Study visits to countries in Western Europe have always been powerful experiences and had a strong cultural impact on us. The visit to Norway was, however, much more than anything we have seen before.
We had the opportunity to see what equal opportunity for children with disabilities or incurable diseases. And they certainly can do better. Norway does not have any yet, a pediatric hospice palliative care. Natasha Pedersen is undoubtedly the pioneer in this field and the strongest supporter of the rights of children who need palliative care. In the last 7 years and devoted his life to children with diseases affecting their lives and their families. From the perspective of the parent who has lost a child, understands better than anyone that palliative care means taking care of your body, mind and soul of the child, and his family and that this requires a team work which can be more difficult than it looks.
What happens, however, in Norway and what makes the difference is that lobbying and advocacy and all services provided by private organizations for the benefit of children with incurable diseases, they are funded by the state. There are funds that can be accessed and used both for lobbying and advocacy (meetings, development of guidelines, policies, etc., participation in international conferences) and for direct service provision.
A team from the organization Föreningen for barnepalliasjon ( http://barnepalliasjon.no/ ) will conduct a study visit to Romania, the Association of Light in October. I’m curious to see how we do things. And they are convinced they have learned from us and that next year we can develop a project in partnership so as to improve the quality of children’s lives in both countries.
Despite cultural barriers, linguistic or social, pediatric palliative care means all over the world, caring for body, mind and soul. Caring for the child and his family.