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My response to a statement from Aarhus University Hospital (Denmark) regarding a demonstration in New York City and a patient at the Hospital

October 22, 2018

Screenshot 2018-10-21 at 23.59.35

 

On 17 October 2018, Aarhus University Hospital (AUH) in Denmark published the following statement (link here):

News

We have been informed by Columbia University that claims and information about a particular patient are spreading on the social media, including that this patient has received treatment at The Research Clinic for Functional Disorders at Aarhus University Hospital, Denmark. These claims are unsubstantiated and include misinformation.

It is a deplorable case that has affected all involved parties deeply. However, we believe that most people will understand that because of duty of confidentiality, we are unable to publicly discuss a patient without the patient’s consent. Further, we find that it is disrespectful and a violation of a young woman to expose her suffering and making her illness history public domain. Even confidential medical information has been published on the internet. She has not approved to be a front figure in an ideological fight.

The Research Clinic for Functional Disorders is an outpatient clinic. In special circumstances, we share treatment responsibilities with other medical departments, which we did in this case. The admittance to a rehabilitation facility was an act of necessity according to Danish legal practice – a decision which The Research Clinic for Functional Disorders was in no way involved in and therefore cannot account for.

In Denmark, it would not be possible to carry out an action as described on the social media; it would be illegal. In connection with the admission, her parents have taken several legal actions in the courts, none of them having resulted in any negative critique of the treatment. Besides, the course of treatment has been scrutinized by an independent committee of the Danish Parliament, again without leading to any negative critique.

In general, we can inform that The Research Clinic for Functional Disorders has never treated any patients against their will or refused any patients to leave the department or discharge themselves. Thus, to postulate that I or any member of my team have violated human rights is outrageous. It is reprehensible to suggest that I or anybody in the clinic have initiated or contributed to children being removed from their homes.

Our clinic is a department at the Aarhus University Hospital, which has been rated the best hospital in Denmark in the past 10 successive years. Like any other medical departments in Denmark, we have to meet the highest medical standards and act according to the law and are continuously being supervised by The Danish Health Authority. We have received extremely few complaints from patients that have received treatment in our clinic.

The department, the research and the treatments we have developed since 1999 have proven very successful and are well accepted both by most patients and colleagues. Initiated by The Danish Health Authority, this has now resulted in the implementation of similar clinics for functional disorders in all Danish regions (see English summary on p. 6 in the report ‘Functional disorders. Recommendations for assessment, treatment, rehabilitation and destigmatization’, published by The Danish Health Authority, June 2018). https://www.sst.dk/da/udgivelser/2018/funktionelle-lidelser-anbefalinger-til-udredning-behandling-rehabilitering-og-afstigmatisering).

Per Fink, PhD, DMSc.
Professor, Head of Department

The patient mentioned in this statement bears a striking resemblance to Karina Hansen. Karina is a young Danish woman diagnosed with myalgic encephalomyelitis/ME and later forcibly removed from her family home by the state authorities (see the end of this post for a full summary of her story).

For the purposes of this post, I am assuming that it is Karina to whom Professor Fink’s statement refers. For a chronology of Karina’s case up until April 2016 see Karina Hansen 4: Timeline, Torture and Tragedy. Note that this post predates Karina’s release in October 2016 and the removal of her court-appointed guardian in October 2018.

As I have written extensively about Karina’s case in this blog, this is my response to AUH’s statement (usual apologies for the loss of formatting from this point on: one day I’ll crack it…..):

Veracity of information

The AUH statement says (amongst other things) that misinformation is spreading on social media. As is always the case with this form of communication, there are some instances where the information which is being circulated about Karina’s situation is misleading and/or incomplete.
The information in my blog posts comes either directly from Karina’s family or was already available publicly. According to her family, Karina herself wanted her story to be publicised. The rest of the material contained in the posts comes from my own research and analysis. I’m well aware of the legal issues involved.
In writing and researching my own blog posts, I rely on information given and received in good faith from reliable sources and I carry out due diligence in verifying everything I write as far as is possible.
Legal and ethical issues
My early posts about Karina deal with the legal issues surrounding her incarceration and how this was constructed and achieved. It’s quite true to say that, technically speaking, Professor Fink and his team did nothing overtly unlawful. However, the motivation and justification for their actions is less clear.
During the course of my research, my colleague, Robin Callender Smith, contacted Professor Fink and others at Hammel Neurocenter as well as the Danish Departments of Health and Justice. From the Clinic, only Professor Fink replied and in a manner which took the matter no further. His response is in Karina Hansen 2: the Ghost in the Room. The state departments acknowledged our enquiries but followed up with no more than standard formulaic responses.
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The ethical nature of the #MEAction demonstration in New York City on 20 October is a matter for the organisers. The demonstration concerned Professor Fink’s guest presentation at Columbia University’s annual Psychosomatic Conference. Ethical issues and legal imperatives frequently share common ground but they are separate entities and give rise to different considerations. Since Karina’s story has been widely publicised with the consent of her family then, legally speaking, the US organisers of the demonstration should have First Amendment protection (as would any speaker at the conference).
Privacy issues
In most European countries, privacy is governed by a combination of domestic law and practice within each state, the European Convention on Human Rights (ECHR) and the Charter of Fundamental Rights of the European Union. There is always an inevitable tension between the right of individual citizens to a private and personal life (ECHR Article 8) and the right to freedom of expression ie. the right to impart and receive information (ECHR Article 10).
As is always the case where competing interests arise, these rights must be considered together and a balancing act carried out. Karina voluntarily surrendered, through her family, her right to personal privacy concerning her illness in favour of discussing the broader issues which arise from it. It would seem that she 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.
Levels of personal privacy protection in the US are much lower than the standards which are applied in European countries although patient confidentiality must always be considered in all jurisdictions. In the past, there have been public protests in Denmark about Karina’s situation where personal privacy is much more protected. To the best of my knowledge, no action was taken against the organisers.
AUH’s defence

