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Nick Barber, Tom Hickman and Jeff King: Pulling the Article 50 ‘Trigger’: Parliament’s Indispensable Role

June 27, 2016

Re-blog from the UK Constitutional Law Association, following the UK’s referendum on 23 June 2016 in which a small majority voted to leave the European Union (EU). 

UK Constitutional Law Association

Barber-Hickman-KingIn this post we argue that as a matter of domestic constitutional law, the Prime Minister is unable to issue a declaration under Article 50 of the Lisbon Treaty – triggering our withdrawal from the European Union – without having been first authorised to do so by an Act of the United Kingdom Parliament.  Were he to attempt to do so before such a statute was passed, the declaration would be legally ineffective as a matter of domestic law and it would also fail to comply with the requirements of Article 50 itself.

There are a number of overlapping reasons for this. They range from the general to the specific. At the most general, our democracy is a parliamentary democracy, and it is Parliament, not the Government, that has the final say about the implications of the referendum, the timing of an Article 50 our membership of the Union, and…

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QMUL v IC + Matthees (PACE Trial) Part 2: Documents, Open Justice and Open Data

May 16, 2016

HMCourtTribunalServicePicNOTE: the judgment in this case is due any time now. This post provides a short case history and details of more documents made publicly available by the Tribunal.

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This post follows on from my previous posts QMUL v the Information Commissioner + Matthees (PACE Trial) Part 1 and  QMUL’s upcoming appeal against the Information Commissioner’s decision on release of PACE trial data. For a full explanation to the background and history of this case, please see my more detailed post from November 2015 Queen Mary University of London to appeal Information Commissioner’s decision on disclosure of PACE Trial data. 

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Case history and background

In March 2014, Mr Matthees sought some of the data from the controversial PACE trial, using the process set out in the English Freedom of Information Act (FOIA). This information is held by relevant public authority, Queen Mary University of London (QMUL). QMUL refused to disclose the data.

In due course, Mr Matthees complained to the Information Commissioner (IC) who, in October 2015ordered that the information be disclosed. QMUL appealed against the IC’s decision; that appeal was heard by the First-Tier Tribunal on 20-22 April 2016 in central London. QMUL and the IC were legally represented and QMUL called witnesses to give evidence. Mr Matthees had been joined as a party to the proceedings. He was not legally represented and did not attend the hearing but made written submissions. Judgment is awaited.

[Note: the PACE trial, which was published in 2011, relates to certain treatments for the condition known as “chronic fatigue syndrome” (CFS). CFS is often conflated (confusingly) with myalgic encephalomyelitis (ME) and referred to as CFS/ME or ME/CFS, to the detriment of genuine ME patients. This is the situation in many countries and has been for decades; it is the cause of significant confusion and distress to many patients worldwide.

The results of the PACE trial appear to promote psychosocial treatments which many patients find either ineffective or actively harmful. As a result, some patients have been using FOIA to try to obtain the trial data in order to understand how these results were achieved. However, most requests have been denied and, five years on, most of the data is still unavailable.] 

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The current proceedings

This case (which involves a request for eight subsets of trial data) is unusual in that it is only the third such request which has been appealed as far as this stage. Neither of the first two cases, both from 2013, was successful (read judgments at Courtney and Mitchell). This case differs from the other two in that 1) the IC was resisting QMUL’s appeal and 2) it was a live hearing with witnesses giving oral evidence. This was not the situation in the previous cases.

So far, there have been 37 requests for information to QMUL about the PACE trial; many of the requestors have been deemed “vexatious” which means the information does not have to be supplied.

The April Tribunal hearing and further inquiries

Those of you who read my previous post may recall the following extract:

On 17 April, I contacted the Tribunal Registrar and requested the documents for this case which were publicly available [as I was unable to attend the hearing]. This was refused (other than the IC’s decision notice which I already had). I repeated my request; again, it was refused.

On 19 April, I contacted the President of the General Regulatory Chamber (GRC) who has oversight of the Tribunals. I explained that this response was unacceptable and requested a full review of my application. He responded promptly and decided that I should be sent some of the public documents [see previous post for details and link], with a further review after the hearing was concluded.

