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HEALTH

EXPLAINED: What to do if you face a long wait for healthcare in Sweden

Sweden theoretically has a "healthcare guarantee" limiting your wait to see a GP to three days, and to see a consultant to three months. The reality is somewhat different. Here's what you can do if you face a long wait.

A doctor assesses a patient's lungs at a primary care centre in Stockholm.
A doctor assesses a patient's lungs at a primary care centre in Stockholm. Photo: Claudio Bresciani/TT

What is Sweden’s ‘healthcare guarantee’? 

Sweden’s “National Guaranteed Access to Healthcare” or vårdgaranti, is a right to care, protected by law, that has applied in Sweden since 2005. You can see the latest version of the relevant laws here and here. Here is a summary of the guarantee on the website of the Swedish Association of Local Authorities and Regions (SKR).

Under the system, all patients are guaranteed:

  • contact with a primary care centre by phone, in-person, or by video-link on the day they seek care 
  • an appointment with a doctor, nurse, physio, or psychotherapist within three days of seeking help 
  • an appointment with a specialist doctor or consultant within 90 days of seeking help 
  • treatment or operation within 90 days, if the specialist considers this necessary 

Does the guarantee mean I have a right to treatment? 

No. If the doctor at the primary care centre, after examining you and questioning you, decides that there is no reason to refer you to a specialist doctor, they do not need to do so. 

Similarly, if the specialist doctor, after examining you, decides that no treatment is necessary, then your case is considered completed.  

Can the waiting times to see a specialist or to get treatment be longer than 90 days? 

Absolutely. In fact, they very often are. 

According to the Swedish Association of Local Authorities and Regions (SKR), in February, 32 percent of patients had been waiting 90 days or more to see a specialist, and 43 percent of those who had seen a specialist had been waiting for treatment for more than 90 days.  

The situation in primary care was a little better, with 80 percent of those seeking care in contact with their primary care centre on the same day, and 83 percent having their case assessed by a doctor or nurse within three days. 

In addition, if you agree with your specialist doctor that you are willing to wait longer for an operation, then that wait doesn’t get counted in the statistics. 

So what can I do if I’ve been waiting longer than the guaranteed time? 

In reality, it’s actually less a guarantee than a target.

In primary care, there is no way for individual patients to complain that they have had to wait too long to see a doctor or nurse, or to cut their waiting times by citing the guarantee. 

“There’s no system for enforcing that guarantee,” says Emma Spak, the primary care doctor who doubles as section chief for SKR’s healthcare division. 

It would make no sense to set up a complaints line for those who have had to wait too long for phone contact with their primary care centre, she points out, when they could instead talk to patients seeking a primary care appointment in the first place. 

“It’s more of an incentive system for the regions,” she explains.

Every primary care unit and every region reports their waiting times to the national waiting time register, and then as part of the access agreement between SKR and the government, the regional health authorities receive a bonus if they meet their waiting times goal, or if they improve their waiting times. “That’s one way of sort of enforcing this guarantee,” she says. 

When it comes to specialist treatment, though, patients do have the right to demand to be examined or treated by an alternative specialist or hospital if they’ve had to wait longer than 90 days.

If your primary care centre issues you a referral to a specialist, and the specialist cannot then offer you an appointment within 90 days, the specialist, at the same time as offering you a later appointment, will often put you in contact with a unit at the regional health authority who will offer to find you an alternative specialist, either within the region or elsewhere in Sweden. 

The regional health authority will then have to reimburse any extra travel or hotel costs incurred by the patient.  

Similarly, if after examining you, a specialist cannot offer you treatment within 90 days, they will normally put you in contact with the same unit. 

Some regions have a phone line for people who have been waiting too long, or else you can contact your specialist or primary care centre and ask for information on seeking an alternative specialist. 

What happens if I don’t want to travel to see a specialist or get treatment? 

If your regional health authority offers you an alternative specialist, either within your region or in another region, so that you can get treated within the 90 day period, and you are unwilling to travel, then you lose your rights under the guarantee. . 

“If you’re in Gothenburg, and they say you have to go to Stockholm to get your treatment, and you say, ‘no, I want to go here, then then you’ve sort of forfeited your right, and you have to take what’s on offer,” Spak says. 

What happens if I agree with my specialist to wait longer? 

If your specialist says that they can treat you in four months, but also offers you treatment elsewhere within the guaranteed 90 days, and you choose to be treated by your specialist, then that counts as a patient choice, which will not then be counted in the statistics. 

“The specialist might say, ‘I don’t think you will get any worse for waiting two months extra, and if you wait five months, then I can make sure that you get your surgery done here, and we can make sure that you get all the aftercare and everything here as well,” Spak says. 

But these patient decisions are also counted in the statistics, and if a region sees a sharp rise in patients choosing to wait, SKR will tend to investigate. 

“If some region all of a sudden has a lot of patients choosing a longer waiting time, then we will call them and ask what’s going on here, because patients don’t tend to want to wait extra,” Spak says.  

Can I get financial compensation if I’ve been waiting too long? 

No. 

What other ways are there of speeding up the wait for treatment? 

Don’t underplay your symptoms

When drawing up their timetable for treatment and assessment, specialists will tend to give different patients different wait times depending on the urgency of their case.

For this reason, it’s important not to underplay your symptoms when visiting a primary care doctor, as they will tend to include a few lines on the urgency of your case when they write their referral. 

Stress your flexibility 

If you are unemployed, a student, retired, or have a very flexible job, it is worth telling your primary care doctor about this, because they may write in your referral that you are able to make appointments at very short notice. The specialist may then put you on their list of people to ring if one of their patients cancels. 

“Sometimes I write in my referrals that this patient could easily come at short notice, so please put the patient on the list for people you can call if there’s a time slot available,” Spak says. 

