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Karina Hansen 6: THE HOMECOMING

October 26, 2016

KarinaHansenStockPicKARINA HANSEN, “PRISONER OF DENMARK”, IS HOME AT LAST.

On Monday 17 October 2016, after three and a half years of incarceration, Karina (who has severe ME – see below) finally returned 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.

During recent months, Karina’s condition had improved slightly and her parents were able to visit her on a regular basis (more detail in my previous post). As a result, meetings took place between those in charge of the Clinic at Hammel where she had been an inmate since February 2013 (see Karina’s Story below for full background) and representatives of Karina’s family. An arrangement for Karina’s return home was agreed whereby her parents would take her home within the next few days and she would remain there for a trial period. If all went well, she would stay on at home permanently.

Significantly, Karina was well enough to sign a document saying that she wanted to go home with her parents. Although she was still unable to speak, she was able to communicate via gestures that she understood the plan and wished it to happen.

The trial period has now passed without incident and so Karina and her family have decided that they want to share the news with their friends and supporters all over the world.

Karina has finally come home.

A request for privacy

It is Karina’s birthday on 7 November, the first one she will have been able to enjoy at home with her family since 2012. Her supporters all over the world will be celebrating with her. There are various groups (on Facebook, for example) with more details of how to get involved.

The Hansen family is very grateful for the huge amount of support and many good wishes which they have received over the last few years. However, this is a time of enormous re-adjustment and they would like to request that, once Karina’s birthday is over, their privacy is respected. Karina has a long way to go with her recovery and her family members need time to adapt to their new situation and reflect on how to process the traumatic events of recent years.

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Regular readers of this blog will be familiar with Karina’s horrifying story (as detailed in my series of posts) and with the often appalling treatment of ME patients generally. However, for new readers, and those needing a reminder, here is a summary:

Karina’s story 

Karina (pictured top left, from her schooldays) 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; patients are frequently unable to access medical treatment with a knowledgeable physician. There is still no recognized 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; 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 make decisions on her behalf. Her condition deteriorated rapidly after her admission to the Clinic.

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 have written a series of blog posts 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.

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Official comments on Karina’s case

Regular readers may recall from earlier articles in this series that I contacted (via an academic colleague who is an expert on Open Justice in European countries) the Danish Ministers for Health and Justice and Hammel Neurocenter. These requests for comment were made in February 2016.

  • The Minister for Health replied two months after the original request and 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 sent standard acknowledgments and eventually responded in July (nearly six months after the original request). The reply simply referred the inquiry back to the Minister for Health.
  • Per Fink replied within two days on behalf of himself and Hammel. In summary, he stated that all patients are there on a voluntary basis and that the clinic is very popular

The Clinic has been contacted again for comment about Karina’s return home. I will update this article when I receive a response.

Where are we now?

The status of Karina’s legal guardian will need to be resolved formally by the Court. Whether or not his role in these proceedings (see previous posts) is subjected to any further scrutiny is another matter. Only time will tell. And there are other issues such as ongoing medical treatment which will still need to be addressed so the story is not necessarily over yet.

However, the question which I asked in Karina Hansen 3: Update March 2016 remains unanswered: “In the absence of any clear explanation, the inevitable question arises: [was] her condition the direct result of a state-orchestrated plan which went horribly wrong?”  Perhaps this question will be addressed if there are any further legal proceedings in relation to these events.

How much damage has been done to Karina and her family remains to be seen. After three and a half years in an institutional environment, there will be considerable adjustments and adaptations to be made. It is to be hoped that plans have been put in place and that appropriate support will be made available to them.

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Significance of Karina’s story for the future

Karina’s story is horrifying. It is a story which should be of the utmost international concern, as a salutary reminder not only of a shocking breach of one young woman’s rights but also of the continuing scandal of the appalling treatment and stigmatization of ME patients all over the world.

It is also of supreme importance that a permanent record of these events is publicly available as reference material for the future. That is why I have invested so much time and effort into researching and writing this series of articles (always whilst battling through my own brain-fog, one of the hallmark symptoms of ME and, for me, the most difficult of all to live with).

But, for now, the international ME community can celebrate the fact that Karina is free at last.

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Acknowledgments

I would like to thank Bente Stenfalk of Borgerretsbevægelsen (Civil Rights Movement Group in Denmark) for keeping me up to date with the Group’s work in assisting Karina and her family.

I would also like to thank Rob Wijbenga from the Netherlands for his support and assistance.

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Disclosure

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

Karina Hansen 5: A little progress?

