Hearing in the Health and Care Committee

Today, Løvemammaene participated in the oral hearing on the Ministry of Health and Care Services' budget for 2026 (the national budget). Project staff at Bære Sammen, Karine Hæggernæs, and chairwoman Bettina Lindgren participated on behalf of the organization.

Løvemammaene have also submitted a written consultation note to the committee members ahead of the oral hearing in which we raise everything from waiting times in BUP, pediatric palliative care, BPA, respite, lack of legal certainty, ASK in the specialist health service and digital exclusion.

You can see and read both below here.

The oral hearing in text format

In Norway, there are 8,000 children and young people living with life-threatening and life-limiting illnesses at any given time, i.e. those that fall under the concept of pediatric palliative care.

Løvemammaene follow and help many of these families, but the regional children's palliative teams have also begun to do so in the last three years thanks to the long-awaited earmarking of funds for establishment and operation in 2023 and 2024.

Løvemammaene are already seeing a dramatic difference between members who lost children before and after the initiative.

Where parents previously lacked information and plans, were poorly prepared for death, and lacked psychosocial follow-up for themselves and siblings,
Those who are now losing their children receive guidance and conversations, preparation for what happens in death, and experience security and care when the child dies, and afterwards. 

But this year and next year, there is no earmarking.

Children who are about to die, and their families, will thus be at the mercy of the health authorities' prioritization of allocating money to the teams.

These children - and their families - do not have time on their side.

Death does not wait for you in the Storting to see the value of prevention. 

This summer our oldest child died due to a serious congenital illness. We live in Alta and it is a long way to Tromsø, but we have still felt safe in the last years of our child's life, because we had a pediatric palliative care team behind us.

Our son was sick his whole life, but in 2020 we as parents began to think that something was very wrong. I remember asking to speak to the doctor myself, where I was so desperate and felt we must be doing something wrong, because he was only getting sicker. The doctor said that he would only get sicker, and he probably wouldn't grow old. He was palliative, but not quite there yet, because he was still quite healthy. We really felt that there was no one to talk to, no one was in charge, we showed he was palliative, but not "palliative enough" for a contingency plan to be made, or for anyone to talk to us. We became lonely in our worries and at times felt that we were maximizing the crisis of his illness. I wish there was a pediatric palliative team back then that was in charge and caught us.

In 2024 he became part of PALBU (children's palliative care team). In meeting with them we got to discuss with safe health professionals who are good at working with families who have palliative children. They were not afraid to talk about what is so brutal to talk about. But which is still so important. A plan was drawn up together, so that it was in the best interest of him and the family. We talked about wishes for the terminal phase, which was the part we feared the most, and we had someone to call if there was anything we wondered about. This allowed us to spend the time we had left together.

I remember so well the time before Christmas 2024. There had been many admissions and we were so unsure of how we would manage to create a nice Christmas. Having someone to talk to, to air our thoughts and worries, made us feel safer and had a nice Christmas celebration (which was his last Christmas).

And when he became terminal, the plan was clear, he and we were safe, his siblings were taken care of and included. We could concentrate on just being parents. And he had a good death.

For us, PALBU became a source of security. It is important to continue to earmark these funds so that we can continue to build up expertise in pediatric palliative care.

The written consultation submission

Hearing input from the Løvemammaene

Løvemammaene is an organization for children and young people with serious illnesses and disabilities, and their relatives. We have over 9,300 members. We live in the midst of the consequences of health and care policy, and know where the shoe hurts. The government's proposal for the state budget for 2026 contains good intentions, but for our families it appears as a budget that continues the status quo, instead of correcting the systemic errors that make everyday life unbearable for many.

Løvemammaene on the state budget

In 2024, the Patient and User Ombudsman received 17,723 new inquiries with 68 employees. In comparison, Løvemammaene answered a total of 109,700 inquiries in the same year without a single permanent employee. We are run exclusively by volunteer efforts from parents who themselves have experience with seriously ill and disabled children. Many of our volunteers have both experience and professional expertise in health, law, education and social sciences.

We answer daily inquiries from families who do not get help elsewhere. We regularly receive cases from the Patient and User Ombudsman, NAV's care money hotline, special health services, because the systems know that we have unique expertise and provide quick, precise answers. When families in crisis more often get help from a voluntary organization than from the public sector, it shows how critically necessary Løvemammaene are as part of the welfare structure. We fill a void that the state would otherwise have to cover.

We ask the Storting for an annual allocation from the state budget. We are not a supplement to the system – we are the system for many families where the system has failed. A fixed allocation is a socially and economically sound policy, and necessary to ensure sustainability, continuity and quality in the comprehensive support we provide.

Child palliation

Løvemammaene were pleased that in 2023 the government earmarked funds for the establishment and operation of the regional children's palliative teams (PALBU) in the specialist health service. These teams are operated by the health authorities, and have been financed through an earmarked grant (30 million in 2023, 31.8 million in 2024). This has been a necessary investment to ensure interdisciplinary, children's palliative teams in all health regions, and they make a critical difference for families living with children with life-limiting illnesses, and contribute to safety, interaction, psychosocial follow-up and a dignified death.

