My story

When our child became seriously ill, life changed from one day to the next. The focus was naturally on the care and treatment, but fairly quickly we discovered that there was another battle — understanding what rights we had, what benefits existed and how to navigate contact with various government agencies.

Along the way, I came to realise that the regulatory framework surrounding seriously ill children is considerably more complex than many people think. There are laws, guiding court rulings, legal position statements (rättsliga ställningstaganden) and various forms of financial support — but the information is scattered and often difficult to find. Many families also receive different answers depending on who they speak to.

I therefore began reading legislation, court rulings and authority decisions myself, to understand what rights families actually have. The more I learned, the more obvious it became that there is a great need for consolidated and accessible information.

The goal is to create a place where families, healthcare professionals and others can easily find guidance, important documents, practical advice and tools that make it easier to navigate a difficult and often complex system.

As part of this work, Bedömningshjälpen is also being developed — a digital tool that will help families identify what support and benefits may be available based on their situation. The tool is still under development and is continuously being improved.

My hope is that no family should have to spend precious time searching for information or struggling to understand their rights when all their energy is really needed to care for their child.

If Allvarligt Sjuka Barn can make that journey a little easier for the next family, then the initiative has already made a difference.