October 12, 2016

KarinaHansenStockPicRegular readers of this blog will be familiar with Karina’s horrifying story. This update follows on from my series of posts, the most recent of which, Karina Hansen 4: Timeline, Torture and Tragedy, contains more detailed information. For the full history of the case, see Karina Hansen 2: the Ghost in the Room. For new readers, and those needing a reminder of events leading up to this point, this is a summary:

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, in February 2016, Karina remained a de facto prisoner of the state. She had 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. At that time, she did not appear to recognise her own father.

A change in circumstances

In recent weeks (September/October 2016), Karina’s parents have started being allowed by the Clinic to visit her. In theory, there was never any reason why they couldn’t see her during her whole time there. However, shortly after as she was taken to the Clinic by a team of police, doctors and social workers in February 2013, she became unable to speak or communicate and her phone disappeared. As a result, the guardian was appointed by the court (see previous posts) who then took decisions on her behalf. Despite repeated efforts, her family members were then allowed very few visits.

This refusal of visits was on the basis that Karina was extremely distressed and therefore unable to communicate a meaningful response when asked if she wished to see them. However, since I last wrote about Karina’s situation in April 2016, she has begun to be able to communicate more clearly, albeit only in nodding or shaking her head in response to questions. Subsequently, when asked if she wanted to see her parents, she indicated that she did and so the more frequent visits have now begun to take place.

It is not clear what has caused this shift in Karina’s circumstances at the Clinic. In my post Karina Hansen 3, I suggested that she might have been over-medicated; perhaps adjustments have been made to her dosage during recent months and this has increased her capacity to communicate. Interestingly, her phone has also resurfaced. A helpful member of staff at the Clinic, who had given Karina’s parents access to her, assisted her with setting up the address book in her phone again.

Whatever the reason, it seems that there is now a little progress in Karina’s condition. She is still in a wheelchair but becoming able to walk short distances with the aid of a walker.

Still an uncertain future

It is important to emphasise that there is still no clear prognosis, nor any indication of a more permanent change in Karina’s situation. Public speculation will not influence the eventual outcome and her family have requested that respect for their privacy is maintained for the foreseeable future.

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Disclosure

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

TRIBUNAL ORDERS RELEASE OF PACE TRIAL DATA (QMUL v the IC and Matthees)

August 16, 2016

HMCourtTribunalServicePicThe First-Tier Tribunal judgment in this case  (click on that link to read full judgment) has just been published. [Update: the judgment was removed on 1 September for minor corrections. It was reinstated on 7 September but with a different url]. 

QMUL’s appeal has been roundly dismissed and strongly criticized in a majority decision. The Tribunal has therefore decided that the requested data from the PACE trial should be released.

I have just skimmed the 48 pages of the judgment and so have only taken in a small amount so far. However, it appears that this is a defining moment for the international ME community and the PACE Trial itself. Alem Matthees (the original requestor of the data) has done an extraordinary job. Retraction Watch covered the development here.

However, it is important to remember that, in theory,  QMUL could still seek leave to appeal against this judgment to the Upper Tribunal so we cannot yet be certain that this judgment will stand. 

[UPDATE September 2016: QMUL is NOT appealing the decision and the data will be released. Retraction Watch linked to Virology Blog article here].

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Background note for new readers

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.

[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. There are an estimated 20 million patients worldwide although conclusive figures do not exist.

The results of the PACE trial promote psychosocial treatments (Graded Exercise Therapy and Cognitive Behavioural Therapy) which many patients find either ineffective or actively harmful. Constructive biomedical research into ME has been sidelined as a consequence (and has been for decades).

Patients have been using FOIA to try to obtain the trial data in order to understand how the PACE results were achieved. However, most requests have been denied, requestors declared vexatious and, five years on, most of the data is still unavailable.] 

More detailed information on the history and progress of this case can be found in my series of posts on the PACE Trial  (or scroll down right-hand sidebar for “Categories”).

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Disclosure

I have lived with the illness ME since 1981. I currently (2016) have a courtesy academic title at QMUL as Visiting Scholar at the Centre for Commercial Law Studies. I have no connection with the PACE Trial other than as a patient and observer. For more information see About.

 

 

Short Update on the Progress of the PACE Trial Judgment (QMUL v IC and Matthees)

July 15, 2016

HMCourtTribunalServicePicAn inquiry was made yesterday to the First-Tier Tribunal (Information Rights) concerning the progress of the long-awaited judgment in this case. The following response was received almost immediately:

The judge is still drafting the decision and I do not have any indication as to when the final decision will be promulgated.

So – still no news as of 15 July 2016.

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Background note for new readers

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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More detailed information on the history and progress of this case can be found in earlier posts in the PACE Trial category of this blog – see lower right-hand sidebar.

 

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…

View original post 2,950 more words

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

 

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