(This investigative article was first published, in Swedish, in March 2023, but we feel it is still relevant to our English-language readers)
Norran has spoken to two frustrated mothers who are critical of the way care for their children has worked - or rather, not worked. They have struggled for a long time to provide a decent life for their children and families. But when they have sought help, the care has failed.
In both cases, the problems started in the preschool and the parents tried to find solutions.
– We saw clear signs that our son might have ADHD when he was very young. For example, he had difficulty controlling his impulses, regulating his emotions, and was hyperactive. This led to problems at home and in preschool. We got help from the BVC (the child health center service) and a psychologist. But last summer I felt that something had to happen, said one mother.
After a long struggle, they were referred to BUP (the Swedish child and adolescent psychiatry service) at the beginning of this year. They were supposed to be contacted within 30 days. But no one heard from them. They received a letter saying their son was on a waiting list. After 90 days, the supposed care guarantee limit, they had heard nothing. They tried to contact BUP for several days in a row.
– It was impossible to get through. By 08:01 each morning, all available telephone appointments gone. I called every morning for four days.
Finally, she sent a message to 1177.
– I received a very casual reply saying that they only prioritized sick children and if I had any complaints I should contact the head of the department. My partner and I tried to call them for two days. We must have called ten times a day and even left our names and numbers.
Finally, they got back to us.
- I told them about our situation and how we had been treated and that the guarantee of care had not been honored. Then she said that we had no right to invoke the care guarantee. I asked how long we would have to wait, but she couldn't tell me anything about waiting times or where my son was in the queue.
– As a parent, you have to pull all the strings. But I always remember that there are children who don't have parents to push and call.
She is highly critical of the BUP's response.
– Not a single letter or phone call, to let us know they see and hear us. It's awful how it works. We fought for so long to get a referral to the BUP. Now we thought we would get help, but we don't. It takes a lot of time and energy to try to reach people. It's energy that you don't have because you have to deal with your daily life.
How does this affect you as a family?
– I will fight and struggle for my son every day. He is an amazing, curious, creative and caring boy with so many great qualities. It's important to us that adults reinforce his positive behavior and give him the right support and conditions at school, for example. He has a right to that.
They have now contacted a private clinic for an assessment. They paid 28,000 kronor for it.
Another mother has a similar story. The family has struggled for several years to get help for what they suspected was their child's ADHD. There were problems with referrals and with the guarantee of care. In the end, they decided to pay for a private evaluation.
– My child wasn't doing well in school and the situation at home was taking its toll on everyone in the family. I felt like I was falling apart.
At the private clinic, they got help right away.
– We are lucky enough to be able to pay for it ourselves. I understand that not everyone can afford it. It's wrong to make it a question of money. We have paid taxes, but we don't have access to the necessary healthcare.
But she also notes that it is an investment in quality of life.
– I am glad we sought help privately. It was very quick. They were really nice and easy to reach.
Her child was diagnosed with ADHD and eventually put on medication through BUP.
– My experience is that those who scream the loudest get help. How many children whose parents can't or don't have the strength to fight get into trouble before they get the right help?
What happened after he got the medicine?
- It is not like before. It is a totally different quality of life. It's a huge difference, like a magic wand.
Norran was also contacted by a mother whose child had been bounced between BUP, primary care and the contact center.
– Despite being registered with BUP, we have received no help. They don't seem to understand the procedures. They themselves said that things were not going well and that they would take action.
She confirms that it is "almost impossible" to call BUP and says that they have received information that only children and adolescents who are suicidal get help there.
They wanted to talk to someone, but had to wait two years because of the confusion. The mother wonders what it takes to get help, besides a diagnosis, trauma and other problems.
– I feel that my child's problems are too complex and advanced for primary care to handle. It needs to be a specialist. I have also requested tools and strategies to help, but they say that medication is the only solution.
She has started to consider paying for a psychologist herself.
– But I'm single and can't afford it.
Since 2021, there has been a contact center under the auspices of Region Västerbotten that parents and children can call to get help with mental health. The idea is to get quick access to care and an assessment. The contact center then sends the children to the right level of care, either BUP or the health center.
Monika Engman, head of the department, says the collaboration between the BUP and primary care works well. But the queues at the BUP and the staff shortage in primary care sometimes make it difficult to book appointments and get help quickly.
– We are seeing an increased inflow. The BUP has also increased its flow, but the pressure is great. Parents ask us about waiting times, but this is not something we can answer because it is about how BUP prioritizes.
One parent talks about how they have been shunted around. Is this something you recognize?
– Unfortunately, it is a fairly common aberration. The reason for this is that there is no consensus on care contacts at two different levels of care.
She explains that if, for example, you have been registered for an ADHD assessment at the BUP and at the same time you have a need for an interview at the health center, some have said yes and others have said no.
– We see kids being passed around. It is so unfortunate. Nobody thinks it's good. We cannot put out fires in one place by overburdening other health centers. So we have now started work to remedy this.
The work started in April 2023 and the results will be reported in December.
Contact your 1177.
1177 has counselors and psychiatric nurses who answer the phone and help with support, advice and scheduling care visits.
The idea is that children should not be bounced between units and should be referred to the right level of care.
Guardians, relatives of children between the ages of 0 and 17, and the children themselves can call.
They make about 20 assessments a day.