On 25 April, I contacted the GRC President again, requesting the further review and asking for details of any departure from the usual principles of Open Justice during the course of the hearing.

On 3 May, I received a list of further documents which I will attach at the end of this post. My question about Open Justice was not addressed at all.

Open Justice and media coverage

On 6 May, I wrote again, asking for the Open Justice point to be addressed, clarifying that what I wanted to know was whether or not a reporting restriction order had been made at the hearing and, if so, what were the terms and what reasons were given. The general rule in British courts and tribunals is that anyone present can make a fair and accurate report of what happens in open sessions, unless otherwise stated by the court in a reporting restriction order, in which case reasons should be given in open court.

It is assumed that the Tribunal members will be impartial in their approach to the evidence before them. It therefore follows that restrictions on what can and cannot be reported about the hearing might trigger alarm bells within any group of people who might be directly affected by the Tribunal’s rulings. One would not normally expect the open sessions of a routine hearing about a clinical trial to require restrictions on reporting.

Given the amount of high profile UK media space which has been dedicated to the still unchallenged vilification of ME patients in recent decades (in contrast to the minimal reporting which has covered the real issues around the illness and the patient community) inevitably this is a matter which is of the utmost importance to patients, their families, carers and supporters.

On 11 May, I received the following reply from Brian Kennedy QC, the judge at the Tribunal hearing:

Dear Ms.Valerie Eliot Smith,

In response to your query;  ” —- whether there was any departure from the usual principles of Open Justice at the Tribunal hearing on 20-22 April — ” the answer is that there was not.

In relation to your interest in the subject matter of the appeal in question, and as a gesture of goodwill to you, (on the basis that you informed the Tribunal that you were unable to attend the appeal due to ill health), this Tribunal took the unusual step of asking the parties to the appeal to identify, in as far as they could, access to material that was in the Open bundle of material before the Tribunal. As a courtesy to the Tribunal, the parties kindly drew up the attached list for the benefit of any members of the public who wished, like you, to attempt to access such material. It is not an exhaustive list and in any event has only been provided as a courtesy and by reason of your request. It is not the function of the Tribunal to provide advice or access to material that the parties refer to in an appeal. The courtesy shown to you in this regard should not be taken as a response that the Tribunal or the staff therein have any duty whatsoever to undertake.

Reporting restriction?

So the answer about any reporting restriction is still not entirely clear but, in the absence of any assertion to the contrary, it seems that no order was made. In other words, those attending were free to report as they wished.

However, anecdotally, I understand that some of those attending were given the impression that they were prohibited from reporting on or discussing anything which took place during the hearing. One attendee told me this:

The main thing that surprised me was that the judge threatened any observer recording or even taking notes (via computer, hand, etc.) with contempt. He also warned sternly against anything about what happened in the hearing appearing anywhere online, social media, etc.

It appears that the issue of note-taking was clarified the following day and that this was allowed, albeit in a limited fashion.

If this was the climate of the hearing, it seems as though (in the absence of a formal reporting restriction order with full reasons given in open court) the usual principles of British Open Justice were temporarily suspended. And the inevitable questions arise, at whose instigation did this take place and for what reason? Incidentally, if a reporting restriction order was made, then I may well be in breach of it now, despite my best efforts to establish its existence and terms.

A matter of courtesy?

Judge Kennedy wrote: “The courtesy shown to you in this regard should not be taken as a response that the Tribunal or the staff therein have any duty whatsoever to undertake”.

Point taken; the Tribunal staff are severely over-stretched as it is and couldn’t possibly cope with requests of this nature on a regular basis (although I doubt they receive them very often). However, “The courtesy shown to you in this regard…” needs clarification.

On 19 April I framed my request in these terms: “I write a regular blog on legal and health-related issues. I would like to be able to write about this Tribunal hearing as an informed commentator. However, I am disabled by virtue of living with chronic illness and so cannot attend the hearing. I am therefore requesting that an accommodation be made for my disability.”

I was not seeking any kind of “courtesy” or favour from the Tribunal. I was asking for an accommodation for the disability which prevented me from attending the Tribunal proceedings in full. The Equality Act requires that proper consideration be given to such a request and reasonable adjustments made. It also helps if the response is not couched in terms designed to make the recipient feel uncomfortable about having asked.

