Update on ICD-11 Beta drafting: Bodily Distress Disorder: emerging proposals: Part One

Post #265 Shortlink: http://wp.me/pKrrB-3cr

Update on ICD-11 Beta drafting: Bodily Distress Disorder: emerging proposals: Part One

This report should be read in conjunction with the caveats at the end of the post, on Page 3.

Part One

The technical work associated with the preparation of ICD-11, the field testing and trials evaluation will need to be completed next year if WHO is going to meet its target of presenting ICD-11 for World Health Assembly approval in May 2015, with pilot implementation by 2016.

Three distinct versions of the ICD-11 classification of Mental and Behavioural Disorders are under development: an abridged version for use in primary care, a detailed version for use in specialty settings and a version for use in research.

The ICD-10 Somatoform Disorders are under revision for all three versions and the primary care and speciality versions are being developed simultaneously.

ICD10-PC, the abridged version of ICD, is used in developed and developing countries and in the training of medical officers, nurses and multi-purpose health workers. Globally, more than 90% of patients with mental health problems are managed by practitioners or health workers in general medical or primary care settings – not by psychiatrists.

Over 400 mental disorders are classified in the speciality version of ICD-10 Chapter V. These are condensed to 26 mental disorders for the primary care version – a list can be found on Page 49 of this book chapter, in Table 2.4.

Each disorder in ICD10-PC provides information on patient presentation, clinical descriptions, differential diagnoses, treatments, indications for referrals and information sheets for patients and families.

A revised list of disorders proposed for inclusion in the forthcoming ICD-11-PHC can be viewed on Page 51, in Table 2.5 [1].

For new and revised disorders included in the primary care version there will need to be an equivalent disorder in the core ICD-11 classification.

Existing Somatoform Disorders in the core ICD-10 version can be viewed here: ICD-10 Version: 2010 browser: Somatoform Disorders or from Page 129 in The ICD-10 Classification of Mental and Behavioural Disorders, Clinical descriptions and diagnostic guidelines.

A chart showing the grouping of the detailed core version categories and the 26 corresponding disorders in ICD10-PC can be found here, see Page 8, for F45 Unexplained somatic complaints and F45  Somatoform disorders (ICD-10): Connections between ICD-10 PC and ICD-10 Chapter V.

Where reports of emerging proposals for ICD-11 have been published by ICD revision working group members, the recommendations within them may be subject to refinement or revision following analysis of focus group studies, external review and multicentre field trials to assess the validity and clinical utility of proposals for application in developed and developing countries, in high and low resource settings and across general, speciality and research settings [2].

Not all proposals for new or revised disorders are expected to survive the field trials.

Two working groups are making recommendations for the revision of ICD-10’s Somatoform Disorders:

A WHO Primary Care Consultation Group (known as the PCCG) has been appointed to lead the development of the revision of ICD10-PC, the abridged classification of mental and behavioural disorders for use in primary care settings. The PCCG is charged with developing and field testing the full set of disorders for inclusion in ICD-11-PHC, for which 28 mental disorders are currently proposed.

The PCCG members are SWC Chan, AC Dowell, S Fortes, L Gask, KS Jacob, M Klinkman (Vice Chair), TP Lam, JK Mbatia, FA Minhas, G Reed, and M Rosendal. The PCCG is chaired by Prof, Sir David Goldberg.

A WHO Expert Working Group on Somatic Distress and Dissociative Disorders (known as the S3DWG) was constituted in 2011 to review the scientific evidence for, and clinical utility of the ICD-10 somatoform and dissociative disorders; to review proposals for the DSM-5 somatic symptom disorders and dissociative disorders categories and to consider their suitability or not for global applications; to review proposals and provide draft content for the somatic distress and dissociative disorder categories in line with the overall ICD revision requirements; to propose entities and descriptions for the classification of somatic distress and dissociative disorders for use in diverse global and primary care settings. External reviewers are also consulted on proposals and content.

The full S3DWG membership list is not publicly available but the group is understood to comprise 17 international behavioural health professionals, of which Prof Francis Creed is a member. The S3DWG is Chaired by Prof Oye Gureje.

Responsibilities of ICD-11 working groups are set out on Page 3 (1.1.) of document [3] in the References. Document [3] also includes information on the ICD-11 field trials, from Page 8 (4.).


1. Goldberg DP. Comparison Between ICD and DSM Diagnostic Systems for Mental Disorders. In: Sorel E, (Ed.) 21st Century Global Mental Health. Jones & Bartlett Learning, 2012: 37-53. Free PDF, Sample Chapter Two: http://samples.jbpub.com/9781449627874/Chapter2.pdf
2. PDF WHO ICD Revision Information Note, Field Testing, June 2012
3. Responsibilities of ICD-11 working groups set out on Page 3 of 2012 Annual Report of the International Union of Psychological Science to the American Psychological Association, Revision of World Health Organization’s ICD-10 Mental and Behavioural Disorders, Pierre L.-J. Ritchie, Ph.D., Main Representative to the World Health Organization, International Union of Psychological Science, January, 2013

Continued on Page 2

Somatic Symptom Disorder in recent journal papers

Post #261 Shortlink: http://wp.me/pKrrB-3ah

Somatic Symptom Disorder in recent journal papers

Somatic Symptom Disorder is also included in Saving Normal: An Insider’s Revolt Against Out-Of-Control Psychiatric Diagnosis, Dsm-5, Big Pharma, and the Medicalization of Ordinary Life (pp. 193-6): Allen Frances, William Morrow & Company (20 May 2013).

Also in Essentials of Psychiatric Diagnosis: Responding to the Challenge of DSM-5 (Chapter 16): Allen Frances, Guilford Press (14 June 2013).

In the June edition of Journal of Nervous and Mental Disorders, Allen Frances, MD, who chaired the Task Force for DSM-IV, discusses his concerns for the loosely defined DSM-5 category, Somatic Symptom Disorder, sets out his suggestions for revising the criteria prior to finalization, as presented to the SSD Work Group chair, in December, and advises clinicians against using the new SSD diagnosis.

http://www.ncbi.nlm.nih.gov/pubmed/23719325

DSM-5 Somatic Symptom Disorder.

Frances A.

Department of Psychiatry, Duke University, Durham, NC.

J Nerv Ment Dis. 2013 Jun;201(6):530-1. doi: 10.1097/NMD.0b013e318294827c. No abstract available.

PMID: 23719325

[PubMed – in process]

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Commentary by Allen Frances, MD, and Suzy Chapman in the May issue of Australian and New Zealand Journal of Psychiatry. The paper discusses the over-inclusive DSM-5 Somatic Symptom Disorder criteria and the potential implications for diverse patient groups. The paper concludes by advising clinicians not to use the new SSD diagnosis.

http://www.ncbi.nlm.nih.gov/pubmed/23653063

DSM-5 somatic symptom disorder mislabels medical illness as mental disorder.

Allen Frances¹, Suzy Chapman²

1 Department of Psychiatry, Duke University 2 DxRevisionWatch.com

Aust N Z J Psychiatry. 2013 May;47(5):483-4. doi: 10.1177/0004867413484525. No abstract available.

