Karina Hansen 2: the Ghost in the Room

Christmas 2015. A young woman sits in a wheelchair in a Danish rehabilitation centre. She mumbles incomprehensibly to herself from time to time but is otherwise unresponsive. With her is a close family member. She shows no signs of recognising him.

Is this the fate of “Karina Hansen: Prisoner of Denmark“?

****************

The History

Karina (pictured above) first became ill as a teenager. After much debate and disagreement between various health professionals, she was eventually diagnosed in 2008 with a severe case of Myalgic Encephalomyelitis (ME). However, as often happens with this illness, the diagnosis was disputed. Her parents continued to care for her in the family home.

Given her vulnerable state and the disputed diagnosis, Karina and her family arranged for her parents to be granted power of attorney on her behalf. At this time, she was deemed competent to make the decision.

In February 2013, Karina (by now aged 24) was forcibly, and without warning, removed from her home in Holstebro, Denmark. This process was carried out by a large team of people consisting of police officers, social workers, doctors and a locksmith. There had been a similar but unsuccessful attempt at removal some months earlier. She made desperate phone calls for help to her family until the battery in her phone died.

Karina was taken to Hammel Neurocenter (described as “The Research Clinic for Functional Disorders”) which treats patients with neurological damage and diseases. It seems that a number of doctors have been involved in Karina’s case but psychiatrists Nils Balle Christensen and Per Fink have dictated the overall course of her treatment.

As is frequently the case with ME patients (in Denmark and elsewhere), Drs Balle Christensen and Fink believe that ME is a “functional disorder” ie. effectively a psychosomatic condition. As a result, their recommended treatments are exercise therapy/physical rehabilitation, psychotherapy, “sensory” (occupational) therapy and psychotropic medication. Whilst these treatments can sometimes help patients with apparently similar conditions (who are often misdiagnosed with ME or – so-called – “chronic fatigue syndrome“), patients who genuinely have ME are very likely to deteriorate with these treatments – often with serious and long-lasting effects.

After her admission to Hammel, Karina was diagnosed with PAWS – also known as pervasive refusal syndrome. This is characterised by a patient engaging in obstructive behaviour which is designed to resist treatment.  It is usually applied to children rather than adults and is not a formally-recognised psychiatric condition. It is also tantamount to blaming the patient for the failure of inappropriate or dangerous treatment.

In September 2014, Karina was moved from the main clinic to a “rehabilitation centre” which is connected to the institution. She remains there to this day.

What is Karina’s status as a patient and why does it matter?

Karina was removed from home under the specific doctrine of “nødret” – which roughly translates as “necessity”. This is a fundamental principle common to many jurisdictions; it is used to justify extreme state interventions. In Karina’s case, the state believed her to be at risk whilst in the care of her family so a decision was taken (presumably in consultation with the relevant agencies) to remove her from home. Later investigations produced two reports from the Danish Board of Health; no further action was taken against her family.

Karina was detained for a short time under the nødret provision. After that, her status seems unclear. She was being treated by psychiatrists but whether she was classed as a psychiatric or a medical patient is uncertain. Hammel Neurocenter treats a range of conditions and diseases described as neurological rather than psychiatric although there is inevitably a crossover between the two. Significantly, it is claimed that all such patients at Hammel are there on a “voluntary” basis and no one is compulsorily detained.

The reason this matters is because there is a specific complaints/judicial procedure for psychiatric patients who are being detained involuntarily. The Danish process is set out in a 2012 article from International Psychiatry [1] from which this extract is taken: “The MHA [Mental Health Act of 1989] does not specify time limits for compulsory detention or treatment. However, in appeal cases it has been stated that if no improvement occurs within 6 months the patient should not be kept any longer for a ‘treatment indication’. ”

Since Karina was apparently classed as a so-called “voluntary” patient then the protection of the Danish complaints and review procedure would not have applied. The UK has a similar – though rather more rigorous – independent review process; in this country, it would be very unusual for any psychiatric patient – involuntary or otherwise – to remain as an inpatient for as long as three years.

The workaround?

In Karina’s case, it appears that an alternative strategy was used. Despite her status as a “voluntary” patient, she was now found to be incompetent to make her own decisions, reversing the earlier finding of competency. This resulted in a guardian being appointed by the state (see next section) to make those decisions on her behalf.

