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.”