A powerful letter from a parent to the Minister

In 2018, Neeltje Staats wrote a personal letter to Minister De Jonge, after her daughter Bel had died four months ago. The Personal Budget (pgb) served as her income in the years before. The PGB stopped immediately on the day of death. That has to change, says Neeltje.

"The PGB really creates a win-win situation for sick children and their families. If our daughter Bel had received care at an institution 24 hours a day, 7 days a week, it would have cost the government much more money than if we did that in combination with nursing care at home. And that worked out well, because we really wanted to do it. We, like most parents, just really wanted to take care of our child ".

Major financial consequences

However, the financial consequences of having a seriously ill child are considerable and the choice for a personal budget has consequences. Careers are abandoned, a mortgage is not granted, no pension is accrued and the PGB stops immediately upon the death of a child. This is evident from the story of Neeltje Staats as well as from the 'Reporting patient journeys for children's palliative care'. In a letter to the Minister, Neeltje Staats pleads for a scheme to offer families a safety net, for example by giving parents the right to unemployment benefits for a period of 6 months after the death of their child.

The whole system needs to improve

"I did not become a self-employed care worker by choice. No, that was because my terminally ill child would otherwise not be able to live at home. And I did not “resign” of my own free will, but my child died. paid me years to take care of my child (because it costs the government much less money then) and now you say it wasn't work? I don't understand this reasoning. Any other job would have left me with a few I could report sick for weeks or even months and then I could go back to a routine that is sometimes very pleasant. Now I have to reinvent myself after years of not participating in the regular labor market. Moreover, I am recovering from years of extreme trauma and stress. In the meantime, as parents within our family, with two boys aged eight and ten, we must serve as an example of how to deal with this grief and loss. Again, I am therefore concerned with the whole system."

Safety net badly needed

"I, and many other parents with me, think that there should be a regulation. Not something where, as I do now, you have to invest a lot of energy and time and actually beg for money. No, there should be a safety net for the first six months (at least). If necessary, an exception or a fund because the group is small. The panic we had about money and the near future around the death of our dear daughter could have been prevented and I don't wish that on any parent. It's all painful enough already.

So I ask you: can't parents like me get unemployment benefits? Does the Ministry have other good ideas on how to solve this nasty problem for parents? Or… don't you see the problem?"

Think about a solution

"I like to think along about the solution because I know from my own experience that a scheme like the one I outline is better for everyone. If parents are given time to grieve and recover, they will return to the labor market better. Because, I think we agree on that: that it is very important that this group of parents (and I fear especially mothers) return to the labor market and reconnect with the society they have lived outside for a while.

I also want to go back to work, I want to be part of the "normal" world again."

Government demands the impossible

"The parents for whom I am also writing this letter will not write to you. Also, if you sometimes meet them on working visits at, for example, children's hospice Binnenveld, they will not bring this up. They are busy getting through the day. They are too tired They are sitting, as you are reading this letter, in an emergency room, or talking to the umpteenth doctor, or sleeping in a separate room in the children's ward because they literally spend the whole night in their crying child's room. They don't want to think about their child dying at all, they are preoccupied with the now and cannot plan beyond the death of their child.

Planning over your child's death... I hope you read this sentence carefully, because that's what the government asks of us. You probably, fortunately, can't imagine just how terrible that is.

But I can't imagine that there's nothing to think about here."

Neeltje Staats

September 26, 2018 in Amsterdam