Karina Hansen 4: Timeline, Torture and Tragedy

BREAKING NEWS (4 April 2016)

It was confirmed yesterday that Homann law firm in Copenhagen has agreed to take this case. It has been difficult to find anyone of the right calibre to represent Karina so this is very welcome news.

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This post follows on from my previous posts Karina Hansen 3: Update March 2016  (KH3) and Karina Hansen 2: the Ghost in the Room (KH2). For the full background to this story, please refer to KH2.

[Update October 2016: Karina Hansen 6: THE HOMECOMING  – at last. See here for all posts about Karina.] 

A brief re-cap 

Karina (pictured above left) lives in Denmark. In 2008, she was diagnosed with severe Myalgic Encephalomyelitis (ME). The diagnosis was disputed and in February 2013, then aged 24, she was forcibly removed from home, where her family had been caring for her. She was taken to Hammel Neurocenter (part of “The Research Clinic for Functional Disorders” at Aarhus University Hospital).

Several doctors have been involved in her case but psychiatrists Nils Balle Christensen and Per Fink have dictated the overall course of her treatment at Hammel. Since shortly after her initial detention, she has been classed as a “voluntary” patient; 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.

Three years on, Karina remains a de facto prisoner of the state. She has been moved to a nearby “rehabilitation centre” 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 nevertheless in a wheelchair and unable to speak except for incomprehensible mumbling and grimaces. She did not appear to recognise her own father.

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Timeline of events

In an attempt to make sense of what has happened to Karina, I have constructed a Timeline. It is followed by some important explanatory notes.

THE TIMELINE

• 2006 Karina first becomes ill
• 2008 Karina diagnosed with severe ME (but this is later disputed)
• 2009 ME is re-classified by Danish Board of Health as Bodily Distress Syndrome, a somatoform/quasi-psychiatric construct. Two specialist clinics are designated in due course to research/treat BDS patients, one in Copenhagen and one at Hammel Neurocenter in Jutland.
• 2010 Dispute about the ME diagnosis escalates. Increased pressure for Karina to be referred to the Research Clinic for Functional Disorders. The family refuse this.
• 2012 First attempt at removing Karina from home fails. She becomes increasingly concerned and arranges for her parents to have power of attorney so they can act on her behalf.
• January 2013 The Danish Board of Health (BOH) produces a report which discusses at length how to justify removing Karina from her home by force and restricting contact with her family. They conclude that they could achieve this under Articles 3* and 8** of the European Convention on Human Rights.
• February 2013 Karina is forcibly removed from home under the emergency doctrine of “nødret” (necessity) by a team of police, doctors and social workers. This is clearly against her express wishes and those of her parents. She is incarcerated at Hammel Neurocenter.
• April 2013 Karina’s sister (a nurse) visits her at Hammel. Karina is already too incapacitated to communicate with her sister.
• May 2013 First court hearing: Karina is found to lack capacity so Kaj Stendorf (KS) is appointed as her temporary guardian, despite his apparent conflict of interest as former police chief of Karina’s district at the time of her removal from home.
• May 2013 An international symposium is held in Aarhus to celebrate 15 years of The Research Clinic for Functional Disorders and Per Fink’s 60th birthday. Ole Thomsen (director of health for Karina’s region) publicly congratulates Dr Fink and the team on having “dared to take a risk…[and] saved a young woman’s life” – with the aid of the Minister for Health (then Astrid Krag). British psychiatrists Peter White, Michael Sharpe and John Weinman are scheduled to attend and address the event.
• September 2013 Court hearing at which KS is confirmed as Karina’s permanent guardian, despite the family’s continuing opposition.
• October 2014 Karina is moved to the “rehabilitation centre”. The psychiatrists continue to claim that she is a “voluntary” patient and can leave whenever she wants (but she is physically and mentally incapacitated and cannot do anything without the guardian’s consent).
• October 2015 The District Court reaffirms KS as Karina’s guardian.
• December 2015 Karina’s father visits her at the rehabilitation centre. She is in a wheelchair, unable to speak, communicate or recognise him. She mumbles and grimaces incomprehensibly
• February 2016 Following another challenge by Karina’s parents, the High Court upholds the District Court’s ruling; KS continues as Karina’s guardian. Karina remains at Hammel, completely physically and mentally incapacitated. Not only has the treatment failed but she is considerably worse than when she was involuntarily admitted, three years earlier.

