Although she is an adult, Aurora does not get to decide on her own life and where she will live. The 25-year-old is one of many young people in this country who live in nursing homes against their will. – It is an attack on me as a disabled person that I am not allowed to be an adult. I am reduced to a person who only needs to be cared for and who is a patient and who is not a whole person. Aurora has lived at Ullern health center in Oslo for over half a year. It has been established that the offer she receives is not justifiable, but her district disagrees. Collapsed after exams Aurora experienced the first signs of ME when she was 17. The committed and nature-loving girl noticed that her body was not as it should be. She consulted doctors. Asked what it could be. – I only heard that this is how it is for young women. That’s what it’s like to grow up. Everyone is a little tired sometimes. RUSS 2016. This picture was taken when Aurora was a Russian. With her is mum Hanne Hofsæth Fredheim on the left and sister Isolde on the right.RUSS 2016. This picture was taken when Aurora was a Russian. With her is mother Hanne Hofsæth Fredheim on the left and her sister Isolde on the right. After high school, Aurora took a bachelor’s degree in health management, started a bachelor’s degree in plain language at the University of Oslo and became involved in human rights for the disabled. But she kept getting sicker. Aurora struggled with memory and concentration. She fatigued more quickly and struggled with post-exercise aggravation. She had daily pain in her body and frequent headaches. – It was very difficult to get sicker and sicker and not be believed. NEW CHALLENGES WANTED: Aurora has always loved nature. In this photo from 2019, she challenged herself, even though she didn’t thrive at heights. Photo: Private SEEKING NEW CHALLENGES: Aurora has always loved nature. In this photo from 2019, she challenged herself, even though she did not thrive at heights. Photo: Privat Spring 2019 was hectic with two exams on the horizon. Aurora felt that it had gone quite well. When she got home to her student dormitory, her body said stop. She remembers that she got the wrong building she lived in. That she didn’t get in the door and up the stairs to the second floor. The next thing she remembers is more or less collapsing on her bed. Not how she got there. – I think I crawled, because my knees and hands hurt. Then I realized that things were not right. She was diagnosed with ME at Ullevål Hospital last autumn. Aurora became increasingly ill. She had to have help to go to the bathroom, eat and drink. The 25-year-old ended up in hospital. When she was discharged, the district placed her in a short-term nursing home. Aurora Leigh Kobernus (25) has been here at Ullern health center since February. Photo: Rolf Petter Olaisen / NRKH Aurora Leigh Kobernus (25) has been here at Ullern health center since February. Photo: Rolf Petter Olaisen / news Refusal of care services Aurora’s family has sent a number of applications for help to the Nordre Aker district in Oslo. Among other things, they have applied for a short-term stay at Røysumtunet. It is the country’s only organized care service for seriously ill ME patients. Oslo municipality has an agreement to buy places here. Four districts do so today. When Bydel Nordre Aker refused the application, the family complained to the State Administrator in Oslo and Viken. They determined that the offer Aurora receives at Ullern health center is not justifiable. The district was required to process the application for short-term space at Røysumtunet again. After another treatment, Aurora was rejected again. Half a year in a nursing home – No 25-year-old wants to live in a nursing home. It’s just a fact, says Aurora Leigh Kobernus. After she came to Ullern health center, she has become even sicker. According to her mother, Aurora’s voice has become much weaker than before. The daughter almost only has bad and very bad days. She has more pain and paralysis. Aurora has the most severe degree of ME. She is 100 percent in need of care. She gets her food through a rubber tube in her nose. At the nursing home, the 25-year-old finds that she does not always get help when she needs it. Whether it’s pain relief at night or help with urinating. Sometimes Aurora has to ask mom to call the nursing home. The 25-year-old wants to live at home with user-controlled personal assistance (BPA) 24–7. – Then I can choose when I want to get help and avoid waiting for hours with a bladder burst. The district has previously granted 12 hours BPA. – I also don’t get to drink as much water as I want or decide when to sleep. Aurora’s family has covered the windows with private curtains and black plastic bags so that her room will be completely dark. Photo: Rolf Petter Olaisen / news Aurora’s family has covered the windows with private curtains and black plastic bags so that her room will be completely dark. Photo: Rolf Petter Olaisen / news Aurora needs a lot of rest. She finds that difficult at Ullern health centre. Demented people can wander into her room at any time of the day. There is often construction noise from