In recent years, we have worked hard to install and maintain a Children's Comfort Team (KCT) in every academic children's hospital and in the Princess Máxima Center for Pediatric Oncology. These multidisciplinary teams, specialized in palliative and palliative terminal care for children and their families, form the link between care in the hospital and care at home. They guide families and support them in organizing and coordinating care. Each KCT has its own character, but they all have the same mission: helping families with care in the hospital and a warm transition to the home situation.

For a long time now, the Knowledge Center and the KCTs have been campaigning for structural funding. Since last January, the many activities of the KCTs can be made transparent for paediatrics via their own dbc structure (DOT tree) and linked to funding. However, this so-called DOT tree is not conclusive for all costs. The nurse's tasks mainly consist of case management tasks and not of nursing activities at the bedside. The regular funding does not provide enough for this. To date, the KCTs are therefore still partly paid from the hospital's own resources, donations and subsidies. But there is good news: this has recently changed in Groningen. In the past year, a sustainable solution was found in the Beatrix Children's Hospital – thanks to the preferred health insurers in the region – for the financing of the KCT in the UMCG. This means that important care for children and families will continue to be available in the future.

Reimbursement of the nursing information

Because the pediatric palliative teams provide care in both the hospital and at home, there are different financial structures. The insurers have opted to pay separately for the nurse formation of the KCT.

Willemien de Weerd, a pediatrician in Groningen, is pleased that insurers have recognized the value of the multidisciplinary and transcending nature of pediatric palliative care. She says: “We succeeded in explaining to insurers how multidisciplinary, complex and valuable our care is. I think they have understood how diffuse pediatric palliative care is. The work of our team cannot be financed with one diagnosis-treatment combination of the general paediatrician, pediatric cardiologist or pediatric oncologist. The care also takes place in different places. It has become clear to them how many small pieces our work consists of. Our care is so transcendent that we wanted to get extra money to finance the nurses, who are the pivot of the team. And it worked. It is great that the regional insurers realize this.”

Care has thus been made structural

The fact that the insurers have made budget available to finance the nurses in their role as nursing case managers - an expertise as described in the expertise profile nursing case manager for pediatric palliative care - emphasizes the importance of their commitment. “It is an appreciation for the role of the nurses,” says Willemien. It also ensures that pediatric palliative care can be continued in the Beatrix Children's Hospital. It is no longer project-based care, for which the hospital has to make a new choice every year. “The question of whether the hospital will still be willing to pay for the pediatric palliative team next year is no longer an issue in Groningen. Thanks to the extra money from the insurers, the care has been made structural.”

Investing in sustainable funding

Funding the Kinder Comfort Team is a sustainable choice. “Due to the work of the pediatric palliative team, some expensive drug treatments, for example, are not done because it has previously been shown in discussions that a treatment does not add value and is not in the best interest of the child. We have time to talk about these kinds of topics. In the long term, this could mean something for the choices of children and parents. There are also scientific studies that prove this. By focusing on financing children's palliative teams, care ultimately becomes more sustainable,” says Willemien. We also know from research that the use of the KCTs reduces hospital visits (such as the A&E).

Highlighting the importance of pediatric palliative care

The message has got across in Groningen, and hopefully the KCTs in other regions can achieve the same result with their preferred health insurer(s). Willemien advises: “It is important to highlight the value of this care to colleagues who are close to the insurers' fire. Talk to administrators and care buyers. And make sure they can make the importance of the KCT visible.” Willemien hopes that the example from the Beatrix Children's Hospital can be a boost for other KCTs, "but the first step is that pediatric palliative care is considered really important in your own hospital."

Willemien wants to motivate other KCTs to continue with what they are doing and to focus on sustainable funding: “Be honest with the insurer and remember: perseverance wins. Keep doing what you believe in. If children and parents are happy, we are doing well. Colleagues from the region, such as paediatricians in the periphery, general practitioners and home care nurses are also happy with our help. Hopefully insurers will see that. Moreover, the care of the KCT meets all the themes that are considered important in the present time. Think of the right care in the right place, network medicine and value-driven care.”

Willemien continues: “When funds are released for technology and other forms of progress, it is undeniable that more and more palliative care will be needed. Children are living longer with complex, life-shortening or life-threatening conditions. The insurers may have felt that too: if we make technological progress possible, then this form of care will become much more important and therefore investments must also be made in it.”

Seeing hard work pay off

They are happy in Groningen. It gives confidence that insurers understand the reality and reward hard work. Willemien concludes: “Insurers have to make choices, of course, but it is nice to see that care that we consider so important is recognized by them. This way we can continue to provide this valuable care to families”.