People with severe brain damage, paraplegia and ALS. In his previous job as a social worker in rehabilitation, Casper already saw serious situations, not infrequently involving young patients. Now, at the Máxima Neuro-Oncology Department, that experience comes in handy. “Serious diseases make no distinction. I see people from all walks of life. Parents are often still young, haven’t experienced a lot of difficulty yet, so the diagnosis of their child turns their world upside down.” For Loek, who works at Solid Tumors, the Princess Máxima Center is his first employer. During his studies he took an elective course in Loss and Mourning. “The trainer told a lot about his own loss experiences. That inspired me. I’d like to help people in extreme situations.”
Being able to say anything
The medical social work is a service for the parents/carers. Casper says, “Cancer in your child affects all aspects of life: family, relationship, work, finances, contacts with friends and family. Continuing to work full-time is sometimes difficult, but it can also change the relationship with your partner. We can help people in all those areas. Whether it’s by helping to prepare a meeting with the company doctor or suggestions on how to keep going with your family. To us you can say anything, even if it’s heavy for yourself.” Loek says, “We also check, for example, whether both parents have understood what the doctor said during a consultation. People sometimes don’t dare to keep asking questions. We can help them if necessary.”
Parents in control
The starting point is that parents retain control. Casper says, “We always try to take it from the situation people find themselves in. In the beginning this is often a kind of survival mode. Parents have to pull out all the stops to keep their families running. There may be mourning later, not just when a child dies. Neuro-oncological treatment sometimes changes a child forever. As parents, you have to come to terms with that.”
Joy and sorrow
At the Máxima you experience everything, from great joy to deep sadness. The calm that the medical social workers emanate allows parents to unwind, says Loek. For him, there is nothing like a child being declared “clean” and the family coming to thank all staff involved. Casper says, “But even if it doesn’t end well, we help where necessary. That is rewarding. The other day we had a family from Japan, who had come specially to the Máxima. Unfortunately, the child didn’t make it. But we were able to help these people very well, for example with finding a suitable funeral home and arranging that the urn could go home safely.” Both are unanimous on their future dream: that children with cancer can continue to live normal lives as much as possible. And can just be a child.
After the diagnosis, one of the Princess Máxima Center’s thirteen medical social workers contacts the parents for an introduction. Together with them they look at what guidance and support is needed. The medical social workers are part of a multidisciplinary psychosocial team and work at one of the Máxima’s three care units. The psychosocial team also includes medical psychologists and medical pedagogical staff. Soon we’ll have the ‘Medical social work’ leaflet for more information and practical tips. We will keep you posted.