outside the house. – I applied for BPA to get my youthful life back. I want people to know that it is the neighborhood that is taking my life, not the disease. – Overtramp Aurora’s mother believes it is completely unnecessary for her daughter to live in a nursing home when there are other solutions. – I think it is a terrible overstepping, says Hanne Hofsæth Fredheim. Aurora’s mother, Hanne Hofsæth Fredheim, describes the battle they are in as a Kafka process, an impossible battle against an impenetrable bureaucratic system. Photo: Rolf Petter Olaisen / news Aurora’s mother, Hanne Hofsæth Fredheim, describes the battle they are in as a Kafka -process, an impossible battle against an impenetrable bureaucratic system. Photo: Rolf Petter Olaisen / news The mother does not expect the Ullern health center to have the expertise necessary for seriously ill ME patients. – They must look after patients who have femoral neck fractures. They look after patients who are basically elderly people. Many elderly people need lots of light, they need people to speak in loud, clear voices often. – And this is completely contradictory to what an ME sufferer needs, says Hanne Hofsæth Fredheim. – Does not comment on individual cases news has asked for a comment from Bydel Nordre Aker. Although Aurora has lifted the confidentiality obligation, the district replies that it has no opportunity to comment on individual cases. They still say that BPA in the home is probably not a good enough offer if you need round-the-clock medical follow-up. You can read the rest of the general response from the district here: Response from Nordre Aker district In the e-mail to news, department director for health and coping in Nordre Aker district, Camilla Glasø, writes: The district does not have the opportunity to comment on individual cases, but can respond in general on how we work with measurement and reassessment of services. In cases where the State Administrator revokes a decision, the district re-evaluates whether there is new information, needs and scope of necessary health care and makes a decision based on a new assessment. Ullern health center is the municipality’s highest round-the-clock medical care service. Here residents receive multidisciplinary treatment and care (nutrition, physiotherapy etc.), as well as regular medical supervision and follow-up. Ullern Health Center can make use of expertise from the National Expertise Service for CFS/ME at Oslo University Hospital, which is the leading specialist environment for the field in the country. It is the GP who has the opportunity to refer residents to treatment options for ME in the Specialist Health Service. The district’s task is to assess residents’ needs and clarify service offerings for necessary health care. If you need round-the-clock medical follow-up, home services such as e.g. BPA an adequate solution. BPA is an offer of practical assistance in the home and the assistants are mainly unskilled. If residents want measures at a lower level of care, the district must in any case assess the need for necessary health care, follow current health legislation, administrative law and national guidelines. The district is determined to put together flexible service offerings, for the good of the citizen, based on the services the district is legally required to offer and is dependent on dialogue to be able to do so. The district makes ongoing assessments of decisions so that needs (for necessary health care) and changes are taken care of in new decisions. Citizens are also obliged to contribute to the matter being disclosed. This means that we get the opportunity to get the matter well informed and thereby provide the right service. The Storting wants change The Storting decided last year to ask the government to change the law so that young people under the age of 50 will not be placed in nursing homes if they do not want it. 28 adults with a long-term stay in an institution in this country were in this situation last year, figures from the Directorate of Health show. For half of them there were concrete plans to move. In Oslo, Aurora is one of 15 young people with a short-term place in a nursing home, figures from the Nursing Home Agency show. How many of them live there against their will, no one knows. The Ministry of Health and Welfare is working on a bill. This will not entail a ban on people under 50 being settled in a nursing home, but there must be consent, the ministry states. Refusing to give up This is how Aurora’s friends remember her from high school. A cheerful girl with a burning commitment, sense of justice and blue hair. Photo: Privat This is how Aurora’s friends remember her from high school. A cheerful girl with a burning commitment, sense of justice and blue hair. Photo: Private Aurora Leigh Kobernus will not give up even if she lives in a nursing home among elderly people. – Several of my neighbors have died in the last six months, but my fighting spirit has not died out completely, yet.
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ME sufferer Aurora (25) is forced to live in a nursing home in Oslo – news Oslo and Viken – Local news, TV and radio