List of publicly available documents 

A note containing the list of documents has been sent to me. It consists of articles, references to public information sites (such the NICE Guidelines), decision notices and judgments. No skeleton arguments or witness statements were included although I understand from the note that these were made available as part of an Open Bundle for those who were able to attend the hearing in person (although the bundle could not be removed or copied). This is unfortunate, as without access to at least the skeleton arguments, it is not possible to understand how, or if, the listed documents were used within the context of QMUL’s submissions.

There are links provided in the document list. However, the ones which I have checked don’t always work because they are inaccurate or incomplete. It may depend on the format/browser in which you view them. You can download the list from the link at the end of this post.

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The bigger picture and why all of this matters 

The PACE trial has had a severely adverse effect on the treatment of many ME patients all over the world. This particular Tribunal case is of unusual significance for reasons explained above. Judging by the viewing figures on this blog, people from many different countries are following its progress.

This Tribunal hearing broadly encompasses issues of law, media, transparency/open justice, science/academia, ethics, data sharing and – perhaps most important of all – the ever-increasing trend towards open data. It could quite reasonably be argued that, where a particular study is unusually controversial, the best way of addressing the issue is to make all the data available, with redaction/anonymisation where appropriate. If that were to happen, then all the interested parties could participate in the debate on an equal footing and in a properly-informed manner.

In the five years since the publication of the PACE trial, I have counted at least ten different sections of FOIA which have been used by the trial’s authors as reasons for not disclosing information. On any view, that seems a little excessive.

The judgment

The judgment determining whether or not the data will be released should be out shortly. In general, judgments are usually published within three weeks of the conclusion of the hearing but there is some flexibility in the timing. Any of the parties can appeal against the judgment but on a point of law only.

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Note: for more information about my background see the About section of this blog.

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DOWNLOAD the list of publicly available documents from the link below:

(NB. If you are using documents from this blog elsewhere, please quote the source and credit my work. Thank you.)

MattheesTrib OPEN LIST OF DOCUMENTS

 

 

QMUL v the Information Commissioner + Matthees (PACE Trial) Part 1: Tribunal hearing and Open Justice

April 28, 2016

HMCourtTribunalServicePicThis post follows on from my previous short post QMUL’s upcoming appeal against the Information Commissioner’s decision on release of PACE trial data: 20 April 2016. For a full explanation to the background and history of this case, please see my more detailed post from November 2015 Queen Mary University of London to appeal Information Commissioner’s decision on disclosure of PACE Trial data. 

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Brief re-cap

In March 2014, Mr Matthees – the original requestor (OR) – sought some of the data from the controversial PACE trial, using the process set out in the English Freedom of Information Act (FOIA). This information is held by the relevant public authority, Queen Mary University of London (QMUL). QMUL refused to disclose the data.

In due course, the OR complained to the Information Commissioner (IC) who, in October 2015, ordered that the information be disclosed. QMUL appealed against the IC’s decision (download the Notice of Appeal from 002 231115 Notice of appeal); that appeal was heard by the First-Tier Tribunal on 20-22 April 2016 in central London. The OR asked to be joined as a party to the proceedings. He was not legally represented and did not attend the hearing but made written submissions.

[Note: the PACE trial, which was published in 2011, relates to certain treatments for the condition known as “chronic fatigue syndrome” (CFS). CFS is often conflated (confusingly) with myalgic encephalomyelitis (ME) and referred to as CFS/ME or ME/CFS, to the detriment of genuine ME patients. This is the situation in many countries and has been for decades; it is the cause of significant confusion and distress to many patients worldwide. The results of the PACE trial appear to promote psychosocial treatments which many patients find either ineffective or actively harmful – hence their interest in accessing the data.]

The Tribunal 

The composition of the Tribunal was as follows:

  • Brian Kennedy QC – legally-qualified chair of Tribunal
  • Professor Darryl Stephenson – lay member
  • Nigel Watson – lay member

QMUL was represented by specialist QC, Timothy Pitt-Payne, instructed by solicitors Mills & Reeve LLP. The IC was represented by junior barrister Rupert Paines, instructed by solicitor for the IC.