Presumably, the argument put forward was that she refused to communicate with anyone – quite possible, given the PAWS diagnosis. However, rather than simply interpreting that as showing incompetency, it seems reasonable to expect that the full background to her case would have been properly examined. Such an examination ought to have revealed her desperate efforts to resist admission to Hammel and the obvious reason for her subsequent withdrawal. However, despite a number of court hearings, the situation has remained the same but without more detail of the judicial process, it’s impossible to speculate further as to why this is the case.

(Note: Some of the legal documentation is available but not, as yet, in English so I cannot access it. Online translation tools are insufficient for this purpose. If the documents become available in English then I will be able to review them properly. The groups I have contacted have not been able to assist me with this so far.)

The reasons for Karina’s extraordinarily prolonged stay at Hammel are shrouded in secrecy. That in itself is extremely alarming. Whatever the real facts behind this case, she is likely to have become so institutionalised that, on any view, the future does not bode well.

Conflict of interest?

Following her initial detention, Karina was deemed incompetent and therefore lacking capacity to manage her own affairs. As a result, the power of attorney of her parents was overridden and she was assigned a state-appointed guardian to represent her and protect her interests. Because Karina is an adult, not a child, her parents have a very limited say in what happens to her.

Despite her obvious acute distress at her removal from home, she has been allowed almost no contact with her family. There have been a couple of brief visits by family members but she appeared not to recognise them. As a result of the change in guardianship, her family has been allowed no further input into her care; they have received periodic but sometimes conflicting updates on her condition.

I understand that Karina’s new (and now permanent) guardian, Kaj Stendorf, was the chief of police in charge of Karina’s district at the time of her removal from home. He is now retired from the police service. However, on the face of it (and without knowing what evidence was before the court when the decision was made to appoint him as permanent guardian) this appears to be an untenable conflict of interest and one which requires urgent public scrutiny.

Total systems failure

Three years on, there appears to have been a complete failure of all the checks and balances which would normally be in place to prevent such an apparent abuse of the welfare of a citizen in a supposedly democratic European country. The medical, social and legal processes all appear to have defaulted on their statutory duty to protect a highly vulnerable constituent of the Danish state. And – worst of all – no one appears to be accountable.

During my professional career as a British lawyer, I was often part of the process whereby the courtroom becomes a forum for collaboration between all the relevant agencies charged with protecting the interests of the most vulnerable in our society. Sometimes it works well, sometimes rather less so. Nevertheless, it is usually the last remaining barrier between a vulnerable person and the final destruction of their lives. I am beyond baffled as to how Denmark has so manifestly failed one of its citizens in such a manner.

Karina and her family have had some legal representation during the devastating events of the last four years. Those who are closely involved with the family’s efforts to protect Karina’s interests continue to work on her behalf. Inevitably, funding is an issue and has left the family at a significant disadvantage.

Various rights groups have intervened with a letter to the Minister for Health, a petition for an independent review of Karina’s diagnosis and a submission to a Danish parliamentary hearing in 2014. In October 2015, a letter raising Karina’s case signed by over 600 supporters was sent to the newly-elected Prime Minister; it has not been answered. Other similar efforts have achieved little or no progress.

Deprivation of liberty

Whatever the claimed justification for Karina’s continued presence at Hammel, the result is that she remains in de facto, if not actual, detention by the state. Whether or not due process has taken place remains unclear.

The question of whether or not her case could be taken to either of the European Courts dealing with human rights issues is often raised. Generally speaking, this could only happen once the legal process has been exhausted in Denmark’s domestic courts. In UK terms, this would be the equivalent of having concluded proceedings in the Supreme Court (the highest level national court).

Deprivation of liberty without due process is a clear breach of both Article 5 of the European Convention on Human Rights and Article 6 of the Charter of Fundamental Rights of the European Union. Other Articles may also apply to Karina’s situation. These provisions are incorporated into the domestic law of all member states; Denmark is a signatory to both the Convention and the Charter.  

Open justice and balance 

As yet, I have been unable to obtain details of the various court hearings which have taken place. There are reports of some irregularities in the process but without further information and verification I can’t pursue that line of inquiry further at this stage.

Interestingly, the Courts and Tribunals Judiciary in the UK put out a media release in November 2015 about increasing transparency in the Court of Protection (COP). The COP is responsible for the affairs of those who lack capacity (ie. vulnerable persons); it is the British counterpart of the court which has jurisdiction over Karina’s case. The first four paragraphs of the release read as follows:

Public and media will gain greater access to Court of Protection hearings after a pilot scheme starting next year.

The specialist Court makes decisions about the personal welfare (e.g. medical treatment) and the property and affairs of persons who lack capacity to make them themselves, applying a best interests test.

