– We only reach a very small percentage of the around 8,000 children and young people who live with such serious diseases today, says senior doctor Anja Lee. She is responsible for the regional child palliative care team in Helse Sør-East and leads the interest group for child palliation in the Association of Pediatricians. After news published the case about the Andreas Hus children’s hospice, several people in the professional community got involved in the debate. Among other things, there have been chronicles in Sykepleien, Bergens Tidende and Fædrelandsvennen. The children’s hospice has so far received 90 million in earmarked funds from the state. The professional community believes it is unwise to spend state money on services that are exempt from the public healthcare system. – It is problematic that the politicians choose to start with what should be a supplement rather than building up the foundation of the service throughout the country, says Lee. Asking for 50 million news has mapped the money that goes to the public, so-called child palliative teams, in Norway. In the last two years, such teams have been established for seriously ill and dying children in all four health regions. The goal is for there to be separate teams at all of the country’s 19 children and youth departments. Last year, the health institutions received a total of NOK 6.7 million for the four regional teams. – The need is at least NOK 50 million. The money is given for one year at a time. Nobody knows if they will get further funding in 2023, says Lee. Lee states that at the local hospitals there is at best one person in the team who has been bought out in a 10-20 per cent position. – What they do today is primarily teaching in the hospitals and out in the municipalities. As well as guidance on individual patient procedures. – Terribly unwise Professor Stein Kaasa is one of the country’s foremost experts on palliation. He is also one of the biggest critics of using the children’s hospice model in Norway. Five years ago, he led the committee that concluded that a children’s hospice should not be established in Norway. In 2020, the Storting nevertheless decided to earmark money for Andreas Hus. – I have not yet seen any good arguments for how to spend NOK 90 million on this, says Kaasa. This week, the Association for Children’s Palliation announced that they are closing down Andreas Hus. The reason must be the government’s proposal to cut the earmarked funds in next year’s state budget. Large parts of the professional community are critical of children’s hospice: Anja Lee, senior physician at Oslo University Hospital (OUS) – It is problematic that the politicians choose to start with what is supposed to be a supplement rather than building up the foundations of the service throughout the country. It is also problematic that they choose to ignore advice from professionals and user representatives. It shows a lack of respect for the work done. Anja Lee is responsible for the regional child palliative care team in Health South-East and leads the interest group for child palliation in the Association of Pediatricians. Kirsti Egge Haugstad, leader of the Children’s Nurses Association – We stand here in 2022 begging at the doors. There are no funds to have positions. Many of the children’s palliative care teams have so few resources that they only manage to answer a phone every now and then. We could get so much more out of the corresponding amount where the child lives and for the individual. Britt Ingunn Sævig, Head of Department at the Children’s Cancer Association – The most frequent cause of death among children in the age group of one to 14 years is cancer. All experience shows that the family will be attached to the home. They want as much normality as possible in their lives. For the family, it is important that they can relate to people who know both the child, the treatment and them as a family when they reach the last phase of life. Will not survive a journey The non-profit organization Løvemammaenene is reacting to what they call an “extremely skewed distribution” of palliative care for children. They work to improve the rights of sick and disabled children. The lion mothers have stated several times that they are critical of the prioritization of a new children’s hospice. – The politicians start at the wrong end. There should have been children’s palliative care teams close to where people live first. They can then supplement, says Nina Bakkefjord. Nina Bakkefjord of the Løvemammaene organization says several of their members have children who are so ill that they will not survive a journey. Photo: Waqar Dar She heads the organisation’s aid service. There, she is in daily contact with parents who have seriously ill children. – When we ask our members what they want, it is local offers they are looking for. Most people do not want a children’s hospice, she says. The lion mothers represent almost 5,000 members from all over the country. By comparison, the Association for Child Palliation has 201 members. – Several of these families have children who will not survive a journey, says Bakkefjord. The children’s hospice in Kristiansand will have room for four seriously ill children and their families at the same time when it is scheduled to open in January. Photo: John-Andre Samuelsen / news Not getting follow-up Bakkefjord says that several members report large gaps in the public offer for the patient group. Among other things: Families who receive a diagnosis without a follow-up interview. Children who lack emergency plans. Families who lack contact with a child palliative care team. The services provided do not reflect the real needs of the family. Parents do not receive the necessary follow-up after the child’s death. It is difficult to get help for siblings. The chairman of the organisation, Bettina Lindgren, points out that they are not against Andreas Hus or other children’s hospices. They respond to the order of funding. – It is a fundamental principle in Norway that everyone should receive equal offers where they live. The politicians have failed there completely, she believes. Bettina Lindgren is chairwoman of the organization Løvemammaene. Photo: DAR Film
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Children’s palliative care teams in the public healthcare system ask for 50 million – news Sørlandet – Local news, TV and radio
