Category Archives: ICD-11 Beta Draft

BDS, BDDs, BSS, BDD unscrambled

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Post #268 Shortlink:
http://wp.me/pKrrB-3fA

BDS, BDDs, BSS, BDD and ICD-11, unscrambled

There are two WHO convened working groups charged with making recommendations for the revision of ICD-10′s Somatoform Disorders: the Primary Care Consultation Group (known as the PCCG) and the Expert Working Group on Somatic Distress and Dissociative Disorders (known as the S3DWG).

ICD-11 is being promoted as an open and transparent process but to date, neither group has published progress reports for stakeholder consumption and neither group has published its emerging proposals in public access journals.

Content populated in the public version of the ICD-11 Beta drafting platform sheds little light on proposals.

Consequently, there is considerable confusion about what is being recommended by the two groups, whether consensus has been reached, and what proposals will progress to field testing during the coming year.

ICD-11 Revision has been asked to clarify when it intends to define and characterize its current proposals within the Beta drafting platform.

The notes below set out some of what is known about the two groups’ emerging proposals, how they diverge and how they compare with DSM-5′s Somatic Symptom Disorder and with Fink et al’s Bodily Distress Syndrome.

Caveat: the proposals of the two ICD-11 working groups may have undergone revision and refinement since emerging proposals were published, in July and December, last year; the two groups may or may not have reached consensus over how this proposed new construct for ICD-11 should be defined and characterized or its inclusions, exclusions and differential diagnoses, or what name it should be given.

What is Bodily Distress Syndrome (BDS)?

Bodily Distress Syndrome is the name given to a disorder construct developed by Per Fink and colleagues, Aarhus University, that is already in use in Danish research studies and clinical settings [1].

BDS is described by its authors as “a unifying diagnosis that encompasses a group of closely related conditions such as somatization disorder, fibromyalgia, irritable bowel syndrome and chronic fatigue syndrome.”

Per Fink and colleagues are lobbying for BDS to be integrated into forthcoming classification systems and adopted as a diagnosis by primary care practitioners.

Their proposal is for reclassifying somatoform disorders, pain disorder, neurasthenia and the so-called functional somatic syndromes, including fibromyalgia, irritable bowel syndrome and chronic fatigue syndrome, under a new classification, Bodily Distress Syndrome. They consider these should be treated and managed as subtypes of the same disorder with CBT, GET, “mindfulness therapy” and in some cases, antidepressants.

The PDF format slide presentation in reference [2] will give an overview of BDS and there is more information and links in an earlier post, in reference [3].

Is Fink et al’s Bodily Distress Syndrome construct the same as DSM-5′s SSD?

No, Bodily Distress Syndrome is a different construct to DSM-5′s Somatic Symptom Disorder.

Psychological or behavioural characteristics are not part of the BDS criteria.

For BDS, physical symptoms are central to the diagnosis, which is based on identification of symptom patterns (not symptom count) from four body systems: Cardiopulmonary/autonomic arousal; Gastrointestinal arousal; Musculoskeletal tension; General symptoms. There is a “Modest” (single-organ type) and a “Severe” (multi-organ type).

If the symptoms are better explained by another disease, they cannot be labelled BDS.

The graphic below compares mutli-organ Bodily Distress Syndrome with DSM-5′s Somatic Symptom Disorder, as the draft criteria had stood, in May 2012.

Note the defining characteristics of the DSM-5 SSD construct: the SSD criteria call for various psychobehavioural characteristics in response to distressing somatic symptoms and the requirement that the symptoms are “medically unexplained” is not central to the diagnosis.

The diagnosis can be made in the presence of one or more unspecified somatic symptoms associated with general medical conditions and diagnosed disease, like cancer, diabetes or angina, in the so-called “functional somatic syndromes” or in complaints with unclear etiology.

Compare Fink et al’s BDS with DSM-5′s SSD, in the table, below:

Depending on screen size/resolution, graphic may not display in full. Click on the image and the image file will load. Graphic: Suzy Chapman

Bodily Distress Syndrome comparison with Somtatic Symptom Disorder

In the context of the drafting of ICD-11 what are Bodily distress disorders?

The PCCG primary care group that is advising on the revision of the abridged version of ICD-11 was proposing, in 2012, that several, discrete disorders for inclusion in ICD-11-PHC would sit under a disorder group heading, “Body distress disorders” like this:

Body distress disorders:

15 Bodily stress syndrome [Replaces F45 Unexplained somatic symptoms]
16 Acute stress reaction
17 Dissociative disorder
18 Self-harm

In the context of ICD-11, and in the context of the proposals of the primary care group, at least as they stood last year, the term “Body distress disorders” is a heading for a disorder group, not a disorder category, per se.

For ICD-11 primary care group proposals, it is “Bodily stress syndrome” that is proposed to replace the ICD-10 primary care version F45 Unexplained somatic symptoms diagnosis and incorporate DSM-5′s SSD [4].

Is the primary care group’s Bodily stress syndrome the same as Fink et al’s Bodily Distress Syndrome?

No, they are not the same construct.

In 2012, the group were still refining their proposed definition and criteria but the characteristics of their proposed new disorder for ICD-11 might be described as a hybrid of DSM-5′s SSD and Fink et al’s BDS.

