– You have been torn to pieces in the soul so many times. Then you have put yourself together again. Guro describes life as a relative of a son who gets drunk and has a mental illness. What we call ROP suffering. Guro is not her real name, but she lives in Rogaland and has got a dog to feel safer. Guro has received advice from others to cut contact. Move away. – But he is my son, she says. Instead, she waits for it to strike. – I live in constant readiness. When will the phone arrive? When will the priest come to the door? When does the drug addict come angry and want money? I know it’s going to hit, but I don’t know where or when. In the end, it stopped. He wants greater focus on the ripple effects when someone gets drunk. That the relatives are seen and taken care of to a greater extent. – Everyone sees the drug addict, but they don’t see the consequences beyond him. We need to gain a better understanding and be more generous. It is not easy to be close to a drug addict, says Guro. Because Guro gave everything, right up until it didn’t work anymore. – I usually explain it by saying that I was driving on the motorway with the gas pedal pressed down. To not feel the feelings. But then they took her back. Today he goes on unemployment benefits. She has received good help from a psychologist. Panic attacks are easier to handle. Side vision is back. – There should be a crisis team that could come in and help the relatives, she says. Experiences that relatives become incapacitated Chairman of the relatives’ organization Ivareta, Kari Sundby, is not surprised by Guro’s story. – The relatives ask for an enormous burden of care. It is almost impossible to combine it with work, says Sundby. Kari Sundby, chairman Ivareta. Photo: Marita Høyland / news Many of the people who contact Ivareta are often on long-term sick leave or on their way to disability benefits. And many are already on disability benefits, she says. Sundby points to three things they want to change: ROP patients must receive better follow-up in the municipal and specialist health services. The rights of the next of kin must be made clearer. The relatives must be given more rights. – The rights are very vague and easy to deprioritize in a busy weekday both in specialist health services and in the municipalities, she says. And when the rights are vague, it is difficult for the relatives to know what they are entitled to, Sundby believes. In addition, he thinks relatives should have the right to legal assistance and paid leave in periods. – If a ROP patient is in mental health care under enforcement orders, the next of kin have the right to appeal. The patient then has the right to legal assistance, while the next of kin do not. You then encounter a system that relies on much more knowledge than you do yourself, and this means that you, as a family member, are less likely to reach out, she says. The Ministry of Health and Care says they have strengthened the grant for next of kin measures aimed at people with extensive care tasks. – Before the summer, we presented an escalation plan for mental health. Our measures will have significance for, among other things, the group in question here. The plan commits over ten years, and we propose that it should be accompanied by at least NOK 3 billion, says State Secretary Ellen Rønning-Arnesen (Ap). Read the full response from the ministry at the bottom of the article. In constant alert, news has been in contact with the Relatives Centre. They also have the same experience as Ivareta when it comes to relatives and disability benefits. news’s investigations show that there are no specific statistics that can quantify this. It is often secondary ailments that lie behind the sick reports. Nav wrote in an e-mail to news that common health challenges for relatives can be sleep problems, concentration difficulties, worry, stress, anxiety and depression. Research has been carried out which shows that the role of carer entails new and worsening health challenges: Surveys among carers In 2021, Opinion carried out a survey for the Directorate of Health among 1,600 carers. Here, 54 per cent of relatives of people with serious mental disorders and/or substance abuse problems answered that they have had new or worsening health challenges due to the role of carer. In 2017, the Relatives’ Alliance published a survey among over 3,000 relatives in Norway. Here, as many as 80 percent of relatives of people with complex difficulties such as ROP sufferers answered that the role of relatives went beyond their health. Seven out of ten answered that they were constantly alert. It is difficult to know what one is entitled to. Eli is also a relative of someone with ROP. – An addict dies slowly. I feel that I, as a relative, also do that, says Eli. Her name is not Eli in real life. But she still drives with the gas pedal pressed down. Eli calls for help for himself from the healthcare system. Photo: Marthe Synnøve Johannessen / news – It’s like a 24-hour round-the-clock watch. The body is on standby all the time. I’m just waiting for something to happen, she says. Eli is still at work, but does not know how long she can last. Or if the body suddenly says stop. She lifts her shoulders to show how her neck is doing. The back has locked. – I don’t know what is best for me. To go to work or not. When I work a lot I manage to forget, but when I go to bed at night everything comes in dreams. – What do you need? – I don’t know what I need, because I haven’t been where I am now. She would like the healthcare system to inform about what is on offer. – No healthcare personnel have asked if there is anything I need, she says. The Ministry: – One should not fight a battle The Ministry of Health and Care Services tells news that relatives have the right to guidance and information. And legislate the right to get help when they experience particularly burdensome care work: Ellen Rønning Arnesen (Ap), State Secretary, Ministry of Health and Care – We must ensure that the offers that exist reach out. That is the most important thing. Because the rights are there, and one should not fight a battle to have them fulfilled, she says and points to the national Caregiver’s Guide. About Eli and Guro’s experiences with follow-up and help, Arnesen replies: – I think we have more to go on in a meeting with relatives. Both health personnel and people in close circles can ask if there is a need for help. Then you also find out more often what is needed. And it’s a good start to getting help that works. Regarding follow-up of ROP patients in the municipal and specialist health services, she replies: – We agree that the cooperation between the municipal health and care services and the specialist health services must be better. There is a need to strengthen the entire treatment chain. Therefore, the offer for people with long-term and complex needs is one of three areas of effort in the escalation plan.
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Relatives are reported sick and disabled – news Rogaland – Local news, TV and radio
