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HEALTH

‘Running out of options’: Husband’s fight to return paralysed wife to Sweden

A British man has told The Local he will continue the fight to move his paralysed Swedish wife home to Sweden, despite red tape blocking her access to Swedish healthcare.

'Running out of options': Husband's fight to return paralysed wife to Sweden
Hospitals in Sweden are unable to accept the woman as a patient without her re-registering in Sweden's population register first. Photo: Mikael Fritzon/TT

The woman, who is a Swedish citizen but has lived in the UK for 25 years, has spent the past year in hospital after a bike accident left her paralysed with a serious brain injury.

Her British husband has tried to return her to Sweden so the couple and their 12-year-old son can be closer to his wife’s mother and siblings. But because she is no longer listed in Sweden’s population register, bureaucracy has so far left them unable to move her back home.

Her story was first reported by The Guardian. The man – who wishes for him and his wife to remain anonymous – is now trying to contact more media organisations to try to raise awareness of his family’s situation.

“We’re a very private family. We would not have wanted to go contacting press organisations – I don’t want to have anything in the press about our personal information,” he told The Local.

“But we’re running out of options. I don’t want her to end up in a UK nursing home where she has no family, she has no support here. It’s just our immediate family, my son and myself here. There’s nobody else.”

His wife is unable to walk or talk, and must physically be in the country for her husband to re-register her as a Swedish resident at the Tax Agency.

Although those leaving Sweden retain their personal number for the rest of their lives, former residents are listed as emigrants and removed entirely from SPAR, the Swedish state’s personal address register, after three years spent abroad.

This means that, despite being a Swedish citizen, she must attend a Tax Agency office in Sweden in person to be re-registered in the system and for her personal number to be reactivated.

She is unable to walk or communicate, is paralysed from the neck down and is in a high-dependency unit in London requiring constant care due to her condition.

As a UK resident, she would be eligible for planned treatment in Sweden, but she would have to show a so-called S2 certificate approving healthcare in another country, a certificate showing her right to healthcare or medical insurance in Sweden, or a certificate showing that she lives in Sweden.

Without these documents, the family must pay the full cost of treatment themselves, unless they formally move to Sweden and are registered in the Swedish population register – something which can only be done upon arrival in Sweden.

The family has applied for an S2 certificate to fund her treatment in Sweden until she is re-registered as a resident, although her British hospital is unable to approve her travel unless they can confirm that she will be accepted for treatment at a hospital in Sweden. Swedish hospitals, however, can’t register her for treatment if she is not legally resident in Sweden, her husband told The Local.

She is therefore trapped in a situation where she cannot be transferred to a Swedish hospital directly from the UK without first arriving in Sweden to register residency – a process which can take weeks or even months.

“The problem is not funding, it’s about the bureaucratic tickbox, that she cannot be [registered as a resident] until she’s formally back on Swedish soil. She can’t be back on Swedish soil, because she’s completely disabled. And nobody will send her to Sweden because they need proof in advance that she’ll be cared for. So it’s an evil circle,” he said.

He has applied to become her Health and Welfare Deputy, which would enable him to make decisions on her behalf about her treatment and enable her British hospital to discharge her for travel to Sweden without having a Swedish hospital lined up in advance.

“But that may take another two to three years, the courts here are incredibly slow,” he told The Local.

“But if that ever does get resolved, then that would actually move things along. And then we could proceed with the S2 funding, take her to Sweden, once she’s in Sweden, then the problem goes away, then there’ll be new problems, different problems.”

“I mean, you know, none of this is going to be good. The outcome of her going to Sweden is, she’s still going to be 100% incapacitated and unable to communicate, our life is still going to be ruined, but at least, maybe, she’ll be in a prettier place where she has more family.”

The woman’s husband has been shocked by Sweden’s refusal to allow an exception to the rules and is worried that other Swedish citizens living abroad are unaware that this could happen to them.

“A lot of expatriate Swedes who are living abroad probably do not realise that they could get injured and if they’re not [registered in the personal register] anymore, they could potentially be barred from returning to Sweden.”

The family have visited Sweden many times, often spend their summers in the country and were making plans to retire to Sweden in the next year or so.

He told The Local that the situation has led to his view of Sweden changing.

“There’s the disabled rights aspect, Sweden’s usually cited as one of these enlightened countries that helps people and does the right thing. And it’s kind of shocking when you find out that this is not being enforced in this way.”

He has contacted 349 Swedish MPs, receiving only one response. He has also contacted the Discrimination Ombudsman and the Parliamentary Ombudsman, who didn’t take his case, he has contacted MEPs in Europe, the European Commission and the United Nations office of the High Commission for Human Rights who were all unable to help.