* Article 3 is the right not to be subjected to torture, inhuman or degrading treatment. Apparently, the BOH decided that Karina’s situation in being cared for at home by her family was equivalent to (for example) the treatment which might have been experienced by an inmate of the US military prison at Guantanamo Bay.

**Article 8 is the right to respect for private and family life; this is taken to include healthcare. The BOH concluded that Karina’s right to a private and family life was best enforced by removing her from her chosen place of safety in her home, being cared for by her parents. It is also important to note that, following lengthy investigation, no further action was taken against her parents for any supposed harm to Karina.

 Explanatory notes

1. ME is a complex, multi-systemic neuro-immune disease. The first documented outbreak was in Los Angeles, California in the US in 1934. The first similar outbreak in the UK was in 1955 at the Royal Free Hospital in London. The pattern has been much the same in many other countries. ME may have previously been mis-identified as “neurasthenia”. Historically, ME has been difficult to diagnose with the inevitable result that patients have been largely abandoned and stigmatized for decades (there is still no effective treatment and no universally-accepted diagnostic approach/biomarkers).
2. The cyclical involvement of the psychiatric profession has complicated things further by constantly shifting research and treatment towards the psychosocial treatment approach which is, at best, ineffective and at worst, harmful.  In many countries, (including Denmark, at Hammel where Karina was taken) recommended treatments consist of Cognitive Behavioural Therapy (CBT), Graded Exercise Therapy (GET), occupational therapy and psychotropic medications (eg. antidepressants).
3. ME (as defined in the 2011 International Consensus Criteria) has been burdened with a variety of different names and around 20 different case definitions. Since 1988, the term “chronic fatigue syndrome” (as “CFS” or “CFS/ME” or “ME/CFS”) has been widely exported from the US to many other countries. This has caused great distress to patients with classic ME and widespread confusion generally. Patients with CFS may benefit from the treatments mentioned above, as distinct from genuine ME patients who will mostly become worse with such treatment (particularly GET).

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How – but not why…..

The Timeline tells us how this chain of events came about but it cannot answer the vital question of why. As I explained in KH2, I asked an academic colleague to contact both the Ministers for Health and Justice and Hammel Neurocenter. Per Fink replied on behalf of Hammel that all patients are there on a voluntary basis and that the clinic is very popular (see KH2 for fuller details).

Despite repeated requests, the Minister for Health has 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 has sent standard acknowledgments but no substantive answer.

Professional reputations are key to personal and financial success in any sphere of life. The psychiatric profession is no exception to this; despite a wealth of evidence (mostly privately-funded) that ME is an organic disease, it has been singled out as an easy target by psychiatric healthcare professionals in many countries as a way of displaying professional skills and bolstering reputations.  For this to succeed, a ready supply of suitable patients is needed on which the psychosocial treatments can be shown to work.

In the UK, the controversial PACE Trial fulfilled that obligation admirably, thanks to unquestioning endorsement by many media organisations. In Denmark, the same process has presumably been in action with patients like Karina. However, despite several requests by Borgerretsbevægelsen (Civil Rights Movement group) for details of successful treatments, none has been forthcoming as yet.

Follow the money 

The unholy alliance of insurance companies, healthcare professionals and the pharmaceutical industry is frequently the subject of comment and debate in relation to many medical conditions. Given its nebulous nature and largely disempowered patient population, ME as a disease entity is particularly susceptible to manipulation by this dubious triad.

Keeping an illness defined as either “psychiatric” or “chronic” reduces or eliminates the need for payouts by insurers; pharmaceutical companies are only interested in investing in research and development which looks likely to generate a healthy (sic) income (such as the lucrative antidepressant market). The input of healthcare professionals is vital in maintaining the status quo for all parties; however, in this scenario, patients are no more than a cog in the investment machine.

The Danish clinics which carry out research on BDS (also known as MUS – medically unexplained symptoms – and FSS – functional somatic syndromes) receive funding from a number of different sources. These include:

• Substantial regular donations from TrygFonden, a charitable foundation owned by the Scandinavian conglomerate TryghedsGruppen.  TryghedsGruppen also owns Tryg, second largest insurance company in the Nordic region.
• Generous donations from the Lundbeck pharmaceutical company via the Lundbeck Foundation (see P 17 of link). Lundbeck’s home page proudly declares: “Progress in Mind is Lundbeck’s dedication to addressing the global burden of psychiatry and neurology”.

