Reprinted with the kind permission of Valerie Eliot Smith
By Valerie Eliot Smith
On Monday 17 October 2016, after three and a half years of incarceration, Karina [Hansen] finally returned home to her family. The arrangement was on a trial basis but in the hope and expectation that she would be finally and permanently back where she belongs.
In recent weeks, Karina’s condition had improved slightly and her parents were able to visit her on a regular basis (more detail in my previous post
). As a result, meetings took place between those in charge of the Clinic at Hammel where she had been an inmate since February 2013 (see Karina’s Story below for background) and representatives of Karina’s family. An arrangement for Karina’s return home was agreed whereby her parents would take her home within the next few days and she would remain there for a trial period. If all went well, she would stay on at home permanently.
Significantly, Karina was well enough to sign a document saying that she wanted to go home with her parents. Although she was still unable to speak, she was able to communicate via gestures that she understood the plan and wished it to happen.
The trial period has now passed without incident and so Karina and her family have decided that they want to share the news with their friends and supporters all over the world.
Karina has finally come home.
A request for privacy
It is Karina’s birthday on 7 November, the first one she will have been able to enjoy at home with her family since 2012. Her supporters all over the world will be celebrating with her. There are various groups (on Facebook, for example) with more details of how to get involved.
The Hansen family is very grateful for the huge amount of support and many good wishes which they have received over the last few years. However, this is a time of enormous re-adjustment and they would like to request that, once Karina’s birthday is over, their privacy is respected. Karina has a long way to go with her recovery and her family members need time to adapt to their new situation and reflect on how to process the traumatic events of recent years.
Regular readers of this blog
will be familiar with Karina’s horrifying story (as detailed in my series of posts) and with the often appalling treatment of ME patients generally. However, for new readers, and those needing a reminder, here is a summary:
Karina (pictured top left, from her schooldays) lives in Denmark. In 2008, she was diagnosed with severe Myalgic Encephalomyelitis (ME).
[ME is a complex, multi-systemic neuro-immune disease; its controversial nature continues to cause immense patient suffering and distress. ME receives universally derisory state funding for desperately-needed biomedical research/treatment, despite having been accurately identified and described in the 1950’s and recognised as a neurological condition by the World Health Organization since 1969.
ME patients in many countries are still routinely referred to psychiatrists who use the inappropriate, and sometimes dangerous, psychosocial treatment model; patients are frequently unable to access medical treatment with a knowledgeable physician. There is still no recognized diagnostic pathway or treatment for ME – and definitely no cure, despite the claims made by some.]
Inevitably, Karina’s diagnosis became the subject of a prolonged dispute. Her family continued to care for her at home, in accordance with her express wishes. However, in February 2013, then aged 24, she was forcibly removed from her home by a large team of police, doctors and social workers. She was taken to Hammel Neurocenter
, against both her own will and that of her family. Hammel is part of “The Research Clinic for Functional Disorders” at Aarhus University Hospital.
Several doctors have been involved in Karina’s case but psychiatrists Nils Balle Christensen
and Per Fink
were in charge of her treatment at Hammel. Shortly after her initial detention, she was classed as a “voluntary” patient, despite having been taken there against her will; she was found by a court subsequently to lack capacity to make her own decisions. As a result of that finding, the court appointed a legal guardian to take responsibility for her welfare and make decisions on her behalf. Her condition deteriorated rapidly after her admission to the Clinic.
Three years on, in February 2016, Karina remained a de facto prisoner of the state. She had been moved to a nearby rehabilitation center but allowed very little contact with her family. Her father was permitted to visit her in December 2015. Whilst she was physically clean and cared-for, she was apparently immobilized, in a wheelchair and unable to speak except for incomprehensible mumbling and grimaces. At that time, she did not appear to recognize her own father.
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During the course of 2016, I have written a series of blog posts chronicling and analyzing Karina’s story from my perspective as a lawyer, a journalist and a long-time ME patient. On 12 October, I wrote a short update
detailing the changes which were beginning to come about in Karina’s condition. Although she still could not speak, her ability to communicate with gestures was increasing, her mobility was improving and her parents had been able to visit on a regular basis during the preceding weeks.
Official comments on Karina’s case
Regular readers may recall from earlier articles in this series that I contacted (via an academic colleague who is an expert on Open Justice in European countries) the Danish Ministers for Health and Justice and Hammel Neurocenter. These requests for comment were made in February 2016.
The Minister for Health replied two months after the original request and refused to comment on the basis of patient confidentiality (although the request was worded as a general inquiry rather than for specific information about Karina).
The Minister for Justice sent standard acknowledgments and eventually responded in July (nearly six months after the original request). The reply simply referred the inquiry back to the Minister for Health.
Per Fink replied within two days on behalf of himself and Hammel. In summary, he stated that all patients are there on a voluntary basis and that the clinic is very popular.
The Clinic has been contacted again for comment about Karina’s return home. I will update this article when I receive a response.
Where are we now?
The status of Karina’s legal guardian will need to be resolved formally by the Court. Whether or not his role in these proceedings (see previous posts
) is subjected to any further scrutiny is another matter. Only time will tell. And there are other issues such as ongoing medical treatment which will still need to be addressed so the story is not necessarily over yet.
However, the question which I asked in Karina Hansen 3: Update March 2016
remains unanswered: “In the absence of any clear explanation, the inevitable question arises: [was] her condition the direct result of a state-orchestrated plan which went horribly wrong?” Perhaps this question will be addressed if there are any further legal proceedings in relation to these events.
How much damage has been done to Karina and her family remains to be seen. After three and a half years in an institutional environment, there will be considerable adjustments and adaptations to be made. It is to be hoped that plans have been put in place and that appropriate support will be made available to them.
Significance of Karina’s story for the future
Karina’s story is horrifying. It is a story which should be of the utmost international concern, as a salutary reminder not only of a shocking breach of one young woman’s rights but also of the continuing scandal of the appalling treatment and stigmatization of ME patients all over the world.
It is also of supreme importance that a permanent record of these events is publicly available as reference material for the future. That is why I have invested so much time and effort into researching and writing this series of articles
(always whilst battling through my own brain-fog, one of the hallmark symptoms of ME and, for me, the most difficult of all to live with).
But, for now, the international ME community can celebrate the fact that Karina is free at last.
I would like to thank Bente Stenfalk of Borgerretsbevægelsen
(Civil Rights Movement Group in Denmark) for keeping me up to date with the Group’s work in assisting Karina and her family.
I would also like to thank Rob Wijbenga from the Netherlands for his support and assistance.