It has some SSD-like psychological or behavioural symptoms within its criteria (which BDS has no requirement for) but it also requires multiple symptoms from one or more of four body systems to make the diagnosis.

Like BDS, BSS is conceptualized as a condition related to symptom patterns or clusters of autonomic hyperarousal and the proposals used the same body systems and symptom lists as the Fink et al criteria [5].

Whilst DSM-5′s SSD makes no assumptions about etiology, BSS is intended to facilitate identification and management of patients with persistent, disabling symptoms not attributable to well-defined medical disease without imposing the additional qualification of being “medically unexplained” – but, “If the symptoms are accounted for by a known physical disease this is not BSS.” In this respect, too, it accords with Fink et al’s BDS.

So the primary care group’s BSS might be considered a mash-up of features from Fink et al’s BDS construct but with selected of SSD’s defining characteristics.

What isn’t clear, is whether the proposals of the primary care group, which are inclusive of the somatoform disorders and what would have been termed MUS, under ICD-10, are also intended to capture the so-called functional somatic syndromes, CFS, IBS and FM, as the Fink et al construct does.

Paper [5] gives no exclusions or differential diagnoses for CFS, IBS or FM and is silent on the matter of which of the so-called functional somatic syndromes the proposals would extend to, and what the implications would be for the future classification of these three ICD entities for ICD-11.

With Marianne Rosendal on the working group, the group may be under pressure to recommend a “pure” Fink et al BDS model, definition and criteria set. However, we might also anticipate internal pressure for the accommodation of DSM-5′s SSD within any proposals for revision of the ICD’s Somatoform Disorders and Neurasthenia, in order to reflect the commitment for “harmonization” between DSM-5 and ICD-11 categories and disorder descriptions.

Given that SSD and BDS are divergent constructs this presents the groups advising ICD-11 with a dilemma.

It is unlikely they could call the disorder BDS for the purposes of ICD-11, if their construct did not closely mirror Fink et al’s BDS; they cannot plump for a BDS mirror if they seek to accommodate, or partially accommodate the DSM-5′s SSD construct.

Lack of evidence in support of the BSS construct’s validity and its implications is beyond the scope of this post, but proposing a primary care disorder group name of “Body distress disorders” under which it is proposed would sit a Bodily Stress Syndrome plus three additional, discrete disorders, when the terms Bodily distress disorder and Bodily Distress Syndrome are terms already in use in several countries and where the latter has a specific definition and criteria, already in use in Denmark, is a curious proposal given the potential for diagnostic and nosological confusion [5].

In the context of the drafting of ICD-11 what are Bodily distress disorders?

Currently, in the ICD-11 Beta drafting platform, four discretely coded disorders are listed under:

Bodily distress disorders, and psychological and behavioural factors associated with disorders or diseases classified elsewhere

Bodily distress disorder
Severe bodily distress disorder
Psychological and behavioural factors associated with disorders or diseases classified elsewhere
Hypochondriasis (illness anxiety disorder) [Currently assigned dual parents]

The proposed construct of Bodily distress disorder and its two severity specifiers has remained undefined and uncharacterized for over a year in the public version of the Beta draft.

The second ICD-11 working group making recommendations for the revision of the ICD-10 Somatoform Disorders is the WHO Expert Working Group on Somatic Distress and Dissociative Disorders (known as the S3DWG).

Last year, this group’s proposals were for a disorder named Bodily distress disorder [6].

Is the S3DWG group’s Bodily distress disorder the same as Fink et al’s Bodily Distress Syndrome?

No, they are not congruent.

The BDD framework has a high degree of congruency with DSM-5′s Somatic symptom disorder construct but may differ from SSD in the characterization of its severities. It also lacks DSM-5′s Predominately Pain specifer.

The S3DWG group says it prefers the term Bodily distress syndrome over DSM-5′s Somatic symptom disorder.

The proposed framework would subsume six ICD-10 categories from F45.0 to F45.9, and F48.0 Neurasthenia under a single new category, called Bodily distress disorder. This corresponds with the SSD construct.

BDD is proposed to be defined as a disorder characterized by high levels of preoccupation related to bodily symptoms and their significance; or persistent fear of having an undiagnosed physical illness; unusually frequent or persistent medical help-seeking or reassurance; avoidance of normal activities for fear of damaging the body, with associated distress and impairment – so it accords, here, with SSD.

By eliminating assumptions about causality, the diagnosis of BDD does not exclude troublesome somatic symptoms in the presence of a co-occurring physical health condition – so again, concordance here with SSD.

The proposal does not have congruency with the 2012 proposals of the PCCG primary care group or with Fink et al’s Bodily Distress Syndrome, since both require symptom clusters from bodily system groups; and in the case of Fink et al’s Bodily Distress Syndrome, disproportionate or maladaptive psychological and/or behavioural responses do not form part of the criteria.

BDD’s severities appeared to be proposed to be characterized according to assessment of degree of disability and level of distress and impairment, rather than on the basis of psychobehavioural symptom counts, somatic symptom counts, or symptom clusters within specified body systems; or a combination of degree of impairment and number of body system groups affected. But the text lacks sufficient clarity around severity characterization.