Unfortunately, the Tribunal is not a court of record so there is no official transcript or recording of the proceedings, other than the notes taken by the Tribunal members and members of the public/press. All court proceedings are governed by the principles of Open Justice.

Open Justice (pre-hearing)

On 17 April, I contacted the Tribunal Registrar and requested the documents for this case which were publicly available. This was refused (other than the IC’s decision notice which I already had – see above). I repeated my request; again, it was refused.

On 19 April, I contacted the President of the General Regulatory Chamber (GRC) who has oversight of the Tribunals. I explained that this response was unacceptable and requested a full review of my application. He responded promptly and decided that I should be sent some of the public documents, with a further review after the hearing was concluded (download the short decision notice from 032 200416 PL Decision).

On 25 April, I contacted the GRC President again, requesting the further review and asking for details of any departure from the usual principles of Open Justice during the course of the hearing. Once I have received a reply, I will do an update. I understand that the Tribunal is taking further written submissions until 29 April.

I have uploaded the remaining documents at the end of this post. However, there are others which I would expect to be made generally available as part of the hearing (subject to the redaction of any Closed Material). If nothing else is forthcoming, then I would expect reasons to be given as to why that is the case.

Open Justice (at the hearing) 

I was unable to attend the hearing so I won’t speculate on what happened there. Anecdotally, I understand that QMUL’s witnesses gave oral evidence (which may have elaborated and/or expanded on their original witness statements, as often happens) and there were submissions by counsel for QMUL and the IC, in both open and closed sessions.

Unless a reporting restriction order is imposed by the judge, the general principles of Open Justice in the UK allow for full reporting of the open sessions of the proceedings. This can extend to real-time reporting on social media via electronic devices if permission is granted by the judge. Any departure from these principles should be explained in full by the judge, with reasons given in open court.

It appears that social media was being monitored – both before and during the hearing – for evidence of ME-related activity. In the case of specific PACE-related activity, this monitoring had already become apparent, as in, for example, paragraphs 22-26 of this decision notice from March 2015. Such monitoring is now common practice in litigation generally.

Once the judgment is published (sometime within the next few weeks) it will be possible to analyse both the hearing and the case in more detail.

Appeals – a reminder 

Whatever the result of the hearing, any of the parties can appeal to the Upper Tribunal on a point of law only. Notice of Appeal should normally be served within 35 days of the date on which the judgment is sent to the parties.

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Disclosure

I have lived with the illness ME since 1981.

I am a Visiting Scholar at the Centre for Commercial Law Studies at QMUL. I have nothing whatsoever to do with the PACE trial other than as a patient for whom no medical treatment is available, largely as a result of the trial’s purported findings.

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OTHER PUBLIC DOCUMENTS RECEIVED FROM THE GRC PRESIDENT SO FAR (as downloads):

NB. If you are using documents from this blog elsewhere, please quote the source and credit my work. Thank you.

IC’s response to QMUL’s Notice of appeal – 004 120116 IC Response

Original requestor’s response – 010 090216 R2 Matthees_Main_Response

Official list of hearing attendees – Hearing Attendees

 

QMUL’s upcoming appeal against the Information Commissioner’s decision on release of PACE trial data: 20 April 2016

April 14, 2016

HMCourtTribunalServicePic

What

Full details of the history and substance of this case can be found in my earlier post Queen Mary University of London to appeal Information Commissioner’s decision on disclosure of PACE trial data.

If you would like to learn more about how the process works, you can do so here FOIA: a Briefing Note + how many PACE requests?

When

On 20 April, the First-Tier Tribunal (Information Rights) (page 6 of link) will hear Queen Mary University of London (QMUL)’s appeal against the Information Commissioner’s recent decision regarding the release of data from the controversial PACE tria

Where

The hearing will take place in central London at the Residential Property Tribunal, Court H, 10 Alfred Place, London WC1E 7LR (just off Tottenham Court Road).

The hearing

It is listed to last for three days. This is because QMUL (with the benefit of full legal representation) has requested a full hearing with witnesses to give live evidence, as is their right. The alternative shorter process is where the Tribunal considers the evidence on the papers alone and makes a decision from that without hearing from witnesses. This suggests that QMUL is taking this case very seriously.