PMID: 23653063

[PubMed – in process]

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The April 22 edition of Current Biology published a feature article on DSM-5 by science writer, Michael Gross, Ph.D. The article includes quotes from Allen Frances, MD, and Suzy Chapman on the implications for patients for the application of the new DSM-5 Somatic Symptom Disorder. The article includes concerns for the influence of Somatic Symptom Disorder on proposals for a new ICD category – Bodily Distress Disorder – being field tested for ICD-11 and ICD-11-PHC.

Current Biology 22 April, 2013 Volume 23, Issue 8

Copyright 2013 All rights reserved. Current Biology, Volume  23, Issue  8, R295-R298, 22 April 2013

doi:10.1016/j.cub.2013.04.009

Feature

Has the manual gone mental?

Michael Gross

Full text: http://www.cell.com/current-biology/fulltext/S0960-9822(13)00417-X

PDF: http://download.cell.com/current-biology/pdf/PIIS096098221300417X.pdf

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In this opinion piece, published in the BMJ, March 18, Allen Frances, MD, strongly opposes the new Somatic Symptom Disorder, discusses its lack of specificity, data from the field trials and advises clinicians to ignore this new category.

http://www.ncbi.nlm.nih.gov/pubmed/23511949

The new somatic symptom disorder in DSM-5 risks mislabeling many people as mentally ill.

Frances A.

Allen Frances, chair of the DSM-IV task force

BMJ. 2013 Mar 18;346:f1580. doi: 10.1136/bmj.f1580. No abstract available.

PMID: 23511949

[PubMed – indexed for MEDLINE]

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Further reading

APA Somatic Symptom Disorder Fact Sheet APA DSM-5 Resources

Somatic Chapter Drops Centrality Of Unexplained Medical Symptoms Psychiatric News, Mark Moran, March 1, 2013

Somatic Symptoms Criteria in DSM-5 Improve Diagnosis, Care David J Kupfer, MD, Chair, DSM-5 Task Force, defends the SSD construct, Huffington Post, February 8, 2013

The new somatic symptom disorder in DSM-5 risks mislabeling many people as mentally ill Allen Frances, MD, BMJ 2013;346:f1580 BMJ Press Release

Somatic Symptom Disorder could capture millions more under mental health diagnosis Suzy Chapman, May 26, 2012

Mislabeling Medical Illness As Mental Disorder Allen Frances, MD, Psychology Today, DSM 5 in Distress, December 8, 2012

Why Did DSM 5 Botch Somatic Symptom Disorder? Allen Frances, MD, Psychology Today, Saving Normal, February 6, 2013

New Psych Disorder Could Mislabel Sick as Mentally Ill Susan Donaldson James, ABC News, February 27, 2013

Dimsdale JE. Medically unexplained symptoms: a treacherous foundation for somatoform disorders? Psychiatr Clin North Am 2011;34:511-3. [PMID: 21889675]

Karina Hansen initiatives: A clarification

Post #260 Shortlink: http://wp.me/pKrrB-38n

Karina Hansen initiatives: Clarification notice

I have now published three posts on my site in relation to the Hansen family’s situation:

Something rotten in the state of Denmark: Karina Hansen’s story: http://wp.me/pKrrB-2Xc

(In English)

Human Rights denied: Something rotten in the state of Denmark: Karina Hansen’s story: Update 1: http://wp.me/pKrrB-35o

(Update in English)

Menneskerettighederne nægtet: Noget råddent i staten Danmark: Karina Hansen: Opdater 1: http://wp.me/pKrrB-36e

(Update in English and Danish)

Clarification

Reports and updates on Dx Revision Watch site on the Hansen family’s situation are being published as provided by, and in consultation with, Rebecca Hansen, Chairman, ME Foreningen, Danmark (ME Association, Denmark), or edited from reports as provided.

Dx Revision Watch site has no connection with any petitions or initiatives, or with any social media platforms or other platforms set up to promote petitions or initiatives, or to otherwise raise awareness of the Hansen family’s situation.

All enquiries in relation to any petitions or other initiatives, or social media platforms, or any other platforms associated with them should be addressed directly to the organizers, sponsors or owners responsible for them.

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The official petition launched and sponsored by ME Foreningen, Danmark and approved by the Hansen family can be found here: http://www.ipetitions.com/petition/postcardtokarina/

For more information on the ME Foreningen, Danmark petition go here on Facebook

Website:

ME Foreningen, Danmark
www.me-foreningen.dk

For first report (in English) see: Something rotten in the state of Denmark: Karina Hansen’s story: http://wp.me/pKrrB-2Xc

For more information on the ME Association of Denmark’s postcard campaign go here on Facebook
For information on Bodily Distress Syndrome see Part Two of Dx Revision Watch Post: ICD-11 Beta draft and BDD, Per Fink and Bodily Distress Syndrome
Menneskerettighederne nægtet: Noget råddent i staten Danmark: Karina Hansen: Opdater 1: http://wp.me/pKrrB-36e
Human Rights denied: Something rotten in the state of Denmark: Karina Hansen’s story: Update 1: http://wp.me/pKrrB-35o
Ontkenning van mensenrechten: Iets verrot in de staat van Denemarken: Het verhaal van Karina Hansen: Update 1: http://wp.me/pKrrB-35o
Menschenrechtsverstoß: Etwas ist faul in Dänemark: Karina Hansens Geschichte: Update 1: http://wp.me/pKrrB-35o
Droits de l’Homme: Il y a quelque chose de pourri au royaume du Danemark: l’histoire de Karina Hansen: Update 1: http://wp.me/pKrrB-35o

New Danish and German guidelines for “Bodily distress” and functional disorders published

Post #259 Shortlink: http://wp.me/pKrrB-36F

New Danish and German guidelines for “Bodily distress” and “functional disorders”

Update:

Slide presentation [23 slides in PDF format]

http://www.regionsyddanmark.dk/dwn225587

Or open on Dx Revision Watch site:

Session 4 – Medicinsk uforklarede symptomer – Marianne Rosendal

Medicinsk uforklarede symptomer og funktionelle lidelser

“Medically unexplained symptoms and functional disorders”

Marianne Rosendal, Research Unit for General Practice, Institute of Public Health, Aarhus University

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Related information:

Trygfonden invites applications for funding for research on functional disorders
http://www.kronisktraethedssyndrom.dk/Diverse/Trygfonden.pdf
Trygfonden has allocated 48 million for research on functional disorders. The application deadline for the last 28 million kroner is 6 April 2010.
Lene Toscano får 3,3 mio. kr. til formidling af viden om funktionelle lidelser
Lene Toscano gets 3.3 million kr. for dissemination of knowledge about functional disorders
Specialist in General Medicine Lene Toscano, Aarhus University Hospital, has received 3,336,458 kr. from TrygFonden to examine how best to communicate and share knowledge about functional disorders.

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As previously posted:

In February, I published information on the status of current proposals for revision of ICD-10 “Somatoform Disorders” for the ICD-11 core version, as displayed in the ICD-11 Beta drafting platform, and on proposals for ICD-11-PHC, the abridged primary care version of ICD.