At least as described in December, BDD was a fairly close fit for concordance with the DSM-5 SSD construct [7].

In summary:

It is not known what definition and characterization ICD-11 will be basing its field testing on for this proposed new disorder, but it does intend field testing, this year, and possibly into 2014.

There is still no definition or characterization for BDD in the public version of the ICD-11 Beta drafting platform.

Body distress disorders was the name being proposed, last year, for a primary care disorder group section, containing four discrete and largely unrelated categories, not a discrete disorder, per se. The discrete category being proposed by the primary care group to replace F45 Unexplained somatic symptoms and subsume F48 Neurasthenia was Bodily stress syndrome.

The discrete category being proposed by the S3WG group is called Bodily distress disorder.

Last year, BSS (PCCG primary care group) was not congruent with DSM-5′s SSD construct but shared some psychobehavioural features with SSD and some disorder model, somatic symptom cluster and body system features with Fink et al’s Bodily distress syndrome.

Last year, BDD (S3DWG) had a high degree of congruency with DSM-5′s SSD.

For an in depth report on proposals see previous post #265:

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

Key documents:

1. 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].
2. Slide presentation [PDF format] Somatoform disorders – functional somatic syndromes – Bodily distress syndrome. Need for care and organisation of care in an international perspective – EACLPP Lecture, Prof. Per Fink, MD, Ph.D, Dr.Med.Sc. www.functionaldisorders.dk
3. Part Two of post: ICD-11 Beta draft and Bodily Distress Disorders; Per Fink and Bodily Distress Syndrome: 
http://wp.me/pKrrB-2Dz
4. 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
5. Lam TP et al. Proposed new diagnoses of anxious depression and bodily stress syndrome in ICD-11-PHC: an international focus group study. Fam Pract. 2013 Feb;30(1):76-87. [Abstract: PMID:22843638]
6. ICD-11 Beta drafting platform, public version: Bodily distress disorders, and psychological and behavioural factors associated with disorders or diseases classified elsewhere
7. 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]

Opdater 2: Menneskerettighederne nægtet: Noget råddent i staten Danmark: Karina Hansen

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Opdater 2: Menneskerettighederne nægtet: Noget råddent i staten Danmark: Karina Hansen

Post #267 Shortlink:
http://wp.me/pKrrB-3gj

”I slår mig ihjel.”

Karen

Rebecca Hansen, lay advocate to the Hansen family, has issued a further update on Karina’s situation.

Dansk udgave

Svært ME syg patient tvinges til eksperimentel behandling

Af Rebecca Hansen, formand for ME Foreningen

”I slår mig ihjel” gentager svært ME-syge Karina Hansen til sygeplejerskerne, når hun tvinges til kontroversiel og udokumenteret behandling, som kaldes GET (gradvist øget træning).

Karina, 24 år, har Myalgisk Encephalomyelitis (ME), en neuro-immun sygdom, som siden 1969 har haft World Health Organization koden G93.3.

ME-eksperterne savner stadig svar på mange aspekter af sygdommen, men der er bred enighed om, at ME-patienter lider af en dysfunktion i evnen til at producere energi og genvinde kræfter efter motion og enhver form for anstrengelse. Dette kaldes post-exertional malaise – eller PEM. Forskning har vist, at GET forværrer tilstanden hos størstedelen af let ramte ME-patienter.

I Belgien behandlede statsfinancierede referencecentre let angrebne ME-patienter med GET, men en evaluering af disse centre viste, at GET ikke var effektiv, og at patienterne faktisk kunne arbejde MINDRE efter de havde fået behandlingen. Den belgiske sundhedsminister har officielt udtalt, at GET ikke skal betragtes som en kurativ behandling af ME.

Karina har svær ME, og der foreligger ikke forskning for virkningen af GET for denne patientgruppe. Der kan derfor kun være tale om eksperimentel behandling, når svært syge ME-patienter behandles med GET. Det er ikke lovligt at tvinge patienter til eksperimentel behandling i Danmark. Lægerne som står for denne behandling er psykiaterne Nils Balle Christensen (NBC) og Per Fink (PF) fra Forskningsklinikken for Funktionelle Lidelser (FFL). Det er fuldstændig uacceptabelt, at danske myndigheder tillader, at NBC og PF tvangsbehandler Karina med disse metoder.

Karina har været tvangsindlagt siden den 12. februar2013 og tvinges hver dag til at modtage GET. I 2011 gav Karina overfor embedslægen udtryk for, at hun ikke ønskede at modtage GET behandling. Hun græd, da hun fortalte embedslægen, at hun ønskede at få det bedre, og at hun havde prøvet GET tidligere, men at det altid forværrede hendes tilstand. Embedslægen fastslog, at Karina var mentalt rask og selv i stand til at træffe beslutninger omkring sin behandling. Derfor blev det besluttet, at hun ikke skulle tvinges til at modtage en behandling, hun ikke ønskede. Men denne beslutning blev negligeret, da Karina blev tvangsindlagt i februar og nu hver dag må underlægges den GET behandling, hun ikke ønsker.

