroom. There is a ventilator and a saturation meter. “It is connected to it at night. We check several times a night whether everything is still working properly. Sometimes the tube comes off, which is life-threatening,” father Patrick Deelen explains. “That alertness, the broken nights, the constant care: that breaks us down.”
Patrick and Marieke need to catch their breath, because the care is heavy and intensive. That is why John has been going to a medical guest house in Wezep every other weekend for ten years. This falls under the care organization ExpertCare.
In such a house, chronically seriously ill children can temporarily live, play or stay. “When John is there, Marieke and I have some time for ourselves,” says father Patrick. “Then we can sleep through two nights without all kinds of alarm bells.”
The house falls under the care organization ExpertCare. “But at the end of January we were suddenly told that care was going to stop and that the guest house would close its doors on March 31.” The three other branches in Waalre, Rijswijk and Vleuten will also close.
The healthcare organization says that ‘This difficult decision was prompted by four factors: structurally inadequate financing from the healthcare system, increasing staff shortages, the need for large investments in the buildings and the increased demand for specialized child care at home.
It hits home for the Deelen family. “It is difficult to understand that this is being announced at such short notice. We have another problem, another thing to worry about. That is already causing damage to us and other families.”
ExpertCare emphasizes that if it appears that no alternative is available for one or more children on March 31, the location will remain open.
But Marieke and Patrick have no confidence in that. “We were told at an information evening that the location will remain open as long as there are staff. But the staff now know that the guest house is going to close, so they will look for other work. We are very afraid that at some point the healthcare organization will say ‘it’s done’.”