In Part Two of that post, I compiled information on “Bodily Distress Syndrome,” a disorder construct developed by Per Fink and colleagues initially for research studies, now used in clinical practice at The Research Clinic for Functional Disorders and Psychosomatics, Aarhus.

See post #222 ICD-11 Beta draft and Bodily Distress Disorders; Per Fink and Bodily Distress Syndrome Parts One and Two

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Today, I have three new “Bodily Distress Disorders” related items to bring to your attention:

1. The World Psychiatric Association (WPA) is holding its 2013 International Congress in October, in Vienna. Four topics relating to “Bodily Distress Disorders” are being presented:

Bodily Distress Disorders and the new classifications

Bodily Distress Disorders at the work place: prevention and treatment

A stepped care approach for bodily distress disorders: the new interdisciplinary German guideline

Raising the awareness for the health political relevance of Bodily Distress Disorders – a European agenda

Symposia presenters include:

Francis Creed (member of the DSM-5 Somatic Symptom Disorders Work; member of the WHO Working Group on Somatic Distress and Dissociative Disorders, reporting to the International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders; co-author book [1], paper [2]).

Per Fink (The Research Clinic for Functional Disorders and Psychosomatics, Aarhus, Denmark, co-author book [1], paper [3]).

Peter Henningsen (Co-author book [1]).


2] A new German guideline has been published, with summary texts in German and English language:

Neue Leitlinien zu funktionellen und somatoformen Störungen

CLINICAL PRACTICE GUIDELINE Non-Specific, Functional, and Somatoform Bodily Complaints

Rainer Schaefert, Constanze Hausteiner-Wiehle, Winfried Häuser, Joram Ronel, Markus Herrmann, Peter Henningsen. Dtsch Arztebl Int 2012; 109(47): 803−13 [PMID 23341111]

Abstract [in English] here:

New guidelines on functional and somatoform disorders

The S3 guideline “Dealing with patients with non-specific, functional and somatoform bodily symptoms” emphasizes the similarities in the management of the manifold manifestations of so called “medically unexplained symptoms” and gives recommendations for a stepped and collaborative diagnostic and therapeutic approach in all subspecialties and all levels of health care. It has a special focus on recommendations regarding attitude, physician-patient-relationship, communication, the parallelization of somatic and psychosocial diagnostics and a stepped therapeutic approach. The “Evidence-based guideline psychotherapy in somatoform disorders and associated syndromes” provides a differentiated analysis of the current evidence regarding the effectiveness of various psychotherapeutic interventions for the most relevant manifestations of functional and somatoform disorders. In combination, both guidelines pose important advances for treatment quality in Germany, but also illustrate remarkable structural and research deficits.

Abstract [in German] here:

Neue Leitlinien zu funktionellen und somatoformen Störungen

Official summary version texts:

English language version:
S3 Clinical Practice Guideline: Non-specific, Functional, and Somatoform Bodily Complaints” (NFS)
or open PDF on Dx Revision Watch:
S3 Non-specific, Functional and Somatoform Bodily Complaints 2013-01

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German language version:

http://www.aerzteblatt.de/archiv/132847
MEDIZIN: Klinische Leitlinie Nicht-spezifische, funktionelle und somatoforme Körperbeschwerden
Clinical Practice Guideline: Non-specific, functional and somatoform bodily complaints
Dtsch Arztebl Int 2012; 109(47): 803-13; DOI: 10.3238/arztebl.2012.0803
or open PDF on Dx Revision Watch:
Nicht-spezifische, funktionelle und somatoforme Körperbeschwerden

Correspondence in response to summary version:

Letter: Iatrogenic Chronification as a Result of Pseudo Diagnosis
Dr. med. Rainer Hakimi, Stuttgart
In Reply:
Dr. med. Rainer Schaefert
Klinik für Allgemeine Innere Medizin und Psychosomatik, Universitätsklinikum Heidelberg

3] New Danish Association for General Practitioners (DSMA) guide for general practice on functional disorders:

Funktionelle lidelser for Almen Praksis

Ny vejledning sætter fokus på funktionelle lidelser Practicus | April 2013

“New guide focuses on functional disorders”

[Article in Danish]

This article introduces the new Danish Association for General Practitioners (DSMA) guide for general practitioners, published this May. The Working Group for the guide, which included Per Fink, was chaired by Marianne Rosendal.

Access document here in PDF [in Danish]:

Funktionelle lidelser Dansk Selskab for Almen Medicin 2013

or open PDF on Dx Revision Watch: Funktionelle lidelser 2013

Related information:
Lene Toscano får 3,3 mio. kr. til formidling af viden om funktionelle lidelser
Lene Toscano gets 3.3 million kr. for dissemination of knowledge about functional disorders
Specialist in General Medicine Lene Toscano, Aarhus University Hospital, has received 3,336,458 kr. from TrygFonden to examine how best to communicate and share knowledge about functional disorders.

Notes:

ICD-11 Beta drafting platform Bodily Distress Disorder: Mild; Moderate; Severe

“Bodily distress disorder” (BDD) is being proposed as a new category for ICD-11 to replace a number of existing ICD-10 “Somatoform Disorders.”

An alternative construct, called Bodily stress syndrome (BSS), has been put out for international primary care focus group evaluation by the working group for the revision of ICD-10-PHC (the abridged primary care version of ICD-10), and will be undergoing ICD-11 field testing and analysis. There is no public domain information available on where BSS will be field tested or on field trial study design, patient selection, criteria etc.

Although ICD-11 is at the Beta drafting stage and scheduled for WHA approval in 2015, the public version of the Beta drafting platform has yet to define this proposed new BDD category, characterize its three, proposed severities: Mild; Moderate; Severe, or populate any of its “Content Model” parameters.

It has sat there since February 2012, a tabula rasa.

At the time of writing, it remains unspecified which disorders BDD is proposed to capture.

It isn’t clear whether its criteria are proposed to be based on unspecified somatic symptoms, symptom counts or specific constellations of symptoms (eg gastrointestinal, musculoskeletal); whether psychological or behavioural responses are central to its definition; whether it is intended to be inclusive of selected of the so-called “functional somatic syndromes”; whether, like DSM-5’s SSD, its reach would be extended to include patients with somatic symptoms in association with diagnosed diseases, such as cancer or diabetes.

It is not possible to determine from what little information displays in the public version of the drafting platform whether ICD-11 proposes that BDD would mirror or incorporate Per Fink’s construct of “Bodily Distress Syndrome” for definition, criteria, severity specifiers, inclusions, exclusions etc; or whether it intends BDD to also incorporate DSM-5’s “Somatic Symptom Disorder” (and if so, how might this be achieved, since BDS and SSD lack congruency); or whether a unique definition for BDD is being developed and tested specifically for ICD-11.

Until ICD-11 defines BDD, it presents barriers to professional and lay stakeholders inputting meaningful comment on this proposal, which has remained undefined for over a year.