Hearings are generally open to the public, unless the Tribunal is considering “closed material” (often the core subject matter of the case) at which point the court room will be cleared. That may or may not happen in this case.

However, it is important to remember that, as is the case with all legal proceedings, changes can – and do – frequently happen right up to the last minute.

The parties 

The parties to this case are:

  • QMUL – the Appellant
  • The Information Commissioner – First Respondent
  • Alem Matthees – Second Respondent. Mr Matthees (the original requestor of the data) requested that he be joined as a respondent to the proceedings, as is his right.

Any parties to the case who are unable to attend the hearing but wish to take part can request participation a live videolink.

The Judgment 

The usual procedure is that the Tribunal hears the evidence and legal argument and then comes to a decision afterwards. The Tribunal consists of three people – a judge as the legally-qualified chair plus two lay members.

Judgment is not normally given at the time of the hearing as the Tribunal members have to discuss their conclusion. The judge will then write up the judgment which is generally served on the parties within three to four weeks from the conclusion of the hearing.

Appeal

Any of the parties can appeal to the Upper Tribunal so the process is not necessarily over yet. The right to appeal is not automatic at this stage but is on a point of law only.

If the Tribunal orders that the information be disclosed, this must normally be done within 35 days of the date when judgment is served on the parties OR notice of appeal must be lodged.

Judgments are public documents and are made available via the Tribunals website.

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Karina Hansen 4: Timeline, Torture and Tragedy

April 4, 2016

KarinaHansenStockPic

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 2016Karina 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 at 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:

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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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DONATIONS

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Karina Hansen 3: Update March 2016

March 7, 2016

KarinaHansenStockPicThis update follows on from my previous post Karina Hansen 2: the Ghost in the Room. For the full background to this story, please refer to that post. There is now also a more detailed post at Karina Hansen 4: Timeline, Torture and Tragedy (April 2016) with a further brief update at Karina Hansen 5 (October 2016).

A brief re-cap…..

Karina (pictured left) was diagnosed with severe Myalgic Encephalomyelitis (ME) in 2008. The diagnosis was disputed and, as a result she was forcibly removed from home, where her family had been caring for her, in February 2013. She was then aged 24.

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

…..And now

Three years later, 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. However, her father recently visited her. 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 recognise her own father.

Although Karina was extremely ill before she was removed from home, she was still able to stand up, speak and communicate with others. She was being cared for by her family, according to her express wishes as a competent adult. Her condition as evidenced by this recent visit represents a frightening deterioration in her physical and mental health and wellbeing.

Karina’s state indicates several possible causes: for example – she is excessively over-medicated; she has experienced acute trauma; she is now suffering from serious neurological damage – or any combination of the three. In the absence of any clear explanation, the inevitable question arises: is her condition the direct result of a state-orchestrated plan which went horribly wrong?

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UPDATE – legal (for more background see previous post) 

On 26 February 2016, the Danish High Court heard an appeal by Karina’s parents against the guardianship order imposed by the District Court. This order had confirmed Kaj Stendorf as Karina’s permanent legal guardian. Mr Stendorf was the chief of police (now retired) in charge of Karina’s district when she was taken from her home by police against her will (see previous post). The appeal failed and the District Court’s order was upheld.

This means that Karina remains subject to the guardianship of a man who was a party to the state agreement that she should be forcibly removed from her home. This act was clearly against the express wishes of both Karina and and her family. The guardianship order therefore appears to represent a serious conflict of interest which, on the face of it, does not seem to have been properly considered by the Court.

I have recently been given some further information about the background to Karina’s situation. It may be that I need to take off my journalist’s hat and put on my lawyer’s hat for a short time. This might mean that I won’t be able to discuss the legal aspects of Karina’s story in any detail for the time being as some of the information is given in confidence. However, I will continue to keep the blog updated as far as possible.

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UPDATE – accountability

In my previous post I wrote:

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)

Per Fink replied on behalf of himself and Hammel saying that all patients are there on a voluntary basis and that the clinic is very popular (see previous post for fuller details).

So far, there has been an acknowledgment but no substantive reply from the Minister for Justice. This is being chased up.