Karina er så syg, at hun plejer kun at have kræfter nok til at sige få ord ad gangen. Hun klarer bedst spørgsmål, der kan besvares med et ja eller nej og som ikke er for komplicerede. Når sygeplejerskerne presser hende for meget, bliver hun vred og græder. Nogle gange samler hun kræfter til at sige ”I slår mig ihjel”, men behandlingen fortsætter. Hvis hun ikke siger noget, tolkes det med, at hun samtykker til behandlingen.

Jeg blev oplyst om følgende, da jeg d. 31. Maj 2013 deltog i et møde med Karinas forældre, hendes søster, en ergoterapeut som behandler Karina og en læge fra Hammel Neurocenter, hvor Karina er indlagt.

Formålet med mødet var at diskutere en liste med de besøgsrestriktioner, som Nils Balle Christensen (NBC) havde sendt til Karinas forældre. NBC har ansvaret for Karinas behandling og Per Fink (PF) er hans overordnede. Karinas forældre har fået besked om, at forudsætningen for at de kan besøge Karina var afholdelse af dette møde. På det tidspunkt havde de ikke fået tilladelse til at besøge deres datter siden indlæggelsen d. 12. februar.

Herunder er hovedpunkterne fra mødet.

• Karinas mor (forældre) fulgte ME eksperters anbefalinger, da Karina blev passet hjemme. NBC og PF negligerer disse anbefalinger.

• Mens Karina blev passet hjemme, havde hun selv mulighed for at bestemme sin egen behandling, men NBC og PF tillader ikke at, hun vælger hvilken behandling hun modtager.

• Da Karina blev indlagt blev al medicin taget fra hende. Da hun var hjemme, tog hun kortisol og de kosttilskud som hendes egen læge anbefalede. Personalet vidste ikke hvilken medicin hun fik før sin indlæggelse.

• Karina nægter at tage nogen form for piller eller medicin på hospitalet.

• Nils Balle Christensen og Per Fink mener ikke Karina har ME. Den læge som deltog i mødet den 31. maj modtager sin information om Karina og ME fra NBC og PF. Denne læge siger, at ME er et ”fantasifoster”, og læger som tror på ME er ”narrøve.” (NBC og PF har officielt ansvaret for alle ME patienter i Danmark)

• Karina har 4 gange fået stillet ME diagnosen: 2 gange af ME specialister, 1 gang på et reumatologisk hospital og 1 gang af en psykiater.

• NBC og PF er ikke interesseret i at samarbejde med ME-specialister eller nogen andre uden for deres område. Mit tilbud om at lade en ME ekspert undersøge Karina blev afvist.

• NBC og PF mener, at Karina her en psykisk sygdom, og at hun sandsynligvis har haft den i et stykke tid, inden hun blev totalt sengeliggende. Lægen vi talte med på mødet, sagde at det var fejlbehandling at behandle Karina efter ME-eksperters anvisning, og at det havde forværret hendes tilstand. Lægen kunne ikke fortælle familien hvilken psykisk sygdom, de mener Karina har eller hvad der eventuelt har udløst den, men de er overbeviste om, at behandlingen for denne mystiske psykiske sygdom er GET. Vi bør huske på, at der INGEN beviser er for at Karina har eller nogensinde har haft en psykisk sydom, idet hun altid har været erklæret psykisk rask igennem sit sygdomsforløb.

• De skriftlige besøgsrestriktioner fastslog, at Karinas forældre kun måtte besøge deres datter, hvis de giver udtryk for at de støtter behandlingen (GET), som Karina tvinges til at modtage. De har ikke før kunne få lov at besøge hende, fordi der var mistanke fra lægerne om, at de ville omtale behandlingen negativt overfor Karina. En sygeplejerske skal altid være til stede under besøg, for at sikre at Karina ikke ”blev påvirket i en uhensigtsmæssig retning”

• Karina var ekstrem syg den første uges tid efter sin indlæggelse på Hammel Neurocenter. Stress og overanstrengelse forværrer ME, og Karina brugte en masse energi for at prøve at få hjælp, da de indlagde hende. Gentagne gange fortalte hun dem, at hun ikke ønskede at være der, og hun foretog 26 telefonopkald for at få hjælp inden hendes telefon gik død, inklusiv et opkald til politiet. Hendes tilstand er forbedret i forhold til den første uge af indlæggelsen, men der er ikke sket nogen signifikant forbedring i forhold til da hun var hjemme. Hun kan stadig ikke gå og har stadig udpræget blodmangel.

• På spørgsmålet om hvorvidt Karina kunne tale i hele sætninger svarede lægen: ”Hun kan og har hele tiden sagt ”I slår mig ihjel” -Det er en hel sætning”.

• For nylig blev hun sat på selvmords overvågning, fordi hun havde grædt meget. Det var aldrig en bekymring, da hun var derhjemme.

• Statsforvaltningen Midtjylland har udpeget en værge for Karina, så nu er det op til ham at bestemme, hvad der skal ske med Karina.

Efter mødet skrev jeg et brev til Karinas værge og informerede ham om ME og Karinas forhistorie. Jeg håber, han forstår alvoren i opgaven og gennemlæser alt materiale, før han bestemmer hvad der er bedst for Karina. Jeg ved ikke, om jeg fremover vil modtage flere informationer om Karina.