If the working groups advising ICD-11 Revision are putting forward a Per Fink “BDS” model for BDD, or an adaptation of Per Fink’s model, it is not known how WHO classification experts view any proposal that might seek to shift several, discrete, ICD-10 categories with long-standing classification locations outside the Mental and behavioural disorders chapter of ICD, into Chapter 5, and subsume them under a new disorder construct, for which there is no body of evidence for its validity as a construct and safety of application outside research settings.

Note that the ICD-11 Beta draft is a work in progress: proposals for new disorders for ICD-11 are subject to field trial evaluation and approval by Topic Advisory Group Managing Editors, the ICD-11 Revision Steering Group and WHO classification experts.

These two papers and a book chapter discuss emerging proposals for ICD-11 and ICD-11-PHC:

Lam TP, Goldberg DP, Dowell AC, Fortes S, Mbatia JK, Minhas FA, Klinkman MS. Proposed new diagnoses of anxious depression and bodily stress syndrome in ICD-11-PHC: an international focus group study. Fam Pract 2012 [PMID: 22843638]*
Creed F, Gureje O. Emerging themes in the revision of the classification of somatoform disorders. Int Rev Psychiatry 2012;24:556-67. [PMID: 23244611]
Goldberg DP. Comparison Between ICD and DSM Diagnostic Systems for Mental Disorders. In: Sorel E, (Ed.) 21st Century Global Mental Health. Jones & Bartlett Learning, 2012: 37-53 [Free PDF, Sample Chapter Two: http://samples.jbpub.com/9781449627874/Chapter2.pdf]
*SHORT REPORT Kuruvilla, A, Jacob KS. Perceptions about anxiety, depression and somatization in general medical settings: A qualitative study. National Medical Journal of India, vol. 25, no. 6, pp. 332–335, 2012

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What is “Bodily Distress Syndrome”?

The Per Fink et al construct of BDS is a unifying diagnosis that encompasses a group of what are considered to be closely related conditions such as somatization disorder, fibromyalgia, chronic pain disorder, irritable bowel syndrome, chronic fatigue syndrome and ME, multiple chemical sensitivity (MCS) and whiplash associated disorder. On some BDS presentation slides, “Stress and burn out…and many more…” are added to the list.

From the Aarhus Research Clinic website:

“…recent research suggests that the different diagnoses are all subcategories of one single illness, namely BDS…

“…BDS is a new research diagnosis and therefore unfamiliar to many doctors. Most doctors do know the different diagnoses mentioned in the above box, but they are unaware that they can be viewed as one single illness…”

In May 2010, Per Fink and Andreas Schröder, PhD, MD, Aarhus Universitetshospital, Denmark, published the paper, “One single diagnosis, bodily distress syndrome, succeeded to capture 10 diagnostic categories of functional somatic syndromes and somatoform disorders.” [Abstract: PMID: 20403500].

According to the authors of this 2012 EACLPP Conference Abstract: Bodily Distress Syndrome: A new diagnosis for functional disorders in primary care, the concept of “Bodily Distress Syndrome”

is expected to be integrated into the upcoming versions of classification systems.

This 2010 Danish journal article sets out proposals by Fink et al for a new classification:

Journal article: Fink P, Rosendal, M et al. Ny fælles diagnose for de funktionelle sygdomme. [PDF, in Danish]

Note: This proposal by Fink, Rosendal et al has three hitherto discrete ICD-10 classifications, Fibromyalgia (M79.7), IBS (K58) and Chronic Fatigue Syndrome (indexed to G93.3 in ICD-10; classified in ICD-11 Beta draft as an ICD Title term within ICD-11 Chapter 6: Diseases of the nervous system) proposed to be relocated under the ICD-11 mental and behavioural disorders chapter (Chapter 5) and subsumed under a single new disorder classification, “Bodily Distress Syndrome,” along with Neurasthenia (F48.0), Hypochondriasis and some other ICD-10/DSM-IV Somatoform Disorders.

Page 1837

Proposed new classification on left;  Current classifications on right:

Danish Journal paper Fink P

Here, the same proposal set out in English, from a Danish presentation:

(Note: MS type = Musculoskeletal)

Slide Presentation Two [PDF, in Danish; some slides in English]

Bodily Distress Syndrome (BDS), og helbredsangst  Udvikling af diagnoserne, assessment og forskning på området, Oplæg ved Sundhedspsykologisk, Årsmøde 2011

Slide #11 of 97

Fink: Proposed New Classification

For further information on proposals for “Bodily Distress Disorder” for ICD-11 and on Per Fink’s “Bodily Distress Syndrome” see Dx Revision Watch post #222: ICD-11 Beta draft and Bodily Distress Disorders; Per Fink and Bodily Distress Syndrome Parts One and Two

References

1. Medically Unexplained Symptoms, Somatisation and Bodily Distress: Developing Better Clinical Services. Creed, Francis; Henningsen, Peter; Fink, Per, Cambridge University Press, 2011. Sample pages on Google Books
2. Creed F, Gureje O. Emerging themes in the revision of the classification of somatoform disorders. Int Rev Psychiatry 2012;24:556-67. [Abstract: PMID: 23244611]
3. Fink P, Schröder A. One single diagnosis, bodily distress syndrome, succeeded to capture 10 diagnostic categories of functional somatic syndromes and somatoform disorders. J Psychosom Res. 2010 May;68(5):415-26. [Abstract: PMID: 20403500]
4. ICD-11 Beta drafting platform: Bodily Distress Disorder: Mild; Moderate; Severe. Proposed revision to ICD-10 Somatoform Disorders

Menneskerettighederne nægtet: Noget råddent i staten Danmark: Karina Hansen: Opdater 1

Post #258 Shortlink: http://wp.me/pKrrB-36e

Clarification

Reports and updates on Dx Revision Watch site on the Hansen family’s situation are being published as provided by, and in consultation with, Rebecca Hansen, Chairman, ME Foreningen, Danmark (ME Association, Denmark), or edited from reports as provided by Ms Hansen.
Dx Revision Watch site has no connection with any petitions or initiatives, or with any social media platforms or other platforms set up to promote petitions or initiatives, or to otherwise raise awareness of the Hansen family’s situation. The use of any links to content on Dx Revision Watch does not imply endorsement of, or association with any initiatives other than the ME Foreningen, Danmark (ME Association, Denmark) Postcard to Karina Campaign.
All enquiries in relation to petitions or other initiatives, social media platforms, or any other platforms associated with them should be addressed directly to the organizers, sponsors or owners responsible for them.

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”Har ME-patienter ikke ret til at vælge, hvilken behandling vi ønsker at modtage? Har vi ikke ret til besøgende, når vi er på hospitalet?”

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Karina HansenOpdater 1: Menneskerettighederne nægtet

On May 11, on the eve of ME Awareness week, I published an account, of the plight of the Hansen family, in Denmark.

Karina Hansen is 24. She has been bedridden with severe ME since 2009.

In February, this year, Karina was forcibly removed from her bedroom and committed to Hammel Neurocenter.

Her parents have not seen Karina for over three months.

