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Marjoleine de Lange: ‘The client council draws on an enormous pool of supermotivated parents’

Her daughter got leukemia twice, so she knows very well what it's like having a child with cancer. Marjoleine de Lange, herself a doctor in a specialist breast cancer hospital, has been chairing the client council of the Princess Máxima Center for five years now. A discussion about the added value of experiences of children, adolescents and parents for better care.

Her daughter was 4 when she got sick, now she is 21 and she is still regularly on a drip. ‘When she was 16, she was going to have a stem cell transplant. I thought: Now it's all or nothing. I wanted to be there for her all the way and I quit my job as a plastic surgeon.’ The stem cell transplant was eventually cancelled. Participating in the newly established client council but currently unemployed, Marjoleine decided to help build up the Princess Máxima Center. ‘A lot had to be done. As a chair, I pretty much had a full-time volunteer job at it.’

A client council is a statutory requirement for a center such as the Máxima Center. According to Marjoleine, a client council is indispensable for continuously improving care. ‘At every hospital everyone does their utmost. And yet things go wrong. We had that with our daughter. The client council, all experts by experience, can approach the Board of Directors from an independent position to help shape policy. Among our ten members are people from all sorts of backgrounds. From financial experts to social professions. We have two doctors on board and two young adults who had cancer themselves as children.’

Direct consultation
Marjoleine is also a member of the Máxima Center biobank committee. ‘Practically all parents are willing to cooperate in research. But all the body material for studies has to come from their children. As a council member, I can keep an eye on their interests.’ Marjoleine also stresses immediately that doctors and nurses are always very careful in their relationship with the child and its parents. ‘We often think alike about what's really important. As a client council, we are in a good position to work on further improvements. We have the great added value that we can consult directly with the Board of Directors and the Supervisory Board.’

Accelerating change
By continuing to say how important certain things are, the client council can accelerate change. A seemingly simple example is the flower bead, which each child receives when they have been declared healed. Marjoleine says, ‘For parents and children, that's a hugely important ritual moment. But in practice, it varied a lot when it happened. Now clear arrangements have been made about this, so that people know what they can count on.’ Another example is the second opinion. Every family has a right to that. But because all pediatric oncology care is now in one place, you have to go abroad for it. The Máxima Center has now also formulated an unambiguous policy on this, so that parents know where they stand.

Meanwhile, the Máxima Center has been in operation for a few years. The major teething problems – because there certainly were some – are over. Parents still like to also think about the care, says Marjoleine. “If something is not going well, it's often not even a complaint, but a signal. As a client council, we have put forward the idea of appointing ombudswomen for that purpose.’ The Client Council also has the right to nominate a Supervisory Director. Marjoleine says, ‘In the Netherlands, some 30,000 people have experience as a parent of a child with cancer. A huge pool of supermotivated parents. They bring not only their parental experience, but also knowledge and expertise from a professional or personal background. Their input is a great asset to the Máxima Center’.’

More information

The client council of the Princess Máxima Center has ten members. According to the Participation (Clients of Care Institutions) Act, the council has a say in the institution's policy from the patient's perspective. The Máxima Center's Client Council is there for the parents and for all children and adolescents who are being treated (including children, adolescents and adults who have previously had childhood cancer). The client council also works closely with the Children's Advisory Board (KAR) and the Netherlands Childhood Cancer Association, and regularly consults with the nursing advisory council (VAR) and the clinical directors.

The client council has its own Facebook page. More information about the client council can be found on the website of the Máxima Center. In this article you can read more about the relationship between the client council and the Netherlands Childhood Cancer Association. Do you have suggestions, questions, tips or a complaint? Please send an email to clientenraad@prinsesmaximacentrum.nl or contact us via the Facebook page.