CSR (Corporate Social Responsibility) or COI (Conflict Of Interest)? Or both?

The role of the state

The “follow the money” approach also benefits state finances; maintaining an ill-defined disease status is instrumental in keeping the lid on increasingly stretched welfare budgets. The sick and disabled are merely collateral damage along the way. But does that justification really hold water in the case of the ME?

In 2015, the US Institute of Medicine produced a lengthy report called “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness“. The report states:

Between 836,000 and 2.5 million Americans suffer from myalgic encephalomyelitis/chronic fatigue syndrome—commonly referred to as ME/ CFS…….ME/CFS can severely impair patients’ ability to conduct their normal lives (at p 31)………..The direct and indirect economic costs of ME/CFS to society [in the US] are estimated to be approximately over $18 to $24 billion annually (at p 33) [my emphasis].

These “direct and indirect economic costs” consist mainly of healthcare costs, welfare payments and lost productivity. In recent years, the US’s average annual spending on “ME/CFS” research has been less than $5million (£3.54m/€4.47m). It doesn’t take a genius to work out that these figures don’t stack up. In the UK, government spending on ME research has been far less than that.

The economic costs of this disease burden are enormous; it therefore seems the height of fiscal irresponsibility not to have invested far more into funding ME research – with the focus on biomedical, not psychosocial, investigation.

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Legal issues 

In legal terms, Karina’s case is highly complex and encompasses a number of different areas of law (of which human rights law is only one strand). The issues involved present matters of significant public importance, both in Denmark and internationally. It also presents some serious challenges, not least in that there appear to have been anomalies in both the legal and executive processes right from the start.

Because of the now exceptional nature of this case, legal representation of the highest calibre is needed, ideally on a pro bono or reduced rate basis. There is a fund for donations towards legal costs (see end of post for details) but further funding is still required. Karina’s family have now exhausted all their own resources.

The method by which Karina was placed and retained at Hammel appears to have been artificially constructed and has resulted in a total impasse. The direct and indirect costs to the state of maintaining Karina’s constant care will be considerable. The amount it has already cost private donors and/or Danish taxpayers will be excessive; for this, the Minister for Health should be held accountable. (Estimated costs are in excess of 10,000DKK/£1100/$1500/€1350 per day).

Clearly there is an urgent need for a senior Danish lawyer to carry out an in-depth review of the case on behalf of Karina’s family (Karina herself cannot instruct a lawyer except through her legal guardian). Borgerretsbevægelsen has for some time been conducting a search for an experienced lawyer who is willing to take the case. As I mentioned at the top of this post, it has now been confirmed that Cristina Poblador is taking the case which is excellent news.

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THE TRAGEDY

As I said in KH3: “is her condition the direct result of a state-orchestrated plan which went horribly wrong?” If so, can the state not take responsibility for this error of judgment and return Karina to her home with appropriate compensation to her and/or her family in the hope that she might then be able to begin recovery from this traumatic episode? (see the case of American teenager Justina Pelletier – a structurally simpler case, legally speaking, but one which involves similar issues).

There are two separate answers to that question: the first is that the state is unlikely to agree to such a course because it could be construed as accepting liability thereby opening the floodgates to further claims. However, although Karina’s case is by no means unique, her circumstances must now be classed as exceptional and critical; her case could therefore be viewed as distinguishable from any opportunistic claims which might arise later on.

The second answer is this: in the case of ME patients, collective responsibility by the psychiatric profession for its mistakes – and the resulting injury to patients – is not deemed necessary. A broad coalition of psychiatrists and related groups appears to enjoy worldwide state-sanctioned immunity from the consequences of their actions; most ME patients, on the other hand, continue to carry the burden of a stigmatised and untreatable illness for the rest of their lives.

Karina’s situation is an extreme example of how badly wrong the process can go. In the continuing absence of a global political will to change this, her story will continue to be repeated throughout future generations. That is the tragedy.

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Acknowledgements 

Unless something unexpected happens, this article will be the last in my series about Karina for the time being. I would like to thank the following people for their assistance with compiling the information on which this series is based:

• Bente Stenfalk of Borgerretsbevægelsen
• Rebecca Hansen, Chairman of ME Foreningen – ME Association, Denmark
• The Justice for Karina Hansen group
• Katharina Voss, ME advocate/writer

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Disclosure

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

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