The Minister for Health has responded in the following terms: “Please note that information about specific patients in the Danish healthcare system is confidential and will not be released to third parties.” This is, of course, entirely predictable (it would actually be very alarming if the Minister was giving out highly sensitive personal information in response to random inquiries). However, this inquiry was framed in terms of open justice (as a comparison with the recent changes in the equivalent British courts – see previous post) using Karina’s case a specific example. It was not a request for information about a specific patient as such.

Further emails have been sent to the Ministers for Health and Justice repeating the query and setting out more detailed questions for response/comment. I will provide further updates as and when any replies are received.

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The human rights issue 

In my previous post, I mentioned the human rights issues which apply to Karina’s case. As a European citizen in a country which has signed both the European Convention on Human Rights and the Lisbon Treaty (which includes the EU Charter of Fundamental Rights), Karina is entitled to the rights protection afforded by both. I haven’t written about this in detail before so I think it is necessary to clarify how that works.

It is often – and quite reasonably – assumed that these rights can only be argued in the European courts. This is not the case; where it is relevant, these rights can and should be argued alongside the primary relevant law in the domestic courts of each member state. This is best explained by using an example from a different area of law as it would be applied in the UK (the UK’s relationship with Europe is very similar to Denmark’s). This example uses the law relating to those claiming asylum from persecution in their country of origin:

X is an Afghan national who speaks good English. At some point during the occupation of Afghanistan by Coalition forces from 2001-2014, he (most are men rather than women) worked as an interpreter for the British army. Following the withdrawal of British forces in 2014, X is threatened by the Taliban and it becomes clear that both he and his family are at extreme risk. He flees to the UK and seeks asylum under UK law. His application is refused and he appeals to the Immigration and Asylum Tribunal.

X’s appeal is based firstly on the UK’s domestic legislation which governs asylum applications. However, alongside that argument, he can claim that his rights under the Convention/Charter have been interfered with (breached). Depending on his circumstances, he could argue that one or more of these rights has been subject to interference by the UK state in its refusal to grant him asylum.

For example, he could argue under the right not to be tortured (as he almost certainly would be if the UK returned him to Afghanistan). So, in the UK courts, he argues firstly on the grounds of domestic asylum law and secondly on the grounds of the human rights law which has been incorporated into the UK’s national law from Europe.

So – back to Karina; in her case, the arguments which hypothetically might have been made on her behalf could have used the following areas of law:-

  1. The local law of Denmark which governs the treatment of those who are found to lack capacity resulting in the appointment of a legal guardian and
  2. The human rights law which has been incorporated into Danish law from Europe which each member state is required to consider as part of their internal judicial process (eg. in Karina’s case – the right not to be deprived of one’s liberty/right to private and family life).

In other words, human rights law is already potentially engaged from the earliest stage of legal proceedings in all cases, including Karina’s. We don’t have to wait to get to Europe to make that argument. 

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WHERE NEXT?

In my previous post, I referred to the case of American teenager, Justina Pelletier who was taken from the care of her family and put into state custody in a manner which reflected Karina’s situation (there are some differences but the result was similar). Since I wrote that post, it has been announced that Justina’s family is to sue Boston Children’s Hospital for its role in detaining her.

In Justina’s case, a court ruling reversing the previous order was needed to secure her final release from the Hospital. However, this ruling came about after Massachusetts Department for Children and Families – which had originally filed for Justina to be placed in the custody of the state – dropped its opposition to her release following widespread publicity.

Using Justina’s case as an example, we can assume that a two-pronged approach is required in order to facilitate Karina’s release:

  • The first prong is to continue an appropriate challenge to the claimed legal validity underpinning the decisions which leave Karina deteriorating rapidly in a “rehabilitation centre” – an institution which shows no signs of rehabilitating her and every sign of prolonging her acute physical and mental distress.
  • The second prong is increased dissemination of information to the media – in Denmark and internationally – so that the apparent injustice inherent in such aggressive state action is highlighted as widely as possible.

Perhaps then Karina’s lonely vigil will cease and she will be able to follow in Justina’s footsteps, back to her own family.

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

 

 

Karina Hansen 2: the Ghost in the Room

February 15, 2016

KarinaHansenStockPicChristmas 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“?

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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.

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Disclosure

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

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

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