What qualifies you to work in children’s palliative care?
My main education is in theology and health but I have completed many courses over the past four years, including courses in adult palliative care within Norway. Last year I began a Masters in paediatric palliative by correspondence. I have also completed several e-learning courses. I have done a lot of self-study and am now very familiar with English since we don’t have any literature on children’s palliative care in Norwegian. I’m also fortunate to have many wonderful international colleagues from many disciplines who are always willing to give me good advice and share their knowledge and ICPCN and Together for Short Lives have also proved to be a valuable source of information. But the most important qualification I have is from 17 years of practical experience looking after my daughter without access to palliative care services for her or for our family in my country. She passed away in February 2010. This experience is the most valuable one and contributes to me being able to close the gap between theory and practice. When I find myself getting too theoretical, I always have a solid reference for what happens in practice.
What drew you to work in this field?
This is not a simple question! There are many reasons. Firstly the lack of palliative care for the children in Norway, but it was also a personal and intellectual calling. Children’s palliative care provides the answers to the challenges faced as the medical interventions increase. Palliative care, as I have learned, offers the best care and solutions for children with life limiting and life threatening conditions. The holistic approach and the innovative thinking is another reason and that it addresses the actual needs and suffering of the children. It also provides healthcare professionals with the tools and skills they need to carry out a very difficult kind of care. In the light of medical advances we need to rethink our ways of providing care. In children’s palliative care the child is always in focus and this is very important. Martin Luther, the German monk and the reformer had his Sola scriptura and I have children’s palliative care!
How long have you worked in the field?
For the past 4 years but if you include the 17 years I cared for my daughter without access to any children’s palliative care services, it is 21 years.
What part of your work do you enjoy the most?
It is difficult work but so meaningful. The best part are the conversations with children and families who are facing life-threatening and life limiting diagnoses. I truly believe that the children are our greatest teachers and I am learning new things every day. Even taking into account my work as a priest, I have never felt more joy and satisfaction as I do now, working in children’s palliative care.
What is the present status of palliative care for children in Norway?
Our organisation has done a lot of advocacy and there has been much progress as a result. Four years ago children’s palliative care was not on anyone’s agenda but now we have drawn the attention it deserves. Working closely with politicians and government has led to the drawing up of national guidelines for children’s palliative care. These guidelines will also describe what we need to do to get the best services for children and what we need to do for setting up the systems for both education and services.
We have recently launch the Norwegian translation of ”The Purple Balloon’, a book that helps children to talk about dying, and we are working with an official publisher to begin translating the Oxford Textbook of Paediatric Palliative Care into Norwegian in January. We have also been invited to give a statement on education on children’s palliative care for a white paper to the Minister of Education and Research in October.
Is there any training available?
At present our organisation is contributing to some training and courses in children’s palliative care and we are working closely with the government and other professional healthcare organisation and institutions to make formal education and training a reality in Norway.
Can children with palliative care needs access services in Norway?
Norway at present lacks any system or suitable environment for the provision of this type of specialised care. Children do receive care but it is provided in ‘bits and pieces’ and cannot yet be defined as palliative care. Children and their families are still battling but we are slowly getting there. The Norwegian Directorate of Health, responsible for the drawing up of the guidelines, a work that I’m also involved in, will describe the need and what needs to done in the future. The fact that the government has acknowledged the lack of children’s palliative care services is a huge step in the right direction. The significant increase in attention to children’s palliative care has lead to growing support for our work.
What would you say is your organisation’s greatest achievement to date?
There are so many achievements! The growing awareness of children’s palliative care and what it has to offer; the creation of national guidelines and the public attention this has gained as well as the collaboration we enjoy with associations for different health care professionals.
What is your greatest need at present and what are the major challenges you face?
First of all, we need funding for our work and a strong political stand on children’s palliative care. The challenges are always there. Since palliative care for children is so different in many ways from adult palliative care we have to always make it clear that it is so much more than just end-of-life care and that it can offer the best quality care. Adult palliative care has a strong focus on cancer in Norway but children have a far wider range of diagnoses and of course there are all the myths around palliative care. There is an election this year on 9 September and we may have a new Parliament in Norway. Election results and who is returned to parliament will of course play a role in the future of children’s palliative care.
What does the future hold for your organisation and the work that you are doing?
I am optimistic – we are shooting for the stars! We believe that children and families will have good palliative care services and trained personnel within a 5-7 year period. Our organisation is working on many levels in the academic, political and the healthcare sector. I hope that in the future children and families will have seamless services given by healthcare professionals trained in children’s palliative care in hospitals and at home. We also have a dream to build a children’s hospice. It is hard work and we continue to learn valuable lessons from the work that takes place in other countries.
You can find out more about the work of Natasha’s organisation at http://www.barnepalliasjon.no/ and watch a YouTube video on the launch of the book ‘Den lilla ballongen’ at: http://www.nrk.no/sorlandet/gir-ut-bok-for-a-hjelpe-andre-1.11224333