The Hansen family and their lawyer are still waiting for legal documentation and answers to their questions:

Which authority gave the order to remove Karina from her home against her will and by whom was it authorized?

What legislation was used to detain her as an involuntary patient in a hospital?

Why are the parents being denied visits?

Two updates on the case have been released, this week. These are being published, as provided, and with permission of the Hansen family and their lawyer.

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Første rapport:
Noget råddent i staten Danmark: Karina Hansen: http://wp.me/pKrrB-2Xc

Verdenserklæringen om Menneskerettighederne: http://www.unric.org/da/information-om-fn/15

Status på Karinas sag – 24.5.13

Af Rebecca Hansen

Følgende tekst er godkendt af familien.

Karina er forsat indlagt på Hammel Neurocenter. Lægen Jens Gyring har givet mundtlig besked til familien om, at indlæggelsen vil forsætte i lang tid – måske et år. Vi har ikke set noget bevis for, at Karina har fået det bedre.

Karinas forældre har en fuldmagt, som giver dem ret til at træffe beslutninger for Karina, også omkring hendes behandling. Denne fuldmagt ignoreres.

Fuldmagten blev oprettet i maj 2012. Karinas praktiserende læge erklærede hende psykisk rask 2 gange i maj 2012.

Sundhedsstyrelsen (SST) påstår, at Karinas advokat ikke er hendes advokat, da de nu mener, at hun ikke var habil, da hun antog advokaten i maj 2012. Advokaten har repræsenteret Karina siden maj 2012 og fik aktindsigt i Karinas sag på dette grundlag. Dernæst oplyser SST, at advokaten havde fuldmagt i 2012 ved første mislykkede forsøg på at få Karina tvangsindlagt (03.05.12) men at fuldmagten ikke er gældende for episoden med hendes endelige tvangsfjernelse og indlæggelse i februar 2013.

Psykiater Nils Balle Christensen skriver, at Karina er voksen og myndig til at træffe ”her og nu beslutninger”, og at de på Hammel Neurocenter ikke gør noget imod hendes vilje. Men samtidig, mener Holstebro Kommune at Karina har brug for en værge og Statsforfatningen Midtjylland har fået til opgave at udpege en værge til hende og hermed umyndiggøre hende.

ME Foreningen kontaktede Patientkontoret den 29. april 2013 for at få navn på Karinas patientrådgiver, idet Foreningen ønsker at bidrage med viden om sygdommen og vil herudover forsøge at skaffe en udenlandsk ME ekspert til landet, der kan tilse Karina. Svaret var at ”sagen er overgivet til Juridisk kontor i Region Midtjylland.”

Karinas forældre og jeg prøvede at besøge Karina den 12. maj, men blev nægtet adgang. Du kan læse om dette på ME Foreningens facebook under noter.

Nils Balle Christensen skriver, at der ikke er besøgsforbud, men Karinas forældre må alligevel fortsat ikke besøge hende. Der gives en mundlig besked til forældrene, at ”juristerne” vil oprette et ”dokument” omkring ”besøgsrestriktionerne”. Denne kan Karinas forældre forvente at få fremsendt i løbet af 7-14 dage.

Vi har ringet til Karinas mobil som hun har med på hospitalet mange gange, men den går direkte på voicemail.

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Et besøg hos Karina – et spørgsmål om menneskerettigheder

Af Rebecca Hansen
ME-patient
icerebel62@hotmail.com

Den 12. maj besluttede Karinas forældre og jeg igen at prøve at besøge Karina på Hammel Neurocenter. Karina er en alvorligt syg dansk ME-patient, som er blevet tilbageholdt på Hammel Neurocenter siden den 12. februar 2013, og i denne periode har hendes forældre ikke fået lov til at besøge eller tale med hende.

Karinas advokat har for nylig fået en meget begrænset adgang til nogle af dokumenterne i Karinas sag ved hjælp af offentlig aktindsigt. Af dette materiale fremgik det, at det faktisk ikke er tilladt i Danmark at forhindre pårørende i at besøge deres familie på hospitalet, og at menneskerettighederne har høj prioritet.

Karina forældre var blevet fortalt, at de skulle mødes med Nils Balle Christensen (NBC), en psykiater fra Forskningsklinikken for Funktionelle Lidelser, for at tale om betingelserne for besøg, før de kunne se deres datter. Da Karinas søster, Janni, besøgte Karina i april, fik Janni instruktioner om, hvad hun måtte sige og ikke sige til Karina. Forældrene fik slet ikke lov at komme ind, fordi de fik at vide, at de først skulle mødes med NBC for at afgøre betingelserne for besøg.

Men nu vidste vi, at det ikke er legalt at have sådanne restriktioner på besøg, så vi besluttede at prøve at se Karina søndag den 12. maj – på Mors Dag og den internationale mærkedag for ME.

Før jeg fortæller om besøget, vil jeg fortælle om den kontakt, som NBC har haft med Karina og hendes familie.

Nils Balle Christensen blev involveret i Karinas sag i maj 2012, efter Karinas advokat havde forhindret hendes fjernelse efter psykiatrisk lovgivning. Han blev præsenteret for familien, og hans opgave var at udarbejde en behandlingsplan til Karina. I løbet af sommeren 2012 besøgte NBC Karinas forældre adskillige gange med henblik på at etablere en behandlingsplan. I denne periode ønskede NBC ikke at samarbejde med Karinas advokat, og NBC leverede ikke en skriftlig behandlingsplan. Karinas forældre har aldrig modtaget nogen skriftlige instrukser for Karinas pleje og der var ingen kritik af den pleje, de gav Karina. Jeg var til et møde med NBC og Karinas forældre i 2012, hvor NBC fortalte moderen, at hun gjorde et godt stykke arbejde. NBC kom med et tilbud om at indlægge Karina, men ikke med en plan om hvad der ville ske, når hun blev indlagt. De fik heller ikke nogen forklaring på, hvorfor man ikke kunne behandle Karina i hjemmet. Karinas forældre turde ikke acceptere en ukendt behandling fra en læge, der aldrig før har behandlet (eller set) en alvorlig syg ME-patient. Af mange årsager stolede Karinas forældre ikke på NBC, og kontakten med NBC blev afbrudt i starten af efteråret 2012. Karinas forældre valgte at betale for en privat læge og en diætist til at hjælpe Karina.

Karinas forældre troede, at NBCs involvering med Karina nu var afsluttet. Men den begrænsede adgang, som Karinas advokat nu har opnået ved offentlig aktindsigt afslører, at NBCs engagement langt fra var overstået.

Dokumenterne viser, at der var aktivitet i Karinas sag imellem Sundhedsstyrelsen og henholdsvis Holstebro Kommune, Holstebro politi samt til NBC, efter at hans kontakt til forældrene var stoppet.

Desuden afslører disse papirer, at der var en forespørgsel til Ministeriet for Sundhed og Forebyggelse om retten til at forhindre pårørende i at besøge familiemedlemmer på et hospital. Den 21. december 2012 sendte ministersekretæren for Ministeriet for Sundhed og Forebyggelse et 5-siders svar, der forklarer, at menneskerettighederne har høj prioritet (vejer meget tungt).