Det er psykiaterne Nils Balle Christensen, Per Fink og Forskningsklinikken for Funktionelle Lidelser, der står for Karinas tvungne eksperimentelle behandling med GET. Deres udokumenterede påstand om, at ME kan behandles med GET ligger bag denne afsporede ”forskning”. De støttes af danske myndigheder. Her ligger ansvaret for, hvad der er sket for Karina og hendes familie.

Men personalet på Hammel Neurocenter, hvor Karina er indlagt, er ikke helt uskyldige. De følger blindt de ordrer som NBC og PF udsteder. Da jeg hørte at Karina var blevet indlagt, håbede jeg på at lægerne der ville være åbne for, at lære mere om ME og derved være i stand til at hjælpe Karina. Jeg forventede at de ville tage de laboratorieprøver, som anbefales i den internationale diagnoseprotokol ICC.

Jeg forventede, at de dermed ville kunne udrede og behandle hende for nogle af de ting prøverne ville vise, så som hormonelle ubalancer, immundysfunktioner, lav blodvolumen, kroniske infektioner, etc. ME-patienter har mange af disse ubalancer og når de behandles bedres almentilstanden som regel.

Jeg havde håbet, at personalet havde været indstillet på at vide mere om Karinas sygdom og reflektere over hvilken sygdom ME egentlig er. Men efter mit besøg på Hammel d. 31. maj har jeg mistet dette håb. Alle ordrer om Karinas behandling dikteres af PF og NBC og udføres kritikløst af personalet. Jeg håber, at dette personale overvejer en ekstra gang, om de ønsker medansvaret for den behandling Karina nu modtager.

Karina har brug for at være et sted med kendskab til og respekt for ME, og hvor der tages højde for de skånehensyn svært syge ME-patienter kræver. Forskningsklinikken for Funktionelle Lidelser har åbenlyst ikke nogen forståelse for sygdommens art og har ingen interesse i at lære noget som går imod deres egne teorier, om at ME er et ”fantasifoster”. De burde ikke have ansvar for NOGEN ME-patienter. Så længe Nils Balle Christensen og Per Fink bestemmer, er Hammel Neurocenter ikke et godt sted for Karina at være.

Karinas advokat, ME Foreningen og tusindvis af mennesker, som kender Karinas situation fortsætter med at kæmpe for hendes rettigheder.

Rebecca Hansen, chairman ME Association, Denmark

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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Previous posts

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

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-36e

(Update in English and Danish)

Karina Hansen initiatives: A clarification: 
http://wp.me/pKrrB-38n

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Links

Website for the ME Association, Denmark, ME Foreningen, Danmark www.me-foreningen.dk

Official petition launched and sponsored by the ME Association of Denmark, and approved by the Hansen family:
http://www.ipetitions.com/petition/postcardtokarina/
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
Opdater 2: Menneskerettighederne nægtet: Noget råddent i staten Danmark: Karina Hansen:
http://wp.me/pKrrB-3gj
Update 2: Human Rights denied: Something rotten in the state of Denmark: Karina Hansen’s story:
http://wp.me/pKrrB-390
Update 2: Ontkenning van mensenrechten: Iets verrot in de staat van Denemarken: Het verhaal van Karina Hansen:
http://wp.me/pKrrB-390
Update 2: Menschenrechtsverstoß: Etwas ist faul in Dänemark: Karina Hansens Geschichte:
http://wp.me/pKrrB-390
Update 2: Droits de l’Homme: Il y a quelque chose de pourri au royaume du Danemark: l’histoire de Karina Hansen:
http://wp.me/pKrrB-390

Update 2: Human Rights denied: Something rotten in the state of Denmark: Karina Hansen’s story

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Post #266 Shortlink:
http://wp.me/pKrrB-390

Update 2: Human Rights denied: Something rotten in the state of Denmark: Karina Hansen’s story

She tells the nurses, ‘You are killing me.’ 

Karen

Rebecca Hansen, lay advocate to the Hansen family, has issued a further update on Karina’s situation.

Experimental treatment forced on a severely ill ME patient

By Rebecca Hansen, chairman ME Association, Denmark

“You are killing me” is what severely ill Danish ME patient, Karina Hansen, has repeatedly said to her nurses while she is being forced to receive a controversial and unproven treatment known as Graded Exercise Therapy.

Karina, 24, has Myalgic Encephalomyelitis (ME) which is a neuro-immune illness and has had a World Health Organisation code of G93.3 since 1969.

Much is still unknown about ME, but ME experts agree that ME patients have a dysfunction in their ability to produce energy and to recover from exercise or any type of exertion.

This is called post-exertional malaise or PEM. Studies have shown that GET makes the vast majority of mildly affected ME patients worse.

In Belgium, state-funded Reference Centers treated mildly affected ME-patients with GET, but an evaluation of these centers showed that GET was not effective and patients could actually work LESS after getting the treatment. The Belgian Minister of Health officially declared that GET should not be regarded as a curative therapy for ME.

Karina has severe ME and no studies of GET have been done on this patient group. Therefore treating severely ill ME patients with GET can only be seen as experimental.

