Children’s palliative care advocates put pressure on their politicians to fund Norway’s first children’s hospice

Eirik Vigsnes, Johanne Bjørnsdotter and Natasha Pedersen from The Norwegian Association for Children’s Palliative Care (FFB) has provided ehospice with this report on a public meeting held in Kristiansand with The Standing Committee on Health and Care Services : Politicians Support Action.

The Care of children with life threatening and life limiting conditions Must Be Improved – Now!

This was the unanimous message from the politicians from the standing committee on health and care services in Norway when they gathered in Kristiansand on Monday 15 October. The Norwegian Association for Children’s Palliative Care (FFB) had invited them to a panel discussion on the topic “How do we want the terminally ill and dying children, and their families, to be cared for?”

However, the politicians were not ready to promise the funding of Norway’s first Children’s Hospice in the next national budget. Their main message was that the government needs to consider the newly published Official Norwegian Report (NOU) on palliative care, “Of Life and Death” and which measures and actions will be included in the white paper to be drawn up.

“We can’t decide on a solution just before the National Budget is published. This is an important issue and the Conservative Party can’t promise anything in next year’s budget. But I can guarantee that we will follow up on this”, said Sveinung Stensland, representative of the Conservative Party (H) and Member of Parliament.

Olaug Bollestad (the Christian Democrats, KrF), leader of the Parliament’s Committee on Health and Care Services, went far in her support of the FFB’s ambitions of establishing the country’s first Children’s Hospice, in connection with Sørlandet Hospital Kristiansand.

“Natasha does a formidable job to improve the opportunities for families with fatally ill children. It’s very possible that a children’s hospice can be located in Kristiansand, where the tireless interest group FFB is already housed. I’ll be happy to speak up for such a centre. We have to start somewhere. We have to meet the 3-4000 terminally ill children and youth in this country,” said Bollestad.

Yes to a Children’s Hospice

The Labour Party (Ap) also supported the idea of a children’s hospice. “We would like a hospice as an alternative offer of care. This is stated in our programme. Norway needs a national Centre of Excellence for children’s palliative care. I think there is broad political support for a children’s hospice,” said Ingvild Kjerkol (Ap), member of the Committee on Health and Care Services. 

Åshild Bruun-Gundersen, of the Progress Party (FrP), and member of the Committee said: “This is an important issue for FrP. We support the idea of a hospice for children. Perhaps the municipalities in Agder county can work together to realise this. Public and private actors can together offer very good services.”

 Stein Kaasa, professor of palliative medicine at NTNU, was the leader of the advisory panel who drew up the NOU. He emphasised the necessity of spreading the knowledge on treatment and care of seriously and fatally ill children.

 “There is no doubt that an offer of palliative care for children is needed as part of the National Health Services. And it may as well be in Kristiansand. We need to test new models of treatment in palliative care. We have to gain experience and we have to conduct research on what works best in a Norwegian setting,” said Kaasa.

Natasha Pedersen did not mince her words when addressing the politicians

“Now we need action – not just talk. A children’s hospice must be realised within the National Health Services, but we also need volunteers to accomplish this. We are not a threat to other health services or children’s health departments, but we sometimes experience a reluctance from some sectors of the National Health Services. Some of them want to put us on the sidelines, and that feels very unfair,” she said.

 

Hans Christian Vadseth, who led the discussion, gave the panel the following challenge: “When it comes to our health, you are the most influential politicians in the country. When will you prove your goodwill and actually make something happen?” Their responses were as follows:

Ingvild Kjerkol (Ap): “There’s no time to lose, and the Labour Party are impatient. We want the regional health services to establish offers of care in every county.”

Olaug Bollestad (KrF): “I want the NOU given to the Parliament as quickly as possible. And we must remember that children’s palliative care is more than a children’s hospice. Proximity to the patients is important, so we need local offers of treatment.”

Sveinung Stensland (H): “We need to base the progress on the NOU. The hard work behind the NOU can’t be scorned by not basing the progress on it.”

Åshild Bruun-Gundersen (FrP):“We are all impatient. The Government are working on the NOU. We need to look at what measures can be done now, and what measures we need to plan more thoroughly, and there is a political consensus regarding this.”

It was perhaps at the end of the two-hour long discussion that the strongest messages came. A mother shared her experiences. 

“I am the mother of a child who died after being ill for some time. To have a terminally ill child in the family means working 24 hours a day. We needed time to breathe and we needed help during the last stages of life. But we were not listened to. There was no competence within the municipality. We were left alone with all the strain, and we wore ourselves out.” 

Laila Dåvøy, former Minister of Children and Family Affairs (KrF) and patron of the FFB, rounded off the discussion with the following message to the present Members of Parliament:

“There are hardly any offers of children’s palliative care in Norway today. We cannot wait for more research and more assessments on possible measures. Let’s get started and do something now, let us have a children’s hospice, and then you can continue working on the NOU.”