Men i NBCs skrivelse af 12. februar 2013 til Karinas forældre står der:

”Det er besluttet, at Karina, pga. sin tilstand, ikke må have besøg de første 14 dage. Det vil herefter blive vurderet, om hun er i stand til at modtage besøg.”

Med disse nye oplysninger om menneskerettighederne i hånden, besluttede Karinas forældre og jeg os den 12. maj for at se, om der stadig var et forbud imod eller begrænsninger på at besøge Karina på Hammel Neurocenter.

Vi ønskede ikke, at personalet skulle føle sig truet af os på nogen måde, så vi havde på forhånd aftalt, at hvis vi fik at vide, vi ikke kunne besøge Karina, ville vi respektere dette, men vi ville stille en masse spørgsmål om, hvorfor dette forbud / denne begrænsning var oprettet.

På Hammel præsenterede Karinas forældre sig for personalet og bad om tilladelse til at se deres datter. Der blev svaret ”nej”, og at det skulle have været aftalt telefonisk med lægen. Jeg spurgte, om der var et besøgsforbud. Det blev der svaret ”nej” til. Så spurgte jeg, om der var restriktioner, men det blev ikke besvaret. I stedet svarede medarbejderen, at hun ville ringe til Jens Gyring, som er overlægen på stedet. De bad os om at vente. Medarbejderne på Hammel Neurocenter var høflige og venlige, men det var tydeligt, at de var beklemte ved vores tilstedeværelse.

Et øjeblik senere vendte sygeplejersken tilbage med svar fra Jens Gyring, at forældrene først skulle have et møde med NBC, inden de kunne se deres datter. Vi diskuterede denne begrænsning, og Karinas forældre bad om en skriftlig forklaring på, hvorfor de skulle have et møde med NBC, før de kunne se deres datter, og hvad hensigten med mødet ville være.

Jeg understregede, at det ikke er lovligt at forhindre forældre i at besøge sit barn og prøvede at vise dem udtalelsen fra Ministeriet for Sundhed og Forebyggelse. En anden medarbejder brød ind og sagde, at denne diskussion skulle tages med lægerne og ikke med dem.

I mellemtiden var Jens Gyring blevet kontaktet igen og havde sagt, at man skulle spørge Karina om hun vil have besøg. En ny sygeplejerske deltog i vores diskussion og sagde: ”Jeg har lige været inde ved Karina og fortalt, at I er her og spurgt om hun vil have besøg, og hun rystede bare på hovedet.”

Meget interessant, at der pludselig ikke var noget besøgsforbud, men at det nu var op til Karina…

Til det svarede jeg, at vi gerne ville have en hel sætning fra Karina for at sikre, at hun forstod spørgsmålet. Vi ønskede at høre hende sige, at hun ikke ville se sin mor og far. Vi kunne ikke rigtig vide, om hun forstod spørgsmålet, eller om hun virkelig troede på, at de var her efter 3 måneder. Desuden bærer Karina normalt ørepropper, så måske hørte hun ikke engang spørgsmålet.

Karinas mor sagde, at hun gerne vil høre ordene fra Karinas egen mund. At hun gerne ville se Karina og høre hendes svar. Og hvis Karina bad hende om at gå, ville hun straks gå igen.

Personalet insisterede på, at Karina havde svaret.

Her skal man huske på, at det sidste Karina sagde til sin mor den 13. februar var, da hun ringede til sin mor og sagde: ”Hvordan kommer jeg ud herfra. Jeg kan ikke klare det.” – Hvad er der sket de sidste 3 måneder? Ønsker Karina virkelig ikke at se sine forældre? Hvis dette er tilfældet, hvad er så årsagen? Hvilken begrundelse har lægerne givet Karina for, at forældrene ikke besøger hende? Vi er overladt til at gætte svarene på disse spørgsmål.

Det var tydeligt, at forældrene ikke ville få lov til at se Karina og selv høre, at Karina ikke ønskede et besøg. Men vi fik de ansatte til at love at få NBC til at sende forældrene en skriftlig erklæring om, hvorfor de skulle have et møde med ham, før de kunne se deres datter, og hvad mødet ville handle om. De lovede også at oplade Karinas mobiltelefon og give den til hende. Så forlod vi Neurocenteret. Karinas mor havde tårer i øjnene og sagde: ”Jeg troede virkelig, at jeg ville få hende at se i dag.”

Efter hjemkomsten skrev Karinas forældre en mail til Nils Balle Christensen og bad igen om på skrift at få at vide, hvorfor de ikke må se Karina, og hvad dagsordenen er for det møde, han kræver, før de kan se hende.

Til dette svarede NBC, at der ikke er besøgsforbud. Og siden Karinas forældre ikke ønsker at mødes med NBC, kan de i stedet mødes med overlæge Jens Gyring: ”hvor der kan laves skriftlige aftaler om fremtidige besøg og telefonkontakt med mere”.

Er det ikke stadig et besøgsforbud, indtil deres betingelser er opfyldt? Hvordan er det forskelligt fra et besøgsforbud, indtil forældrene mødes med NBC? Hvilken ret har de til at stille disse betingelser?

Få dage senere fik Karinas forældre at vide af Jens Gyring, at det ville være op til advokaterne at lave en skriftlig aftale om besøg. Dette kunne tage 2 uger.

I mellemtiden kan vi tænke over, hvad denne situation betyder for andre ME-patienter og deres pårørende i Danmark. En alvorligt syg ME-patient får tilkendt en psykiater, som aldrig før har behandlet en alvorligt syg ME-patient. Psykiateren kommer fra en klinik, der har fravalgt at samarbejde med internationale ME eksperter (brev fra september 2012 og referat fra mødet den 8. oktober 2012). Psykiateren ønsker ikke at samarbejde med patientens advokat eller oplyse noget på skrift om den behandling, han vil give.

Når ME-patienten og de pårørende beslutter, at de ikke ønsker den behandling, som denne psykiater tilbyder, så samarbejder de danske myndigheder for at fjerne ME-patienten fra hjemmet – tydeligt imod hendes vilje – og isolere hende fra hendes pårørende og advokat.

Psykiateren, der har ansvaret for Karina, er også ansvarlig for alle ME-patienter i Danmark – så er det fremtiden for alle ME-patienter og deres familier i Danmark?

Har ME-patienter ikke ret til at vælge, hvilken behandling vi ønsker at modtage? Har vi ikke ret til besøgende, når vi er på hospitalet?

Ja, der er virkelig noget råddent i Danmarks rige.

Hvis jeg har misforstået noget i denne historie, så vil jeg være glad for at høre en forklaring fra de involverede parter.