With rare exceptions, such as serious medical cases, hearings have usually been in private with only those directly involved in the case attending.

The pilot will reverse this approach and the Court will normally direct that its hearings will be in public and make an anonymity order to protect the people involved.

I started work on this post some time ago. In the interests of balance and as a further attempt to gain more background information, I asked an academic colleague to contact some of the protagonists in the process which has brought Karina to her current situation. My colleague is an expert on open justice in European countries and has researched the area extensively.

The following people have been contacted directly and asked for comment:

• The Minister for Justice
• The Minister for Health
• Per Fink
• Nils Balle Christensen
• Jens Gyring (consultant at Hammel Neurocenter)

So far, there have been acknowledgments from the two ministries but no substantive replies. However, Per Fink has replied on behalf of himself and Nils Balle Christensen. The (predictable) gist of his response is as follows:

That he cannot comment on individual patients; all treatment at the clinic is on a voluntary basis and no one is compulsorily detained; that there are some inaccurate stories being put out via the internet/social media; patient satisfaction at the clinic is high and there is a 1.5 year waiting list for treatment there.

If/when any further responses are received, I will either update this post or write a new one setting out the details.

Media scrutiny 

My searches reveal a few articles in the Danish press but nothing recent. Where is the mainstream media scrutiny which might have begun to uncover what has gone so wrong with Karina’s treatment, not only by the medical profession but also the executive and the justice system?

High-profile attention from outlets such as Fox News and the Boston Globe certainly helped to stimulate public awareness of the predicament of American teenager Justina Pelletier in 2014. Justina’s story was very similar to Karina’s (although, happily, Justina was eventually returned to her family); in both cases, grave concerns are raised not simply by a disputed diagnosis but by an entire state process. This is why the issues continue to require urgent investigation by international media organisations.

A note on verification 

The information which I have used to write this post is in the public domain. I have carried out due diligence as far as possible but it has been impossible to verify everything directly with the sources. Understandably, the family are concerned about the effect on both Karina herself and their access to information about her if they discuss the matter publicly any further at this stage.

In a Facebook post by the Justice for Karina Hansen group dated 8 November 2013, it was stated that the family were told by the Chief Physician at the clinic: “if you [the family] don’t agree with and support the treatment Karina have [sic] been put under by the psychiatrist in charge of treatment, Nils Balle Christensen, you will not have access to see Karina.”

The same post also says: “We would also like to inform you that it was Karina’s choice to go public with this story. In the month of May last year [2012], when the Danish Board of Health (Sundhetsstyrelsen) tried to incarcerate Karina for the first time, Karina expressed a wish herself that we should contact the media, hoping to stop this abuse, and get some approval and recognition of the horrible disease that Myalgic Encephalomyelitis is.” 

It is for this reason that I have written about Karina’s situation – both previously and now – despite the highly sensitive and deeply personal nature of the topic and the problems with verification. It would seem that Karina believed – as I do – that, in certain circumstances, the public interest in open debate outweighs the counterbalancing need to preserve an individual’s personal privacy.

If anyone has evidence that anything in this post is inaccurate then please contact me (see About) and I will make any appropriate corrections.

The Ghost in the Room 

There is no dispute that, prior to her incarceration at Hammel, Karina was extremely ill. She was very limited in what she could do but was able to communicate with her family and was being cared for in her own home, according to her express wishes as a competent adult.

Contrary to the views expressed by many psychiatrists and experts in psychological medicine, many members of the international ME community (around 20 million patients worldwide) know from their own bitter experience that there is still no proper treatment for this illness. Exercise and psychological therapies are generally of no benefit and often actively harmful. Patients are routinely neglected, stigmatised and even abused. This has been the situation for many decades in all countries where ME patients exist.

The young woman in the description at the beginning of this post is barely even a ghost of the person who was snatched from her family three years ago. And there are other Karinas in other countries, both children and adults; unbelievably, this situation is by no means unique. In the UK alone, TYMES Trust charity has advised 146 families (updated figure) since 2000, none of whom has been found to be at fault.

Where is the transparency and accountability which would subject these state missteps to public scrutiny and avoid future repetition of such catastrophic failures?

Too many ghosts in too many rooms.

****************

Disclosure

I have lived with Myalgic Encephalomyelitis since 1981. For more information see About.

****************

[1] PDF file (970 KB) containing article at page 88 can be downloaded here: International Psychiatry2012-MH LawDenmark-Page88