I’m 46 years old, the mother of two daughters, one of whom died in 2010 after 17 years with life-limiting and life-threatening conditions. It was the lack of paediatric palliative care for my own daughter that inspired me to set up the Norwegian Association for Children's Palliative Care (FFB), the only organisation in the Nordic region lobbying for the development of children's palliative care services.
This personal motivation, coupled with my training as a theologist and healthcare worker, has impelled me to push for children’s palliative care. Over the past ten years, I have completed many international courses in palliative care for children, including studying a module at master’s level in paediatric palliative medicine at Cardiff School of Medicine, Wales. I was responsible for the professional content of the first Norwegian conference on children's palliative care in 2012, and for the Nordic Congress on Paediatric Palliative Care in 2015.
I hope that my considerable experience of committee work, both nationally and internationally, will enable me to play a useful role if elected to the EAPC board. Nationally, I have taken part in two Norwegian Directorate for Health reference groups: one to develop clinical national professional guidelines for palliative care for children (completed in 2016), and the other to prepare the official report on palliative care. I was a member of the Ministry of Labour and Social Affairs expert panel, which was tasked to identify and recommend improvements in the Norwegian Labour and Welfare Administration. In May 2016, the government appointed a committee for a Norwegian Official Report (NOU) on palliative care, where I participated as a representative. This work was submitted to the Minister of Health in December 2017.
From 2011 to 2016, I was a member of the ‘International Children's Palliative Care Network – ICPCN’, which lobbies at global level for children's rights to palliative care services. I also served as a board member of the Elisabeth Kübler Ross Foundation from 2013 to 2015 and continue to be a member of the Advisory Council. In November 2015 I contributed to the development of global guidelines for children’s right to spiritual care during palliative treatment. [http://www.fondazionemaruzza.org/en/religions-of-the-world-charter-for-childrens-palliative-care-update/]
A big part of my work is raising professional and public awareness of children’s palliative care: lecturing and teaching in universities, public debates, and contributing to national and international journals. I was editor of the Nordic Journal of Paediatric Palliative Care, edited the book ‘Affected – stories about anticipatory grief’ and the Norwegian website about anticipatory grief. I also translated into Norwegian and published the book, ‘The Purple Balloon’ by Chris Raschka.
While a great deal is known about adult palliative care, particularly for those with cancer, in Norway there is not enough knowledge about how children feel who have untreatable illnesses. The knowledge, solutions and models that paediatric palliative care offers continue to be my inspiration. If elected to the board, I would hope to contribute what I’ve learned and my skills as a communicator within a broad international network, combined with my passion to support the siblings and the relatives that are affected by the life-limiting illness of a child or young person.