Noah Hedlund, suffers from severe scoliosis. Noah’s dad Ove lifts up her shirt. The back is oblique, and a hump is seen on the lumbar spine. It started in January last year, and had to undergo surgery. A decision on that surgery was necessary, it was taken in August.
– In the anticipation of it can’t Noah sit yourself on the floor as he had done in the past, but he must lie down or sit strapped in his chair. It is not dignified and he is in pain, ” says Noah’s mother, Linda Hedlund.
grows with anticipation. An early morning in the beginning of February would the surgery to get rid of. The parents knew that operationskapaciteten at the New Karolinska was halved due to the flu season, and that only a skoliosoperation performed every other week. But Noah’s surgery is estimated to take eight hours was a priority. A week’s hospital stay at the New Karolinska, and three-four weeks of rehabilitation at home. This had elvaårige Noah now been promised to a care place was reserved at the barnintensiven.
– It is a huge strain mentally for us as parents. It is a big operation, and it is hard to cut in even children, ” says Linda Hedlund.
a disability that affects both the brain and the muscles. The preparations for the operation were meticulous, and included the whole family, Noah himself was kept at home from school to keep healthy and younger sister Tuva was not allowed to take friends home the week before. Ove Hedlund, who was at the hospital, had taken off from work.
the surgical team was ready. Noah was duschad and ready and it was time to roll into the operating room when it all suddenly gets called off – there were no beds on the barnintensiven.
“Someone in the narkosteamet mumbled something about the RS-virus,” says Ove Hedlund, who tells us that he had first had a hard time to take in the information.
” It came as a shock.
Hedlund find themselves at the DN’s visit also Sandra Lind with 14-year-old son Noah Hammarlund. Noah, that he also has a severe disability, can walk but the feet are slanted and need surgery. The decision took Noah’s doctor for a year and a half ago. At the end of February would surgery finally get rid of, and three weeks before the written Noah in at Karolinska. Six hours was spent at the hospital for the meeting with the surgeons, anesthesiologists and nurses, but with a two week notice was the surgery.
” We know that Noah will not be able to go on six weeks after the operation, and it takes quite a lot of planning both with our jobs, and all the assistants. In the conversation with the staff, I understood how hard they think it is for them. They expressed how hopeless it is when all of the staff stops, ” says Sandra Lind, and continues:
– Now we are at a kind of stand by list. It’s like having constant readiness.
Noah Hammarlund need highly specialized care, and operations that are only done at the Karolinska. They are two of 1,700 children who are standing in the queue for the operation to the New Karolinska. The number of children who queue up to surgery has more than doubled since the hospital’s large-scale reorganization and the move into the new hospital building in 2016. In February 2016 was 800 children in the queue for the operation to the New Karolinska. Of the patients who now stands in the queue 415 waited more than the 90 days that the care guarantee stipulates.
Link to the graphics
the DN has been in contact with a handful of families whose children are waiting for operations at the New Karolinska. Kids go to the same school in Älvsjö, where all students have disabilities, and where the school administration certifies that a large number of students in a short time had the operations been postponed or cancelled.
– It is noticeable that the families are affected mentally and physically. As president, I see that this affects the students ‘ right to education. The school has not infrequently meetings on the care and rehabilitation around the operations to arrange the teaching – there is a lot of planning that goes into such a thing that does not become a reality, ” says Cecilia Hansen, the dean of the Jorielskolan.
she perceives a clear deterioration in the contact with the Karolinska, in connection with the much-discussed reorganization.
– the Deterioration came in connection with the reorganization. With 30 percent more managers, it is very unclear who is responsible. It has also been a huge turnover of staff. From Noah previously had a doctor, we have in recent years been different, and his present, I barely remember the name of.
the Parents have received information that the vårdplatsbristen is the reason why operations can not be carried out at the Karolinska. Already in december, it was clear that platssituationen was very strained before infektionssäsongen. Operationskapaciteten have been drawn down sharply during the first months of the year, and parents to the waiting paediatric patients have been informed of the possibility that operations could be set.
” We have a very strained vårdplatssituation and we have had to draw down on the operationsprogrammet and had to prioritize more in a year in which we have fewer places available than in the previous year. It affects the planned surgery, ” says Svante Norgren, temachef for children and kvinnosjukvården at the Karolinska.
” Yeah, I would definitely say. Slutenvårdskapaciteten has fallen from year to year. At the same time, the population has grown.
by DN revealed has also big problems with the new sterilcentralen, where the instruments are sterilized and packed. The instruments for operating theatres are supplied incorrectly or not at all, and it happens that the bloody instruments come from sterilcentralen. Hospital management confirm that the problems have escalated since last fall.
According to Norgren has problems with sterilcentralen a major impact on the ability to perform barnoperationer, as both delayed and cancelled.
– When we have a shortage of beds as limiting the sterilkapaciteten our operation capacity further. We would be able to operate more if we had a more reliable sterilflöde.
more vulnerable than vuxensjukvården when sterilcentralen not working as it should, according to Svante Norgren. If operationskön to be able to decrease after infektionssäsongen added to it, it is a prerequisite to sterilcentralen works better.
– In therapeutic practice, we do so many different procedures and treatments on children of very different size. It require very much equipment. It is then the hassles in this way so it affects us more. It is harder to have a buffer.
On the question of why operations are cancelled at short notice, ” says Svante Norgren that it is about the hospital’s trade-off between having margins in operationsschemat and to be able to operate as much as possible.
– If you also want to be able to operate as much as possible so there is a risk that you may set up a operation very late.
It has also become more common that surgery is cancelled. If a patient needs a intensivvårdplats, the situation is extra fragile, according to Norgren, when it suddenly might be needed urgently by someone else.
” But it is a very unusual situation that an operation becomes scratched when rolled into the operating room. We are hugely sorry to have to make such decisions.
tells the parents if the other operation that Noah would have to undergo. A metal plate had surgery in the hip in may 2017. It would ideally have been removed in may last year. No one has heard of from the Karolinska.
– It is we who may be on and nag. And now when skoliosoperationen is so acute, so we have not heard of us, ” says Linda Hedlund.
When Noah’s surgery was cancelled wrote Linda Hedlund a letter to the editor in DN, and she contacted the hospital management, who lamented what happened. Now has the son of a new elective surgery scheduled, on 9 april. But the family dares to only hope that it will be of.
Noah Hammarlunds mother Sandra says that they have not heard of that sterilcentralen not worked.
” we had no idea. You become afraid of the dark. There is so much that has happened at the New Karolinska, and you wonder how they’ll be able to turn it around here, ” says Sandra Lind.
Ove Hedlund says that they can’t help but think about the priority, over that their children with severe disabilities suffer so much. Linda Hedlund agree with.
” We have been in the vårdsvängen for almost twelve years, and in the past I have said that I am grateful for the opportunity to stay in Stockholm, where it works so well with all the support. Now, I can unfortunately not say it anymore, when it comes to health care.
