Designing the NPPZ II program

'During my involvement from the Ministry of VWS in We see you and the Jeroen Pithuis, I saw how we can really help families of children who need palliative care. That made my heart beat faster, also because of my own experience.' Manon's son was born five weeks prematurely and was seriously ill. So she knows a little bit about what happens to a parent when you can't bring home a healthy child. 'Because of those experiences, I felt that at the Ministry of Health, Welfare and Sport (VWS) I was sometimes too far removed from practice. I decided that in my next position I want to work between the government level and executive care on initiatives that matter to seriously ill children and their families. This assignment fits in seamlessly with that.'

Fascination for the healthcare world

Her fascination for healthcare started when her mother died, when Manon was eight. 'Besides the fact that it was of course an intense event, I knew that eventually I wanted to work in healthcare. My father always said I should become a nurse, but I wanted to go in a policy direction.' Manon chose to study Policy, Management and Healthcare in Rotterdam. After a traineeship at the Ministry of Health, Welfare and Sport, she worked there in managerial positions on topics with a major social impact in all areas of healthcare, such as the reform of long-term care, the funding of hospitals and the improvement of nursing home care and care for the disabled.

"With NPPZ II we want to further improve care, by discovering and closing gaps and increasing knowledge and social awareness about pediatric palliative care."

Further improve

'Child palliative care is a largely new domain for me, which means I look at it with a fresh eye. I can see that major steps have been taken since 2013 and that a lot of knowledge has been acquired. Developments we can be proud of. With NPPZ II we want to further improve healthcare. By discovering and closing gaps and increasing knowledge and social awareness about pediatric palliative care. It's important that everyone knows what it means.' Research shows that many people still think it is about terminal care and death is imminent. Providing appropriate care and support requires early identification of the needs of children, adolescents and their families and proactive care planning that brings together curative and palliative care. In addition, greater awareness will hopefully help to make ethical dilemmas a subject of discussion. 'Parents regularly feel that they cannot say what they feel. I would like it if we could make those inconveniences disappear. This also applies to seriously ill young people. In addition to solving the bottlenecks in the transition from 18 to 18+, it is important to reflect on the question of what a meaningful life is for them, because that changes when you grow up.'

Precise results

Manon is currently reading up, talking to many people and accompanying families and healthcare professionals to understand what it is like to give and receive pediatric palliative care. 'I want to get to know the domain not only from the policy side, but from the people's perspective. Together with stakeholders, I map out what has been achieved. With a team of project leaders and employees, which I am now putting together, we then look at what exactly we are going to do and what precise results we want to achieve. I'd like to get started right away, but it's important to take some time to think about this and put it down properly. So that we can demonstrate what we're working on, whether we're doing the things we're doing right and on track so that we can hopefully be proud of what has been achieved in four years' time.'

Thinking along or contributing?

NPPZ II is open to input from healthcare professionals and experienced parents. Do you want to think along or contribute to the program? Then contact the Knowledge Centre.