“There’s this deficit of democracy where you’re trying to contact people in Sweden, and everybody says, ‘Oh, I’m really sorry, but I can’t do anything’. There’s nobody you can appeal to. Here in the UK, I contacted my MP. And she’s been really helpful. But you can’t do that with your Riksdag member in Sweden. They can change laws, but they can’t help individuals.”

“That was kind of a big shock, especially when somebody is as sick as [she is] and really needs help now. You know, she can’t really afford to wait forever.”

Member comments

  1. Really strange to see that nobody seems to bother in the comments section. This is the second similar case reported by The Local, although the other one was reverse……an Alzheimer patient being deported to the UK.
    Like all very organised systems……when it derails……it really derails !!!

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HEALTH

Who should get vaccinated against TBE in Sweden?

Tick-borne encephalitis (TBE) has more than doubled in Sweden in the past decade. Who should get vaccinated against it and how much does it cost?

Who should get vaccinated against TBE in Sweden?

TBE, or Tick-borne encephalitis, is one of the two main tick-borne diseases in Sweden (Lyme disease is the other one).

It is a viral brain infection, which can cause a range of symptoms, usually starting with typical flu-like symptoms and then developing to include nausea, dizziness, and in around a third of cases, severe problems.

Symptoms usually appear around a week after the bite, but can take longer. There is no cure, but it can be treated, and there is a vaccination too.

The tick season tends to last from March to November, peaking in April to mid-June. According to the Public Health Agency, most TBE cases however tend to be recorded during the summer, as that’s the period when people spend the most time outdoors.

TBE is relatively rare, but has been on a fairly steady increase in Sweden in the past decade, from 178 confirmed cases in 2014 (or an incidence rate of 1.83 per 100,000 people) to 595 cases in 2023 (incidence rate 5.64), according to the Public Health Agency’s statistics.

Who should get vaccinated?

Because the infection can in a few cases lead to serious consequences, anyone who lives in an area where there’s a high concentration of ticks carrying TBE is recommended to get vaccinated.

That includes people who live there permanently and who have temporary summer homes, as well as people who spend a lot of time outdoors in these areas, but there’s no strict cut-off point.

Not all ticks carry TBE, and they have historically been concentrated in southern parts of Sweden and the Stockholm archipelago, but have been spreading across the country in recent years.

The regions that recorded the most number of cases last year were Stockholm (160, or an incidence rate of 6.52 per 100,000 people), Västra Götaland (121, or 6.85), Södermanland (55, or 18.22), Uppsala (52, or 12.85), Västmanland (33, or 11.75) and Värmland (31, or 10.93).

The only region that didn’t record a single case of TBE in 2023 was Gotland. Jämtland, Västerbotten and Västernorrland recorded one case each, and Norrbotten two cases.

You may want to contact your regional health services for specific information. Skåne, for example, only recorded 21 cases last year (an incidence rate of 1.48), but TBE is more common in certain parts of the region than others, and the region recommends that people living in these parts get vaccinated – there’s more information to be found on the region’s TBE vaccine page.

You can of course also get vaccinated even if you don’t live in a high-risk area, especially if you spend a lot of time in the forest or tall grass.

How can I get vaccinated?

You can search for healthcare centres near you through 1177.se or the website Fästing.nu (fästing is the Swedish word for tick – don’t confuse it with fästning, a fortress). To view regional information on 1177, go to the top of the page and click välj region (choose region).

The vaccine is not part of Sweden’s national vaccination programme, so you have to pay for it.

In Östergötland, the vaccine is subsidised by the region, so each dose of the initial three doses costs 200 kronor for adults. In a lot of other regions, including Stockholm, it costs around 400 kronor.

Only Sörmland, Uppsala, Västmanland, Östergötland and Jönköping offer the vaccine for free to children and teenagers, at least the basic vaccination schedule of the initial three doses.

How does the vaccine work?

You start with three doses (or four if you’re over 50), usually the first two within the space of one to three months and the third dose ahead of the next season, no more than a year after the second dose.

Each of these doses increases your level of protection, but because you need several to be fully protected, it’s recommended that you begin the vaccination programme well ahead of tick season.

You then get a fourth (or fifth if you’re over 50) top-up dose after three years, and will need top-ups every five years.

Children under the age of 15 are recommended to get the second dose one month after the first dose, then the third dose after 5-12 months. After that they follow the same schedule as adults, so a fourth dose after three years followed by top-ups every five years.

People with an impaired immune system due to underlying health issues are recommended to follow the same schedule as over-50s. They may not be able to reach a full level of defence against TBE, but the vaccine will offer enough protection that they are still recommended to get it.

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