– I’m disappointed, and I don’t feel heard.
Inger Therese Hof talks about plans new hospitals in Oslo.
She and her husband, John Harald Hof, returned to the Rikshospitalet in Oslo.
– Sonya has spent almost her whole life here.
The daughter was six months old when she developed cancer. She died three weeks before her third birthday.
no room to play
Father John Harald shows a picture on his mobile phone. In the fall of 2019, the daughter spent 12 weeks in isolation.
The window in the room was too high to see.
Even though she was sick, she wanted to play with her older brother. It should have happened on a mat on the floor.
– There was no place to play. So the rug was placed where the door to the hospital room opened.
Every time the doctors and nurses came to check on her, she had to stop playing and move around.
Sonya’s short life gave her parents a new life mission: to ensure a good environment for all the children in the hospital.
– We had such a good time here that we decided this was what we were going to do for the rest of our lives. Quite simply, Inger Therese says.
Life mission led to the Sonja Victoria Foundation, a magazine, and regular conferences.
Over and over they said. and noticed.
So much so that Oslo University Hospital wanted the institution to join the Steering Group for the Department of Children and Youth Hospital.
More than 100 representatives from many organizations attended. The foundation saw an opportunity to have her voice heard and the ability to influence.
It didn’t turn out that way. Experience is that everything has been decided before organizations invite. Their input was not taken further.
Inger Therese Hoff cannot guarantee the outcome.
I resign to speak. And use my voice to say that what we’re building now isn’t good enough.
Small rooms and rooftop terrace
The main problem is the space is too small, according to the parents. They respond to several solutions. The answers to Helse Sor-Ost and the hospital can be found in italics under each item.
- Small playrooms and common areas.
They are distributed throughout the hospital rather than congregating in one large common area.
- Few outdoor areas for children and young adults, many resolved by a roof terrace which parents thought was not suitable for children.
The roof garden is suitable for those who are not allowed to go outside. There are also outdoor areas at the entrance and near the hospital.
- Many of the children’s rooms overlook the hospital.
Only applies to rooms for short stays. Long stay rooms have a better view.
- The fact that the bathroom is located in the middle of the larger rooms for the children who will remain over time prevents, for example, from introducing more beds so that the family can sleep together at the same height.
The bathroom becomes a natural separation between the sleeping and living areas. There is room for an extra bed in the room.
- No permanent place was planned for families of sick children to live.
Children may have parents in the room. It will be assessed whether some of the buildings in the existing hospital can be used to house families.
John Harald ready in his speech:
– The new hospital is a huge procedural error, because it is not built for the benefit of children. It was designed for the best of Helse Sør-Öst management.
The company completely disagrees with the criticisms of the father. They believe that the new Children and Youth Center will provide a significant improvement for everyone.
– For the first time, a separate hospital for children and young people is now being built in Oslo. We’ve used the best architects and hospital planners and included staff and users for advice, says the company’s deputy general manager Jan Fritsch.
Glimpses of everyday life
Parents also have fond memories of Sonya’s time in the hospital.
Golden moments, little glimpses of everyday life.
The days when the daughter was good enough to go for a walk. Brothers play. and dinner.
As if they were going to live or die, they ate together every day, inside the room.
The felt bed that a parent slept on was pushed into the bathroom. The toilet seat became a chair on the small table.
We had dinner there together. She spoke of the day that was and the day that will come. John Harald says it was important.
more than patients
The parents confirm that the daughter received good treatment in the hospital.
– yes. We really felt that patient Sonia was well taken care of. Inger Thérèse says the person and child Sonia were not.
And they think this is the crux of the problem:
Children’s needs, except for medical, no one is responsible to think about.
No one puts their hand in the air and says “I have a responsibility to ensure that children’s rights are protected,” says Inger Therese.
Then the enterprise must do it itself.
Before they came to the field and asked for numbers, the hospital did not know how many children there were over time.
This was not a factor they had considered when planning the rooms in the hospital, Inger Therese claims.
During the engagement phase, the hospital says, an “additional investigation was conducted” to determine the number of children who stayed more than a week, two weeks, and so on.
Lay the foundation for determining the number of large rooms in the Children and Youth Center.
I have to live for something
In the future, too, many children will be sick like Sonya Victoria.
– What will these children live for? Why should they lie in the little white room and fight, when they can’t even look out the window?
John Harald Huff is upset.
While Sonya Victoria was alive, her parents tried to get her out of the hospital as much as possible.
To give her something to look forward to. So they can say that “When you’re back on your feet, we’ll go back to the horses at Gaustad.” Or on a boat trip or in a restaurant. Or – a trip home.
– He says the things that give life some meaning, some content.
– Because it’s a white, cold, and very big world out there. That’s what we give children, says Inger Therese Huff.
Prior to the publication of this case, OUS did not wish to comment on the parents’ experiences in the hospital or in the steering group.
But on Monday afternoon they wrote, among other things, this in an email to NRK:
«Inger Therese Hoff had many good opinions and helpful knowledge which we welcomed into the project. That’s why we invited her. It is a shame that she feels that her opinions were not heard, because they were heard.»
The hospital believes they have taken some of her input into account.
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