Løvemammaene meet with the Ministry of Health and Care Services

Løvemammaene' rights officer and board member, Gunn Helen Ege, and board member, Guri Wevelstad, were in a dialogue meeting today with State Secretary Ellen Rønning-Arnesen from the Ministry of Health and Care Services. They brought up the topic from the discussion in Dagsnytt 18 and shared many of the same views when it comes to the follow-up of children and young people with serious illnesses and their families.

In the meeting, we raised several of Løvemammaene' battle cases that deal with the absence of follow-up, coordination and help for our member families. We raised the major shortcomings of the current child coordinator arrangement. There is little doubt that the function has not functioned as intended, and words were spoken about the lack of authority, competence and resources in the current arrangement. When, in addition, different systems do not communicate across the board, there is little to coordinate for the child coordinator and the parents are left with the responsibility in practice. The conditions for being assigned a child coordinator are often set to have a certain scope and number of health and care services in place in advance, and we know all too well the battles parents fight to get the services they are entitled to. We must turn this around. We must have a child coordinator in place who assists the family from the start, who helps maneuver in the jungle of regulations and services, and who ensures families with seriously ill children and disabled children good services and progress. Here, examples were shown both in the form of package courses and national courses. Families should receive comprehensive service offerings and then this must be coordinated, and services must interact, also across. We were also challenged that there is no form of crisis team or emergency response team when families are put in crisis, as is actually the case when you are told that your child has a serious illness. Psychosocial crisis teams are not connected, these are families who are largely left to their own devices. The concept of "seriously ill children" must be included in the guidelines for psychosocial crisis teams and competence and resources must be ensured for the teams.

We also highlighted the important work that Løvemammaene do for our member families, which also shows how great the need is for good services, processes and coordination for the entire family. We focused on the need to clarify expectations for the municipalities, ensuring both resources and clear guidelines makes their room for action more transparent. The CRPD also plays an important role here. Our children are worth just as much as all other children and should have the same rights. This must be the starting point when discussing what are justifiable and necessary health and care services.

Løvemammaene thank you for a constructive and useful meeting, and look forward to further cooperation!