– We want time limits in the legislation. We see that cases involving seriously ill children can have a processing time of half a year to two years. Sometimes it’s the whole life of the sick child, says Nina Bakkefjord. She is a social worker and works for Løvemammaeneen’s help service. Løvemammaene is an organization that helps families with seriously ill children, children with functional impairments and children whose lifespans are shortened. Among other things, they help with applications, appeals and help in meetings. In addition, they provide legal assistance. – We notice that more and more people are making contact, says Bakkefjord. Last year, the organization helped 400 families with applications and complaints. So far this year, over 450 have received help. news has told the story of two parents with cancer Cerine (4) and heart disease Lotte (2). The parents thought they were not getting the help they were entitled to, and complained to the State Administrator. Recently, the State Administrator concluded that the family of heart patient Lotte had not received enough relief from the municipality. – Lack of legal certainty When families do not receive the health care and relief they believe they are entitled to from the municipality, they can complain to the State Administrator. The case of Cerine, who has cancer, is still with the State Administrator in Rogaland. The state administrator in Rogaland informs news that they have a three-month processing time in such cases. But according to Bakkefjord in Løvemammaene, this type of case can often take much longer. According to the legislation, the municipality has a duty to follow up decisions from the State Administrator. – But it will still not be done. What happens when the state administrator revokes the municipality’s decision is that the municipality must make a new assessment. But the municipalities do not always consider what the State Administrator has decided, says Bakkefjord. If the parents disagree with the municipality’s decision, they must first complain to the municipality again. They can then complain to the State Administrator. – There will be eternal round dances for the families. In the meantime, they stand with indefensible services for months and up to years, says Bakkefjord. Therefore, she believes that these families are not protected by a good enough piece of legislation. – They have no legal certainty, says Bakkefjord. County doctor in Rogaland, Andres Neset. Photo: Josef Benoni Ness Tveit / news The State Administrator in Rogaland expects municipalities to comply with their decisions. – If we learn that municipalities do not comply with our decisions, we can open a supervisory case, says county doctor Andres Neset. Karmøy municipality informs news that the municipality will follow the State Administrator’s conclusion. Mortality halved In 2022, 308 children aged 0–14 died in Norway, according to figures from Statistics Norway. 20 years ago, the number was 605. In other words, the mortality rate among children and young people has almost halved in the period. Today, around 8,000 children live with a serious illness in Norway. – It is becoming clearer and clearer that many municipalities are not equipped for medical science to make great progress. More and more children who previously did not survive are being saved. Many of these are saved for unlivable lives, says Bakkefjord. Nina Bakkefjord in the organization Løvemammaene. Photo: Waqar Dar As a result, several seriously ill children come home to live with their families. And this is where the municipalities largely fail, according to Nina Bakkefjord. – This failure brutally and seriously affects all levels of family life with ruined health for parents and lost childhood for siblings. Parents have had to take on so much responsibility that it overshadows absolutely everything else, she says. Necessary help – no change in the law The Ministry of Health and Care Services believes that legal protection is fundamental to the welfare state. State Secretary Ellen Rønning-Arnesen says it is important that family members receive the necessary information, advice and guidance. – It is a fundamental task for the health and care services to ensure this. Good dialogue between those who need help and the municipality is absolutely decisive in my eyes, says Rønning-Arnesen. She believes that all family members should know about rights and access to complaints. State Secretary in the Ministry of Health Ellen Rønning-Arnesen (Ap). Photo: Olav Døvik – If someone feels that their right to the necessary help is not fulfilled, they can complain to the State Administrator. The access to complaints is important, and should be used, the state secretary believes. – The treatment time is too long, Løvemammaene believes. What will they do with this? – Time is critical when you live with an illness, and I have great understanding that the Løvemammaene are pointing to this. It is based on the Public Administration Act that all cases must be dealt with as quickly as possible, says Rønning-Arnesen. She thinks it is important because it is about the lives of children and young people and their families. But still says that some health matters take a long time. – They are professionally difficult doctors, and the goal is for them to be treated properly and thoroughly. Everyone can get better, including us. For us, this is now mostly about compliance with the legislation, not about changing the current law, says Rønning-Arnesen.
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Several children survive serious illness. The lion mothers think many people are being saved for an unlivable life – news Rogaland – Local news, TV and radio