If you haven’t told your primary care doctor this, it’s not too late. You can ring the specialist yourself and tell their receptionist that you are very flexible, and ask to be put on the back-up list. This is particularly useful if you’re waiting for a scan, but you could also potentially work even if you’re waiting for heart surgery or a hip replacement. 

“If they’ve accepted you as a patient, and they’ve made sure that you fulfil the criteria for having that scan or whatever, then you can call them and say, ‘I have a really flexible job, I can come anytime if you have a gap,'” Spak says.

“A lot of people do that, because they can have [back-up] waiting lists. If you tell them ‘I work around the corner and I only need 15 minutes to be there’, then they might call you if someone doesn’t show up.” 

Ring up your specialist 

The queue system tends to be quite ad hoc, with no strict rules over who should be treated first, so it is often possible to reduce your wait by ringing up your specialist a few times a month, just to bring your case to their attention. Sometimes the receptionist will remember a slot that has just come free and bring forward your treatment while you are still on the telephone. 

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OPINION & ANALYSIS

What my burnout taught me about Sweden’s exhaustion epidemic

“Hitting the wall” is a well-known and widespread phenomenon in Sweden, where thousands are forced to take long-term sick leave because of clinical exhaustion. David Crouch, who hit the wall himself, examines this uniquely Swedish condition.

What my burnout taught me about Sweden's exhaustion epidemic

My burnout was like a slow-motion car crash. But I can name the precise day in July 2020 when I finally “hit the wall”, or as they say in Sweden, gick in i väggen.

It was nearly midnight and I was working – as usual. I was always on, using the flexibility of working from home to spread work across the days and into the weekends.

At that moment, I was also boiling a large saucepan of water filled with baby’s bottles to sterilise them. I completely forgot about it. Suddenly the smoke alarm went off and thick, poisonous fumes were filling the house.

But instead of getting our child away from the danger, I lost my temper with my wife for suggesting we call the fire brigade. In other words, I didn’t cope. The situation said stop, and I said go. The facts were black, but my head saw white. 

That was the start of the worst 18 months of my life. This article, and another to follow next week, are an attempt to find out if other non-Swedes have experienced something similar, and hopefully to prevent others enduring the same.

The issue is also unusually Swedish. Sweden has a problem with burnout and a unique approach to understanding and treating it. 

This country is going through a minor epidemic of what in Sweden is termed “exhaustion syndrome” (utmattningsssyndrom), known clinically in English as exhaustion disorder (ED). No other medical condition has seen such a big increase in Sweden over the past decade. 

Yet 20 years ago there was no such diagnosis, and it does not even exist abroad. So what is going on?

A major study of psychiatric disorders in Sweden identified more than 32,000 cases of exhaustion disorder in the period 2018-19. Psychiatric diagnoses have become the most common cause of sick leave in the country, and among these, stress-related conditions such as ED are particularly common. The rise in ED is an important reason for the increasing average length of sick leave, with many suffers needing to take six months or more off work.

In general, low-skilled occupations tend to have higher rates of physical injuries and illness. When it comes to mental illness, however, the pattern is reversed: well-educated occupational categories and desk jobs predominate. Employees in the media, for example, are three times more likely to be on long-term sick leave due to mental illness than farmers, while a lawyer runs double the risk compared to a construction worker. Among academics on sick leave in 2017, almost 55 percent had a stress-related diagnosis.  

ED is most prevalent between 35 and 44, in line with the assumption that the condition is often caused by prolonged, uninterrupted stress. A divorce or having young children are risk factors. 

If you combine work with taking on the brunt of responsibility in the family, this also increases the risk – which possibly helps to explain why women have a 40 percent higher risk of ED than men. This might be a particularly Swedish thing, as many women feel pressure to return to work soon after childbirth and continue their careers, while still being the mainstay of the family.

In recent years, many countries have seen an increase in people requiring sick leave due to psychiatric diagnoses. Many patients with stress-related problems suffer from extreme fatigue, sleep disturbance, and cognitive impairments going beyond the term “burnout”, which is more normally used to describe exhaustion due to work-related stress. 

In Sweden, the diagnosis of exhaustion disorder (ED) was developed around 20 years ago and has been gradually – and unevenly – implemented in clinical practice. There is a considerable overlap between ED and burnout, but ED includes not only work-related stressors but also those that happen in private life

In my case, I ticked all the boxes. Looking back, my descent into ED had been coming for the best part of a decade. Divorce, redundancy, kids, house-hunting, parental death, re-marriage, not to mention stressful jobs – frankly, well done to me for not crashing a long time ago. 

However, I am certain that moving to Sweden was an additional factor. There are multiple stresses involved in abandoning family and friends back home and building a new life in a foreign country. Immigrants to any country are setting sail on deep waters – in the case of refugees, sometimes literally as well as metaphorically. Some cope with it better than others. 

I coped pretty badly. After my embarrassment with the baby’s bottles, I more-or-less went to bed for six months. All I was fit for was watching TV. I couldn’t even ride a bicycle – my balance was shot to pieces. Exerting myself physically could mean going back to bed for a couple of days. I was miserable, irritable, and hell to live with.  

Luckily I had fantastic care from the Swedish health system, which took my complaints seriously and guided me expertly back to health. Meanwhile, money from Försäkringskassan enabled us to keep the wolf from the door. My only disappointment was that, although health care professionals had warned me about exhaustion, nobody had stepped in to stop me hitting the wall.

In next week’s article, we will look in more detail at the growing debate around ED in Sweden, its symptoms, treatment and preventative measures.

David Crouch is the author of Almost Perfekt: How Sweden Works and What Can We Learn From It. He is a freelance journalist and a lecturer in journalism at Gothenburg University.

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