It is illegal to force experimental treatment on patients in Denmark.

The doctors who have ordered this treatment are psychiatrists Nils Balle Christensen and Per Fink from The Research Clinic for Functional Disorders and Psychosomatics (RFD). It is completely unacceptable that Danish authorities are allowing the psychiatrists to treat Karina in this way.

Karina has been held against her will since February 12, 2013, and is forced to undergo GET every day. In 2011, Karina made it clear to the Medical Officer that she did not want GET. She cried when she told him that she wanted to get better, and had tried GET before, but it always made her worse.

The Medical Officer accepted that Karina was mentally healthy and capable of making her own decisions about her treatment. It was agreed she would not be forced to have any unwanted treatment. But this agreement has been broken when Karina was committed. She is now forced to endure GET every day.

Karina is so ill that she usually only has the energy to speak one word at a time. She does best with yes/no questions and questions that do not require complex thought. When her nurses push her too much, she gets angry and cries. Sometimes she summons the energy to say “You are killing me.” But the treatment goes on. If she says nothing, they assume she is cooperating.

I received this information on May 31, 2013, when I attended a meeting with Karina’s parents, her sister, an occupational therapist who treats Karina and a doctor from Hammel Neurocenter, where Karina is being held. The goal of the meeting was to discuss the list of restrictions about visits that Nils Balle Christensen (NBC) had sent to Karina’s parents. NBC is in charge of Karina’s care and Per Fink (PF) is his boss.

Karina’s parents were told they had to have this meeting is they wanted to see Karina. They had not been allowed to see her since she was committed.

Below are the major points from that meeting.

• Karina’s mother (parents) followed the recommendations of ME experts when caring for Karina at home. NBC and PF are ignoring those recommendations.

• At home Karina was allowed to decide her own treatment, but NBC and PF do not allow her to choose her treatment.

• When Karina was committed, all medication was stopped. The staff did not know what medicine she had been taking before she has committed. At home she took cortisol and supplements that were recommended by a doctor.

• Karina refuses to take any supplements or medicine of any kind at the hospital.

• Nils Balle Christensen and Per Fink do not believe that Karina has ME. The doctor we met on May 31 receives his information about Karina and ME from NBC and PF. This doctor said that ME is a “figment of the imagination” and doctors who believe in ME are “imbeciles.” (NBC and PF are officially in charge of all ME patients in Denmark.)

• Karina has been diagnosed with ME four times: twice by ME specialists, once by a rheumatology hospital and once by a psychiatrist.

• NBC and PF are not interested in working with ME specialists or anyone from outside their facility. I offered to have an ME expert come and examine Karina, but that was turned down.

• NBC and PF believe that Karina has a mental illness and probably had it for some time before she became bedbound. The doctor we spoke with said that treating Karina after the recommendations of ME specialists was malpractice and had made her worse. He would not tell the family the name of the illness they think Karina has, or what they think started it, but they were sure that the treatment for this mysterious mental illness was GET. Remember, there is NO evidence that Karina is or ever was mentally ill, as she was always declared mentally healthy.

• The written restrictions about visitations stated that Karina’s parents would only be allowed to see her if they would appear to support the treatment (GET) that Karina is being forced to have. They had not been allowed to visit before, because there was a suspicion that they would say something negative about the treatment. A nurse must be with them at all times to make sure Karina was not “affected in an inappropriate direction.”

• Karina was extremely ill the first week or so after she was committed to Hammel Neurocenter. Stress and overexertion make ME worse and Karina used a lot of energy trying to get help when they committed her. She repeatedly told them she did not want to be there and she made 26 phones calls for help, including one to the police, before her phone died. She has improved in comparison to that first week, but there is no significant improvement from when she was at home. She still cannot walk and she is still very anemic.

• When asked if Karina could speak in complete sentences, the doctor told us: She says and has always said, “You are killing me.” That is a whole sentence.

• They had recently put her on suicide watch because she had been crying a lot. This was never a concern when she was at home.

• The State Administration for Central Jutland (Statsforvaltningen Midtjylland) has appointed a legal guardian for Karina so it is now it is up to him to decide what is best for Karina.

After the meeting, I wrote to Karina’s guardian, telling him about ME and some of Karina’s history. I hope he will take his job seriously by reading all the material in the case and do what is best for Karina. I don’t know if I will receive information about Karina in the future.

Nils Balle Christensen, Per Fink and The Research Clinic for Functional Disorders and Psychosomatics are ordering the forced, experimental treatment of GET on Karina Hansen.

Their unfounded theory that ME can be cured by GET is behind this misguided “research.” And their actions are supported by the Danish government. These are the parties that should be held responsible for the actions taken against Karina and her family.

But the staff at Hammel Neurocenter are not completely innocent. They are blindly following the orders given by NBC and PF. When I first heard Karina would be at Hammel Neurocenter I had hope, because I thought they might be open to learning about ME and that maybe they could help her. I had hoped that they would do the testing that is recommended in the International Consensus Criteria for ME. I thought they might find some things they could treat her for – such as hormone imbalances, immune dysfunction, low blood volume, chronic infections, etc.