Rebecca Hansen
ME-patient
Icerebel62@hotmail.com

+++
For first report (in English) see:

Something rotten in the state of Denmark: Karina Hansen’s story: http://wp.me/pKrrB-2Xc

For more information on the ME Association of Denmark’s postcard campaign go here on Facebook
For information on Bodily Distress Syndrome see Part Two of Dx Revision Watch Post: ICD-11 Beta draft and BDD, Per Fink and Bodily Distress Syndrome
Menneskerettighederne nægtet: Noget råddent i staten Danmark: Karina Hansen: Opdater 1: http://wp.me/pKrrB-36e
Human Rights denied: Something rotten in the state of Denmark: Karina Hansen’s story: Update 1: http://wp.me/pKrrB-35o
Ontkenning van mensenrechten: Iets verrot in de staat van Denemarken: Het verhaal van Karina Hansen: Update 1: http://wp.me/pKrrB-35o
Menschenrechtsverstoß: Etwas ist faul in Dänemark: Karina Hansens Geschichte: Update 1: http://wp.me/pKrrB-35o
Droits de l’Homme: Il y a quelque chose de pourri au royaume du Danemark: l’histoire de Karina Hansen: Update 1: http://wp.me/pKrrB-35o

Human Rights denied: Something rotten in the state of Denmark: Update 1

Post #257 Shortlink: http://wp.me/pKrrB-35o
Clarification notice
Reports and updates on Dx Revision Watch site on the Hansen family’s situation are being published as provided by, and in consultation with, Rebecca Hansen, Chairman, ME Foreningen, Danmark (ME Association, Denmark), or edited from reports as provided by Ms Hansen.
Dx Revision Watch site has no connection with any petitions or initiatives, or with any social media platforms or other platforms set up to promote petitions or initiatives, or to otherwise raise awareness of the Hansen family’s situation. The use of any links to content on Dx Revision Watch does not imply endorsement of, or association with any initiatives other than the ME Foreningen, Danmark (ME Association, Denmark) Postcard to Karina Campaign.
All enquiries in relation to petitions or other initiatives, social media platforms, or any other platforms associated with them should be addressed directly to the organizers, sponsors or owners responsible for them.

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“…Do ME patients in Denmark not have the right to choose which treatment we want to receive? Do we not have the right to visitors when we are in the hospital?”

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Karina Hansen

Update 1: Human Rights denied

On May 11, on the eve of ME Awareness week, I published an account of the plight of the Hansen family, in Denmark. Karina Hansen is 24. She has been bedridden with severe ME since 2009.

In February, this year, Karina was forcibly removed from her bedroom and committed to Hammel Neurocenter.

Her parents have not seen Karina for over three months.

The Hansen family and their lawyer are still waiting for legal documentation and answers to their questions:

Which authority gave the order to remove Karina from her home against her will and by whom was it authorized?

What legislation was used to detain her as an involuntary patient in a hospital?

Why are the parents being denied visits?

Two updates on the case have been released, this week. These are being published, as provided, and with permission of the Hansen family and their lawyer.

+++
For the first report see:

Something rotten in the state of Denmark: Karina Hansen’s story: http://wp.me/pKrrB-2Xc

For reports in Danish see:

Menneskerettighederne nægtet: Noget råddent i staten Danmark: Karina Hansen: Opdater 1: http://wp.me/pKrrB-36e

The Universal Declaration of Human Rights: https://www.un.org/en/documents/udhr/

Status on Karina’s Case – May 24th, 2013

By Rebecca Hansen
Chairman, ME Foreningen, Danmark (ME Association, Denmark)

The following text has been approved by the family.

Karina is still hospitalized at Hammel Neurocenter. Dr. Jens Gyring gave a verbal message to the family that this could continue for a long time, perhaps a year. We have not seen any evidence that Karina is getting better.

Karina’s parents have a power of attorney that gives them the right to make decisions for Karina, also about her treatment. But this is ignored.

The power of attorney was made in May 2012. Karina’s general practitioner declared her psychologically healthy twice, in May 2012.

The Danish Board of Health claims that Karina’s lawyer is not her lawyer, as they now state that Karina was not competent when she hired her lawyer in May 2012. The lawyer has represented Karina since May 2012 and received access to Karina’s case at that time on the basis that he had authority as her lawyer. Then, The Danish Board of Health informed her lawyer, that it is true that he had authority at the time of the first failed attempt to section Karina (May 3, 2012), but that the power of attorney does not apply to the incident in February 2013, when Karina was forcibly removed and hospitalized.

The psychiatrist, Nils Balle Christensen, writes that Karina is an adult and has the ability to make “here and now decisions” [“her og nu beslutninger”] and that Hammel Neurocenter is doing nothing against her will. But at the same time, Holstebro Kommune believes that Karina needs a guardian and Statsforfatningen Midtjylland has been asked to appoint one for her. This will disempower Karina completely and leave all decisions up to her guardian.

The ME Association, Denmark, contacted the Patient Office on April 19, 2013 to ask for the name of Karina’s patient advisor. We wished to inform the advisor about Karina’s illness and to offer to bring an ME expert to Denmark to examine Karina. The answer from the Patient Office was that “the case is handed over to the Legal Office in Region Midtjylland.”

Karina’s parents and I tried to visit Karina on May 12, 2013, but we were denied access to her. You can read more about our attempt on the ME Association’s Facebook page under Noter.

Nils Balle Christensen writes that there is not a ban on visits, but Karina’s parents are still not allowed to visit her. A verbal message was given to Karina’s parents that  “the laywers” will create a “document” about the “visit restrictions.” Karina’s parents expect to get that in the next 7-14 days.

Karina has her mobile phone at the hospital and we have tried to call it many times, but it always goes directly to voice mail.

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A Visit to Karina – a Question of Human Rights

Rebecca Hansen
ME patient
Icerebel62@hotmail.com

On May 12, Karina’s parents and I decided once again try to visit Karina at Hammel Neurocenter. Karina is a severely ill Danish ME patient being held at Hammel Neurocenter since February 12, 2013, during which time her parents have not been allowed to visit or talk to her.

Karina’s lawyer has recently received a very limited access to some of the paperwork in Karina’s case by using the Public Records Act. This revealed that it is actually not permitted in Denmark to prevent relatives from visiting their family members in the hospital and that human rights have priority.

Karina’s parents had been told that they must meet with Nils Balle Christensen (NBC), a psychiatrist from the Research Center for Functional Disorders and Psychosomatics [Aarhus], to talk about the conditions of visitation before they could see their daughter. When Karina’s sister, Janni, visited Karina in April, Janni was given instructions about what she could and could not say to Karina. The parents were not allowed in at all because they were told they first needed to meet with NBC to decide the conditions of visitation.

But now we knew that it is not legal to have this restriction on visits, so we decided to try to see Karina on Sunday May 12 – Mother’s Day and International ME Awareness Day.

Before I tell about the visit, I will tell about the contact NBC has had with Karina and her family.

Nils Balle Christensen became involved with Karina’s case in May 2012 after Karina’s lawyer prevented her removal under a psychiatric law. He was introduced to the family and his job was to help make a treatment plan for Karina. During the summer of 2012, NBC visited the family several times with the purpose of making a treatment plan for Karina. During this time, NBC did not want to cooperate with Karina’s lawyer and NBC did not deliver a written treatment plan. Karina’s parents never received any written instructions for Karina’s care and there was no criticism of the care they were giving Karina.