Much of Professor Fink’s statement is self-serving in its defence of his actions and the University’s practices. I make no further comment on that.

Disclaimer
Nothing I have said in this statement should be taken as legal advice.”
Valerie Eliot Smith
22  October 2018
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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.

In October 2018, Karina’s court-appointed guardian was discharged from her case and she finally regained control of her own health and financial affairs. She remains extremely ill. 

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Disclosure

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

 

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6 Comments leave one →
  1. October 22, 2018 11:20

    Reblogged this on keuninckx.

    Liked by 1 person

  2. October 22, 2018 16:30

    Thank you Valerie. Have shared.

    Liked by 1 person

  3. Barbara McMullen permalink
    October 22, 2018 21:49

    His self-deceit is still flabbergasing to matter how many times I read it.

    Like

  4. lutherblissett permalink
    October 23, 2018 21:41

    “In Denmark, it would not be possible to carry out an action as described on the social media; it would be illegal.”

    Well done for Denmark becoming the first country in history for abolishing all crimes! What an unsung achievement! Quite why it was only announced to the world through the words of Per Fink, I can only wonder.

    I hope the resultant unemployment of all legal professions does not hit the economy too hard.

    Like

  5. October 30, 2018 02:24

    Hi Valerie,Firstly: The nerve of the man!Secondly:   When you’re having trouble matching up text formatting–usually because of format codes you can’t see, on top of people using paragraph (‘enter’) codes, instead of line break (‘shift enter’), that mess up all the bullet lists and paragraph numbering–the quickest way of cleaning it up is (*before*) pasting any formatted text into your new email, or other unknown formatted text field‎, to simply paste it into a very basic text editor like ‘notepad’, *with text wrapping turned off*; if this leaves you with broken lines, just cut out the excess space (making sure to make any new lines and line spaces with ‘shift enter’, and only using ‘enter’ for actual paras). Once your text is tidy and free of word wrapping, you can then copy it into your new document and it should adopt the same formatting as the rest. In word processors there is often a ‘show formatting marks’ button to help you see where the problems are, but I’ve not seen a phone that can do this yet, so it is a good idea to add a few line breaks *directly after the full stop* where you’ve got to in the main part of your new document, and paste your new clean text into that space. This will shift any dodgy formatting down and out of your way.  Often, if you try to just paste below your own text, you paste into an area with different formatting that you can’t see, so it’s best to keep your composition ‘within its own bounds’ set by the formatted space you made with your extra line breaks.When you’ve finished composing, you can forward delete to remove the unused formatted space.Sometimes it’s easier to just turn off HTML while you write your email, and then turn it back on at the end, but you might not get the links looking the way you like them if they were formatted different from the defaults.Hope I’m not ‘mansplaining’ here. It often catches me out too. And Facebook ‘Notes’ are a complete law unto themselves‎ which I always end up fighting for hours over the simplest thing. :)All the best,Steve. From: valerieeliotsmithSent: Monday, 22 October 2018 12:02To: steve.a.hawkins@ntlworld.comReply To: valerieeliotsmithSubject: [New post] My response to a statement from Aarhus University Hospital (Denmark) regarding a demonstration in New York City and a patient at the Hospital

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    Valerie Eliot Smith posted: ”

     

    On 17 October 2018, Aarhus University Hospital (AUH) in Denmark published the following statement (link here):

    News We have been informed by Columbia University that claims and information about a particular patient are spreading on the social “

    Like

    • October 30, 2018 09:05

      Thank you very much, Steve. The problem seems to arise mostly from using too many block quotes but I usually only remember that too late on in the drafting process.

      I will look more closely at your suggestions and see if I can use them to sort out the problem.

      Many thanks again. I really appreciate your help and advice. Best wishes.

      Like

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