Many imbalances are found in ME patients and when those things are treated, quality of life can improve. I had hoped that the staff would be open to learning about the disease that Karina has and do some critical thinking into what ME is. But after my visit to the hospital on May 31, 2013, these hopes are completely crushed.

All orders about Karina’s care come from NBC and PF and the staff is uncritically following them. I hope the staff at Hammel will think hard about what is being done to Karina and decide if they want to be a part of it.

Karina needs is to be in a place that understands ME and respects the special needs of severely-ill ME patients. The Research Clinic for Functional Disorders and Psychosomatics clearly has no understanding of ME and is not interesting in learning anything that goes against their theory that ME is “a figment of the imagination.” They should not be in charge of ANY ME patient. And as long Nils Balle Christensen and Per Fink are giving the orders, Hammel Neurocenter is an unfit place for Karina.

Karina’s lawyer, the ME Association, Denmark, and thousands of people who are aware of Karina’s situation continue to fight for her rights.

Rebecca Hansen, chairman ME Association, Denmark

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.

+++

Previous posts

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

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-36e

(Update in English and Danish)

Karina Hansen initiatives: A clarification: 
http://wp.me/pKrrB-38n

+++

Links

Website for the ME Association, Denmark, ME Foreningen, Danmark www.me-foreningen.dk

Official petition launched and sponsored by the ME Association of Denmark, and approved by the Hansen family:
http://www.ipetitions.com/petition/postcardtokarina/
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
Opdater 2: Menneskerettighederne nægtet: Noget råddent i staten Danmark: Karina Hansen:
http://wp.me/pKrrB-390
Update 2: Human Rights denied: Something rotten in the state of Denmark: Karina Hansen’s story:
http://wp.me/pKrrB-390
Update 2: Ontkenning van mensenrechten: Iets verrot in de staat van Denemarken: Het verhaal van Karina Hansen:
http://wp.me/pKrrB-390
Update 2: Menschenrechtsverstoß: Etwas ist faul in Dänemark: Karina Hansens Geschichte:
http://wp.me/pKrrB-390
Update 2: Droits de l’Homme: Il y a quelque chose de pourri au royaume du Danemark: l’histoire de Karina Hansen:
http://wp.me/pKrrB-390

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

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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. 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

Pages: 1 2 3

Bodily Distress Syndrome: Coming soon to a GP Management Pilot near you…

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Post #264 Shortlink:
http://wp.me/pKrrB-3dG

NHS England: Pilot of Enhanced GP Management of Patients with Medically Unexplained Symptoms

NHS Barnet Clinical Commissioning Group

Pilot of Enhanced GP Management of Patients with Medically Unexplained Symptoms

Click link for PDF document  Pilot of Enhanced GP Management of Patients with MUS

or


http://tinyurl.com/k44xg7d

Note the use of the term “Bodily Distress Syndrome (BDS)” despite the lack of a body of evidence to support the validity, reliability, safety and clinical utility of the application of the BSD construct* in primary care.

Note also, the list of illnesses under the definition of “MUS”: Chronic Pain, Fibromyalgia, Somatic Anxiety/Depression, Irritable Bowel Syndrome, Chronic Fatigue Syndrome, Myalgic Encephalomyelitis, Post-viral Fatigue Syndrome.

*For information on the Fink et al concept of “Bodily Distress Syndrome” see Part Two of Dx Revision Watch Post: ICD-11 Beta draft and BDD, Per Fink and Bodily Distress Syndrome

Extracts:

22 May 2013

NHS England

PILOT OF ENHANCED GP MANAGEMENT OF PATIENTS WITH MEDICALLY UNEXPLAINED SYMPTOMS

NHS Barnet Clinical Commissioning Group

Background

Medically Unexplained Symptoms

Definition

The term ‘medically unexplained symptoms (MUS)’ are physical symptoms that cannot be explained by organic pathology, which distress or impair the functioning of the patient. Patients often present with physical symptoms that cannot be explained even after thorough investigation. Other terms used to describe this patient group include: Functional Somatic Syndrome (FSS), Illness Distress Symptoms (IDS), Idiopathic Physical Symptoms (IPS), Bodily Distress Syndrome (BDS) and Medically Unexplained Physical Symptoms (MUPS).

Symptoms and Diagnosis

Symptoms

Headache
Shortness of Breath, palpitations
Fatigue, weakness, dizziness
Pain in the back, muscles, joints, extremity pain, chest pain, numbness
Stomach problems, loose bowels, gas/bloating, constipation, abdominal pain
Sleep disturbance, difficulty concentrating, restlessness, slow thoughts
Loss of appetite, nausea, lump in throat
Weight change

Diagnosis

Chronic Pain
Fibromyalgia
Somatic Anxiety/Depression
Irritable Bowel Syndrome
Chronic Fatigue Syndrome
Myalgic Encephalomyelitis
Post-viral Fatigue Syndrome

PROJECT AIMS AND OBJECTIVES

• To pilot a commissioner initiated, enhanced GP management service for patients with MUS in primary care. Refer to Figure 1 for details.

• The pilot will be carried out at selected Barnet GP practices (approximately 15) managing a minimum of 10 patients with MUS over 12 months.

