Hester Rippen is director of the Stichting Kind en Ziekenhuis , a patient organization for children and families in medical care. It coordinates and facilitates a large part of all activities related to the Medical Child Care Cooperation (MKS, formerly the Medical Child Care System) on behalf of the MKS cooperation partners. Hester is also involved in the national research project on the redevelopment of the Individual Care Plan in order to safeguard the perspective of the child and family and to act as an intermediary between the Individual Care Plan and MKS. In this article, Hester explains what the Individual Care Plan and MKS have to do with each other.

Working together for the best care for child and family

MKS helps healthcare professionals to work well together with the child, parents and each other. MKS offers knowledge, tools and support for the indication, organisation, implementation and evaluation of pediatric nursing care outside the hospital. MKS also helps to determine the follow-up process if this care is no longer necessary. MKS is for children up to the age of 18 with a need for care in their own environment, including children with a palliative diagnosis. Integral network care should be created by applying MKS, says Hester: “That is policy language, but by that we mean that a child not only receives care at home, but often also at school, in a nursing day care center or in the hospital. At home, the parents or the child can provide all or part of the care themselves, where necessary in collaboration with pediatric nurses. The municipality can also be involved in the care, for example by providing aids or transport.”

“You can already hear it: many parties are involved. The network of care providers around the child must be well organized and coordinated, so that the child and family receive flexible care based on their wishes and needs. This can only be achieved by making agreements with each other about how you can do this together as a care network. MKS is there to organize that. We look at all areas of children's life: medical, safety, social, and development. We also pay attention to the whole family, not only the child itself, but also the parents, brothers and sisters. The whole family should be in balance and life should go on as much as possible.”

The four phases of the MKS

In four phases (reference tree, help needs scan, care plan and decision tree) and based on the child life domains, you take the steps necessary for good cooperation between child and family, (care) professionals, and all those involved. In the first phase (reference tree) you will look at which laws and regulations the child falls under and what this means for the reimbursement of the treatments. In the second phase (help needs scan) you will map out the help questions and needs of the child and family. In the third phase (care plan) you record what agreements have been made about who is responsible for what. The provision of care and progress is described in this care plan. The care and the care plan ends in the fourth phase (decision tree).

The Individual Care Plan as part of the MKS

In the third phase, the Individual Care Plan comes into play, says Hester: “Every child needs a care plan. The Individual Care Plan is for a specific group of children with a palliative diagnosis. For this group you have to work out much more broadly and in depth what the wishes and needs are. The Individual Care Plan is actually a deepening of the regular care plan in which you agree even more matters with each other, with extra focus on the specific wishes and needs. For example, you also record what you will do if situation A or B arises. The Individual Care Plan contains parts that you do not need for every child, but the Individual Care Plan is based on the same vision and working method as the care plan. Every child must receive a care plan, so every child with a palliative diagnosis must receive the comprehensive version: the Individual Care Plan.”

The role of security

Because the Individual Care Plan is inextricably linked to the MKS, the Individual Care Plan also pays attention to the child safety domain. Hester explains what security means in this context: “There are actually two ways of looking at security. On the one hand, care must be carried out safely in one's own environment. You need the necessary equipment, medicines need to be stored properly, and family members need to be skilled at performing certain tasks on their own. On the other hand, you have to keep an eye on whether everyone can still handle the situation. When parents are completely 'burned out' and exhausted, unsafe situations can arise, because they may miss some things or can no longer get things done. For the sake of the child, we must keep an eye on the parents. The balance must be right, but in the context of pediatric palliative care, the family can become unbalanced because it is a tough situation for both child and family.”

To start early

In the context of the IZP project, new process agreements have been drawn up to ensure that the Individual Care Plan is started earlier and not only in the last phase of life. Hester is positive about this: “Thanks to these new process agreements, an Individual Care Plan can be started sooner. And the sooner you start doing that, the better. Many people are involved in caring for a seriously ill child. By starting up an Individual Care Plan, the child and family gain the best possible insight into the care, wishes and needs. Starting this early also ensures that you can cut up and divide the Individual Care Plan a bit. You don't have to fill it in all at once.”

Helpful for parents

“A document like the Individual Care Plan is also helpful for parents because they can see what all the components are and what discussions need to be held about,” says Hester. “You make it easier to discuss and you can better coordinate the conversations with each other. Discussing certain parts, for example about what to do if the worst happens, you have to be ready for that. But you can't wait too long either. It could also be that it just isn't happening right now. As a healthcare professional, you can use your expertise and with the right tools to advise and help the child and the family in addressing difficult topics, but they are central to the process.”

An Individual Care Plan ensures that the care for the child really improves”

According to Hester, experience shows that an Individual Care Plan yields a lot: “It may seem like extra work in advance, but it gives the child and family and all the people around them the necessary information to support the child and family in the best way. An Individual Care Plan ensures that the care for the child really improves. And that is what we all want, the best care for children and families.”

The Individual Care Plan can therefore not be viewed separately from the MKS: “Our most important message is and remains: the successful application of the Individual Care Plan together with all care providers involved around the child and family is entirely in accordance with the MKS working method. I therefore see the Individual Care Plan as part of the MKS. It is a deepening for children with a palliative diagnosis. An enrichment."