I was at a meeting with NBC and Karina’s parents in August 2012 where NBC told the mother that she was doing a good job. NBC came with an offer to hospitalize Karina, but not a plan about what would happen when she was hospitalized. They also did not receive an explanation as to why they could not treat Karina at home. Karina’s parents did not dare to agree to an unknown treatment from a doctor who has never before treated (or even seen) a severely ill ME patient. For many reasons, Karina’s parents did not trust NBC and contact with NBC was stopped in the early fall of 2012. Karina’s parents chose to pay for a private doctor and a dietician to help Karina.

Karina’s parents believed that NBC’s involvement with Karina was now over. But the limited access that Karina’s lawyer has now obtained under the Public Records Act reveals that NBC’s involvement was far from over.

The paperwork shows that there was activity in Karina’s case between from the Board of Health to Holstebro county and the Holstebro police, as well as to NBC after his contact with her parents had stopped.

Furthermore, these papers reveal that there was an inquiry to the Ministry for Health and Prevention [Ministeriet for Sundhed og Forebyggelse] about the right to prevent relatives from visiting family members at a hospital. On December 21, 2012, the Minister secretary sent a 5-page answer that explains that human rights have priority (weigh very heavily).

But in NBC’s letter to Karina’s parents on Februay 12, 2013, it says:

“It has been decided that because of Karina’s condition, she may not have visitors the first 14 days. After that, it will be evaluated if she is able to have visits.”

With this new information about human rights in hand, Karina’s parents and I decided on May 12 to see if there was still a ban or restrictions on visitation to Karina at Hammel Neurocenter.

We did not want the staff to feel threatened by us in any way, so we had agreed ahead of time that if we were told we could not visit Karina, we would respect this, but would ask a lot of questions about why this ban/restriction was being made.

At Hammel, Karina’s parents introduced themselves to the staff and asked for permission to see their daughter. The answer was No and we were told that they should have made an appointment with the doctor before coming. I asked if there was a ban on visits and they answered No, not a ban. Then I asked if there were restrictions, but did not receive an answer. Instead, a staff member said that she would call Jens Gyring, the head doctor at the center. They asked us to wait. The staff at Hammel Neurocenter were polite and friendly, but it was obvious that they were not comfortable with us being there.

A few minutes later, the nurse returned and said that Jens Gyring’s answer was that the parents must first have a meeting with NBC before they could see their daughter. We discussed this restriction and Karina’s parents asked for a written explanation as to why they had to have a meeting with NBC before they could see their daughter and what the intent of the meeting would be.

I pointed out that it was not legal to prevent parents from seeing their child and tried to show them the statement from the Ministry of Health and Prevention [Ministeriet for Sundhed og Forebyggelse]. A second staff member broke in to say that this discussion must be taken up with the doctors and not them.

In the meantime, Jens Gyring was contacted again and said that Karina should be asked if she wanted to have a visit. A new nurse joined our discussion and said: “I have just been in with Karina and said you were here and asked if she wanted a visit and she just shook her head.”

Very interesting that suddenly there was no ban, but now it was up to Karina…

To that I said that we would like to have a whole sentence from Karina to make sure she understood the question. We wanted to hear her say that she didn’t want to see her mom and dad. We couldn’t really know if she understood the question or if she really believed they were there after three months. Also, Karina usually wears earplugs, so maybe she did not even hear the question.

Karina’s mom said that she would like to hear the words from Karina’s own mouth. That she would like to see Karina and hear Karina’s answer. And if Karina told her to leave, she would go away immediately.

The staff insisted that Karina has answered.

Remember, the last thing Karina said to her mother was on February 13, when Karina called her mother and said: “How do I get out of here? I can’t take this.” – What has happened in the last three months? Does Karina really not want to see her parents? And if so, why not? What have the doctors told Karina about why her parents are not visiting? We can only guess the answers to these questions.

It was clear that her parents would not be allowed to see Karina and hear for themselves that she didn’t want a visit. But we did get the staff to promise to have NBC send them a written statement about why they had to have a meeting with him before they could see their daughter and what the meeting would be about. They also promised to charge up Karina’s cell phone and give it to her. Then we left the [Hammel] Neurocenter. Her mom had tears in her eyes and said, “I really thought I was going to see her today.”

When her parents got home, they wrote a mail to NBC and once again asked for a written explanation as to why they may not see Karina and what the agenda would be for the meeting that he requires before they can see her.

NBC answered that there is no ban on visits. And since Karina’s parents don’t want to meet with NBC, then they can meet with the head doctor Jens Gyring instead: “where there can be made written agreements about future visits, telephone contact and more.”

Isn’t this still a ban until their conditions are met? How is this any different from a ban on visits until the parents meet with NBC? What right do they have to make this condition?

A few days later, Karina’s parents were told by the doctor Jens Gyring that it would be up to the lawyers to make a written agreement about visitation. This could take two weeks.

In the meantime, we can think about what this situation means for other ME patients and their families in Denmark. A severely ill ME patient is assigned a psychiatrist that has never treated a severely ill ME patient before. The psychiatrist comes from a clinic that has chosen not to work with international ME experts (letter from September 2012 and minutes from our meeting in October 2012).

The psychiatrist does not wish to work with the patient’s lawyer or give any written information about the treatment he will give. When the ME patient and the family decide they do not want the treatment offered by this psychiatrist, then the Danish authorities work together to remove the patient from her home – quite obviously against her will – and isolate her for her family and her lawyer.

The psychiatrists in charge of Karina are also in charge of all ME patients in Denmark – so is this the future for all ME patients and their families in Denmark?

Do ME patients in Denmark not have the right to choose which treatment we want to receive? Do we not have the right to visitors when we are in the hospital?

Yes, something is very rotten in the state of Denmark.

If I have misunderstood something in this story, then I will be happy to hear an explanation from the involved parties.

Rebecca Hansen
ME patient
Icerebel62@hotmail.com

+++
For the first report see:

Something rotten in the state of Denmark: Karina Hansen’s story: http://wp.me/pKrrB-2Xc

For more information on the ME Association of Denmark’s postcard campaign go here on Facebook
For information on Bodily Distress Syndrome see Part Two of Dx Revision Watch Post: ICD-11 Beta draft and BDD, Per Fink and Bodily Distress Syndrome
Human Rights denied: Something rotten in the state of Denmark: Karina Hansen’s story: Update 1: http://wp.me/pKrrB-35o
Menneskerettighederne nægtet: Noget råddent i staten Danmark: Karina Hansen: Opdater 1: http://wp.me/pKrrB-35o
Ontkenning van mensenrechten: Iets verrot in de staat van Denemarken: Het verhaal van Karina Hansen: Update 1: http://wp.me/pKrrB-35o
Menschenrechtsverstoß: Etwas ist faul in Dänemark: Karina Hansens Geschichte: Update 1: http://wp.me/pKrrB-35o
Droits de l’Homme: Il y a quelque chose de pourri au royaume du Danemark: l’histoire de Karina Hansen: Update 1: http://wp.me/pKrrB-35o