• To identify patients with MUS using an electronic risk stratification tool the ‘Nottingham Tool’ with a review of the generated list at a multidisciplinary (MDT) GP practice meeting for the final patient selection.

• To enhance post-graduate GP training by providing education and training workshops and focused work group meetings on the management of MUS.

• The project will also test the assertion that identification and management of MUS would result in savings to commissioning budgets.

PROJECT OUTCOMES AND BENEFITS

There are several benefits that could be realised from implementing this project. These are as follows:-

• Improved outcomes for patients with MUS, better patient experience

• Improved quality of life

• Improved GP-Patient relationship

• Reduced GP secondary and tertiary referrals

• Reduced unnecessary GP and hospital investigations and prescribing of medicines

• Reduced GP appointments and out of hours appointments to A&E or GP

CONCLUSIONS

There is a high prevalence of patients with medically unexplained symptoms presenting to primary and secondary care services. Patients with MUS are high healthcare service users having a major impact to our local health economy and health outcomes. GPs are well placed to manage MUS patients as this patient group are 50% more likely to attend primary care. We believe that our proposed enhanced management of care by the GP will result in both market and non-market benefits. This proposal has gained approval from the NHS Barnet CCG Primary Care Strategy and Implementation Board, QIPP Board and the NCL Programme Board for the 2013/14 financial year…

etc.

Related material

+++
IAPT NHS Long Term Conditions and Medically Unexplained Symptoms

IAPT NHS Medically Unexplained Symptoms

PHQ-15

The “Nottingham Tool”

Click link for PDF document   Medically Unexplained Symptoms (MUS): A Whole Systems Approach in Plymouth

In partnership with:

Plymouth Hospitals NHS Trust, Sentinel Healthcare Southwest CIC, Southwest Development Centre, September 2009

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Click link for PDF document   Medically Unexplained Symptoms (MUS) A whole systems approach
NHS Commissioning Support for London
July 2009 – December 2010

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Psychologists’ perspectives on the diagnostic classification of mental disorders: Results from the WHO-IUPsyS Global Survey

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Psychologists’ perspectives on the diagnostic classification of mental disorders: Results from the WHO-IUPsyS Global Survey

Post #263 Shortlink:
http://wp.me/pKrrB-3dj


http://www.ncbi.nlm.nih.gov/pubmed/23750927
Int J Psychol. 2013 Jun 10. [Epub ahead of print]

Psychologists’ perspectives on the diagnostic classification of mental disorders: Results from the WHO-IUPsyS Global Survey.

Evans SC, Reed GM, Roberts MC, Esparza P, Watts AD, Correia JM, Ritchie P, Maj M, Saxena S.
Source
a Clinical Child Psychology Program, University of Kansas, Lawrence , KS, USA.

Abstract

This study examined psychologists’ views and practices regarding diagnostic classification systems for mental and behavioral disorders so as to inform the development of the ICD-11 by the World Health Organization (WHO). WHO and the International Union of Psychological Science (IUPsyS) conducted a multilingual survey of 2155 psychologists from 23 countries, recruited through their national psychological associations. Sixty percent of global psychologists routinely used a formal classification system, with ICD-10 used most frequently by 51% and DSM-IV by 44%. Psychologists viewed informing treatment decisions and facilitating communication as the most important purposes of classification, and preferred flexible diagnostic guidelines to strict criteria. Clinicians favorably evaluated most diagnostic categories, but identified a number of problematic diagnoses. Substantial percentages reported problems with crosscultural applicability and cultural bias, especially among psychologists outside the USA and Europe. Findings underscore the priority of clinical utility and professional and cultural differences in international psychology. Implications for ICD-11 development and dissemination are discussed.

PMID: 23750927

[PubMed - as supplied by publisher]

+++

Slide Presentation: Aug 3, 2012

The WHO-IUPsyS Global Survey of Psychologists’ Attitudes Toward Mental Disorders Classification.

Download PDF WHO-IUPsyS Global Survey slides

+++
More information on this WHO study can be found on Page 7 (3.) of this report:


http://www.apa.org/international/outreach/icd-report-2012.pdf

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

Click link for PDF document    WHO-IUPsyS ICD Survey Report Report 2012

This report also sets out the responsibilities of ICD Revision working groups, on Page 3 (1.1), and gives some information on the field studies for ICD-11 and ICD11-PHC, on Page 8 (4.)

+++

The earlier study: WPA-WHO Global Survey of Psychiatrists’ Attitudes Towards Mental Disorders Classification can be downloaded here: 

The WPA-WHO Global Survey of Psychiatrists’ Attitudes Towards Mental Disorders Classification

World Psychiatry 2011;10:118-131

Research report

Geoffrey M Reed,  João Mendonça Correia, Patricia Esparza, Shekhar Saxena, Mario Maj

+++

Karina Hansen initiatives: A clarification

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Karina Hansen initiatives: Clarification notice

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

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 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.
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.

+++
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

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

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

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.

+++
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

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

+++
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.”

BDD 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 BDD 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 distinct 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

+++

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

Posted on by
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.
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.

+++

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?

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.

+++
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.

+++

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

Posted on by
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.
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.

+++

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?

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

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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