Photo: Director Meggi Schuiling-Otten with the well deserved award
At a six country conference in March 2019, organised by the “Kinderpalliativzentrum Datteln” in Germany, the “Kenniscentrum Kinderpalliatieve Zorg” (Center of Expertise in Children’s Palliative Care) in The Netherlands were the worthy recipients of an award for successfully realising their vision of developing a national structure for integrated children’s pallaitive care throughout the country. The award was presented to the organisation’s Director, Meggi Schuiling-Otten.
Background to the development of children’s palliative care in The Netherlands
In The Netherlands around 5,000 to 7,000 children and families need palliative care every year. This includes diagnoses of cancer (23%), and neonatology, neurological and metabolic diseases (77%). Around 1,100 children (0-20 years) die every year from the effects of an illness or life-limiting/life-threatening condition.
The diagnoses are mostly very child-specific and the diseases very rare, complex, chronic and progressive. The average age of children needing palliative care is under 9 years old. There are many symptoms and sometimes these are very complex, requiring special technology and highly specialized care. There is also a high life expectancy as children with life-limiting and life-threatening illnesses are living longer and longer with more complex conditions and symptoms. Yet policies and processes in The Netherlands were still based on principles of palliative care for adults.
From “forgotten child” to a place on the political agenda
Back in 2013 there were a number of children’s hospices and home based care for children in The Netherlands. There was just one children’s palliative care team and guidelines were in the development phase. There was no national health care structure, no funding, no local networks and no formalised training in children’s palliative care.
From this background the “Kenniscentrum Kinderpalliatieve Zorg” in The Netherlands developed their vision, which is: “Good quality children’s palliative care available in all locations for all children and their families for as long as it is needed.”
Within just 5 years, a national structure for integrated children’s palliative care in The Netherlands has been established. Children’s palliative care is now available in all 7 regions in the country. Seven multidisciplinary Children Comfort Teams (Kinder Comfort Teams) have been established in the academic children’s hospitals and there are also seven regional Networks for Integrated Child Care (NIK) for all families with a seriously ill child with care provided from the time of diagnosis.
A general format for and individual care plan is available and the Kenniscentrum Kinderpalliatieve Zorg is available to provide advice and information.
Several training opportunities for health professionals and volunteers have also been developed and one of the most important aspects for sustainable integration of children’s palliative care – appropriate policy and funding – is presently under development.
On receiving the award, Meggi Schuiling-Otten, Director of Kenniscentrum Kinderpalliative Zorg, said, “The Dutch success is very much based on strong collaboration and networking and on using real experiences of children and families as a basis for systematic and sustainable improvement of integrated child-care.”
The determination and perseverance of all the caregivers and parents involved in this process have resulted in the realisation of a successful structure for integrated children’s palliative care. For the future we have a dream to customize children’s palliative care for all families in The Netherlands by systematically translating real patient stories into innovations.