Can we afford to let him jump on the trampoline?

Daniel Rabbe underwent colon surgery when he was nine days old.

The fact that you’ve had a bowel movement your entire life has never stopped your mood. He is happiest when he is allowed to jump on the trampoline.

But a new rule in the Norwegian healthcare system has put an end to the fun.

The novelty of Daniel in 2020 is that, more often than before, he must be taken out of the game with the other children in kindergarten. He is also not allowed to be on the trampoline as much this year as he was last year.

The risk of leakage from the pouch in your stomach is too great.

Team fee

On January 1 of this year, Helfo introduced new restrictions on medical equipment for people with diseased intestines. Previously, there were no restrictions.

– Our challenge is that already in May we spend Daniel’s fee, so we have to pay the rest of the year ourselves, says Kristine Hansen, Daniel’s mother.

The new restrictions apply to different types of medical equipment for people with a stoma. For Daniel, the most important thing is a thickener.

The contents of the bag in Daniel’s stomach are usually as liquid as water. The solution to this is to use something called gel-forming granules.

The agent thickens the contents enough that the risk of leakage is greatly reduced.

Under the new rules, it only covers 4,000 doses a year. The problem is that Daniel needs up to 12,000.

The fact that the family has to pay two-thirds of the consumption constitutes in itself an extra cost of up to 6,500 NOK per month.

Although Daniel’s doctors have medically justified the use, Helfo does not have the opportunity to make exceptions to the rules.

Daniel has to change his ostomy bag eight to twelve times a day. Before the new restrictions, they used three doses of thickener in the bag.

Now they have limited it to one dose per bag.

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– Can we afford it?

Daniel’s parents want him to have the opportunity to be as active a child as any other five-year-old. But with the new restrictions, they must constantly prioritize how active they can be.

“Every day we have to consider if we have the time and resources to plan for him to have a breakout in an hour, because he’s been playing,” says Kristine Hansen.

She says her son spent significantly more hours on the trampoline last year.

– Then he could rampage, jump and run all he wanted without us having to think ‘Hey shit! We now have no more than this month’s budget for thickeners. “

You have a hard time getting your son, who also has Down syndrome, to understand why he has to sit a lot more calmly this year compared to last year.

– I think you think it’s pretty weird. You don’t understand it because you have other challenges as well. Independently; Any five-year-old doesn’t realize that mom and dad don’t have enough equipment to allow you to play, says mom.

Alto: – Very exasperating

Health Minister Bent Høie says he fully understands the family’s desperation. Now he promises that they will revisit the rules.

– It’s very maddening and you shouldn’t have to explain something like that to a child. Therefore, the health administration will now go through this, because this limit was not intended to have these consequences. says Høie.

The changes were already announced in the state budget for 2016, but did not take effect until this year.

– The background was that there were some who took out many things for which you could not professionally see that there was a base, so you put a roof. It was thought to be so high that it would have no negative consequences. Now when you see it, we’ve seen that we may need to make changes, it continues.

Kristine Hansen now hopes that the Minister of Health sees that a change is needed.

– If they still insist that they should have quotas, then there must at least be an opportunity for individual adaptation, because there is a small proportion of users who need a higher quota, he says.