We are concerned that the 2026 state budget does not earmark funds for the children's palliative care teams. The Storting must ensure that the funds do not disappear into the independent health trust frameworks, but rather continue as permanent, earmarked funding.

Pediatric palliative care is not just about the last minute, but about giving children with life-threatening illnesses as good a life – and as good a death – as possible. Without stable PALBU teams, the security that families have begun to feel in recent years will erode.

We ask the Storting:

• Ensure permanent, earmarked funding for children's palliative care teams in all health regions
• Ensure systematic grief support for families after the loss of a child

Care allowance

There are large municipal differences when it comes to the allocation of care benefits. Today, care benefits are only something that the municipality is obliged to offer, but it is not a right that relatives have. It is a paradoxical provision as long as care benefits are intended to be a benefit that can be received “if you perform particularly burdensome care and nursing tasks that the municipality would otherwise have to do”. It would be far more costly for the municipalities and the state if the public sector were to do the work that relatives do, therefore care benefits are a reasonable solution. There is a need for better conditions for care benefits.

We ask the Storting:

• Caring allowance must be established as a right
• Bets to live on
• As a recipient of care benefits, you should also be enrolled in the municipality's pension scheme.

BPA and relief

For many families with children with complex and complex needs, BPA and respite care are essential to getting everyday life going. These programs are intended to give children and families freedom, security and the opportunity to live as normal lives as possible.

Respite care is a statutory service, but far too many are refused on grounds such as young age, caregiving responsibilities, etc. Parents are left alone with 24/7 caregiving responsibilities at the expense of health, work, and family finances.

BPA was supposed to be an equality tool, but in practice it has become a patchwork of different practices and refusals. Children and young people often do not receive BPA for school and kindergarten, and health care is not considered part of the assistance. As a result, many children lose the right to participate on an equal footing with others.

This is about children's right to quality of life and parents' right to be parents. We believe that the system must be turned around: it is the services that must be adapted to the child, not the family that must adapt to the system. No child should be isolated because of attitudes, or because the municipality lacks money or capacity to provide help. And no parent should be exhausted because the system fails.

We ask the Storting:

• Implement BPA reform in 2026, with clear national criteria, including the right to BPA in kindergarten and school, and the right to necessary health care within the scheme.
• Allocate funds for flexible and stable respite services, so that families actually receive the support they are entitled to.

The specialist health service

The budget includes 140 million for the entire field of mental health, but without a quantified part for BUP. Waiting times for children are still several months – in some places up to a year. Families are on their knees while waiting.

Our members often have to travel to other hospitals. After the change in regulations on March 3, only 711 NOK per day is covered in hotel reimbursement. There are no hotels at that price and many families have to pay thousands of rupiah for each trip. Several desperate parents say that they have to cancel/postpone treatments because they cannot afford them. A consultant at Rikshospitalet confirms that children do not attend check-ups because of this. When finances determine whether children receive necessary health care, we violate the principle of equal access to health services. No parent should be forced to choose between finances and their child's health.

We also lack measures to improve competence in ASK in hospitals. Children who use ASK have the right to understand and be understood in all parts of the healthcare system.

We ask the Storting:

• Introduce a hotel reimbursement rate that covers real costs
• Allocate funds to BUP
• Introduce separate waiting time targets for children in special health services
• Funds for ASK measures

Case processing time

In 2024, the State Administrators processed 8,958 complaints about health and care decisions. The government is proposing an additional NOK 40.5 million for SF, but it is of little help when municipalities still spend months making initial decisions, and no deadlines apply. When the municipality spends 6–12 months processing an application, the child is in practice denied schooling, leisure time participation and family rest for an entire year. When the complaint then remains with the State Administrator for a further 8 months, the child may have become too ill to benefit from the help that is finally granted – or in the worst case, the child dies in the complaints queue.

We ask the Storting:

• Introduce statutory deadlines for municipal case processing
• Give SF a mandate to prioritize issues concerning children

Digital exclusion

When children turn 12, parents lose digital access to their child's medical records at Helsenorge, without the child being able to log in with BankID. Parents are therefore not informed about test results and appointments. Many receive letters in the mail after the appointment was supposed to be and are charged a fee for "no-shows". This is a violation of children's right to safe and coordinated health care.

We ask the Storting:

• Fund the development of “represented access” at Helsenorge for parents/guardians of children over 18 years of age.
• Remove the 12-year limit in Health Norway so that guardians of children under 16 have full access to their children in the health service.

Finally, we would like to remind you that we are not asking for privileges, but for the opportunity to care for our children without being exhausted, ruined, or lost in the system. This is not about «extra services.» This is about children’s right to life, health, and participation – and parents’ right to be just that.

A health budget that does not see children with complex needs, or the parents who carry the system on their shoulders, is not sustainable – neither humanly nor financially.

With best regards
Løvemammaene