Karina Hansen 8 (updated): the aftermath continues

GOOD NEWS: I originally published this post in June 2018. I am re-publishing it today (10 August) as there has been an encouraging development since then. Thank you to Bente Stenfalk (see below) for the updated information. Original post follows the update.

Karina in November 2016 shortly after her return home

UPDATE August 2018

On 9 July 2018, psychiatrist Dr Charlotte Emborg visited Karina at home. Dr Emborg was appointed by the court in Holstebro to make an independent assessment of Karina’s health and her capacity to manage her own affairs. It appears that Dr Emborg’s provisional report indicates the following important points:

• Karina does not suffer from any psychiatric illness
• She understands the role and purpose of her court-appointed guardian and she would like him to be removed from her case
• She is capable of managing her own finances

As a result of this assessment, there no longer appears to be any justification for retaining the guardian in Karina’s case. However, it remains to be seen if/when Judge Lillian Lund Tinggaard at the court in Holstebro will make the appropriate directions for his removal.

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ORIGINAL POST from June 2018

Regular readers of this blog will already be familiar with Karina Hansen’s horrifying story (as detailed in my series of posts) and with the often appalling treatment of myalgic encephalomyelitis (ME) patients generally. For new readers, and those needing a more detailed reminder of her story, there is a full summary at the end of this post.

Karina is a young woman from Denmark who became ill with the severe form of ME as a teenager. She was being cared for at home by her family but, in February 2013, she was forcibly removed by the state authorities and confined in an institution for three and a half years as a de facto psychiatric patient.  Her family members were not allowed to visit her and she was subjected to highly inappropriate treatment.

She was eventually allowed to return home in October 2016, in a far worse condition than when she had arrived at the institution. Both she and her family have experienced – and continue to experience – considerable trauma as a result of this state intervention.

I have recently received an update on Karina’s situation from Bente Stenfalk of Borgerretsbevægelsen (Civil Rights Movement Group in Denmark). Bente has been closely involved in Karina’s case since 2015. I have paraphrased Bente’s statement (with her permission) for clarification purposes. It does not make for reassuring reading:

June 2018

The case of Karina Hansen continues to be fraught with challenges. However, there has been one new positive development: Karina’s psychiatrist, Dr Mogens Undén recently prepared a fresh statement on her behalf and, as a result, she is now receiving a five-year pension.

Conversely, there has been no further progress in the ongoing court proceedings relating to the removal of her official guardian [appointed by the court in the mistaken belief that Karina lacked capacity to make her own decisions]. We are still waiting for the judge at the local court in Holstebro to consider Dr Undén’s new statement on Karina’s condition at the next hearing.

So far, the judge in Holstebro has refused to allow the removal of the guardian in Karina’s case. She recently ordered that a medical officer from the region visit Karina at home to check her living situation. However, the organisation that deals with the provision of such medical officers had closed down so there was no one available to carry out the judge’s direction. I tried to find out who was in charge of providing medical officers in the Region of Midjudland but they sent me to the North Jutland Region – who then sent me to the Board for Patient Safety. Months later, I am still waiting for a reply from the Board.

As a matter of the utmost importance, I have requested that no doctor who is unknown to Karina’s family visit her at home. The last time unknown doctors came to her home, she was forcibly taken away and incarcerated for three and a half years. There must be no repetition of such traumatic events.

Nevertheless, the judge has now decided that psychiatrist Dr Charlotte Emborg should visit Karina at home. Apparently, Dr Emborg will not make a formal statement; she must simply be satisfied that Karina is generally well and has the capacity to answer questions about her life and situation. It would seem that the judge has disregarded our request not to send an unknown doctor to Karina’s home.

It also appears that the judge did not listen to our recommendation that, as Karina’s psychiatrist, Dr Undén’s opinion should be given priority in her case. I had asked the court in Holstebro to treat his additional statement accordingly but I did not receive a formal response. At one point, a psychiatrist from the Research Clinic for Functional Diseases was proposed but then vetoed by Karina’s lawyer, Per Broe-Andersen as not being sufficiently independent. Eventually, Dr Emborg was accepted by all parties.

We are now at the stage where many people (including me) have observed Karina answer relevant questions in writing. These people include Karina’s parents + other members of her family, her psychiatrist Dr Undén, her lawyer, local physician Dr Stig Gerdes, her official guardian Kaj Stendorf and several people from the municipality.

It is unclear why the judge in Holstebro is failing to expedite the removal of Karina’s guardian. Mr Stendorf himself agrees that Karina no longer needs his intervention. However, this has been the consistent pattern with all state and judicial involvement in Karina’s case over many years. A change of official attitude is long overdue – before even more damage is done to Karina and her family.

Karina’s case is a national disgrace.

~Bente Stenfalk

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KARINA’S STORY

Karina 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, often in combination with unsuitable psychotropic medication. Despite often extreme physical and cognitive impairment, patients are frequently unable to access medical treatment with a knowledgeable physician. There is still no single universally agreed 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. Her condition deteriorated rapidly after her admission to the Clinic and shortly afterwards, she was found by the local court 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. 

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.

During the course of 2016, I wrote a series of articles 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.

On Monday 17 October 2016, after three and a half years of incarceration, Karina was able to return 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. The trial period passed without incident; Karina was home at last – but with a future changed forever.

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Disclosure

I have lived with the illness ME since 1981. For more information see About.