Showing posts with label karina hansen. Show all posts
Showing posts with label karina hansen. Show all posts

Thursday, April 3, 2014

Karina Hansen Still in Limbo

From: Justice for Karina Hansen http://on.fb.me/1gF6Ynv

We want to share this letter written by Per and Ketty Hansen to members of Parliament that was presented in conjunction with the hearing held on March 19th.

On that day no mention of Karina was allowed but this letter is shared on the public site listed here. http://bit.ly/1jnRF30

Stig Gerdes (a doctor who spoke at the hearing) wanted to read this letter but no mention of individual cases was allowed.
________________________________



Dear Parliament Members

Attached is Per & Ketty's description of their meeting with Hammel Neurocenter in connection with their daughter Karina's hospitalization.

As can be seen, Karina's condition is not good. I'm under the impression that some of you have seen her and are under the impression that she was doing okay. That is highly dependent upon what eyes have seen her and how she was doing before.

The print-out from the recording can be sent to you if you are interested. We'll meet at the hearing about functional disorders on March 19. Regards

Dr Stig Gerdes

----------------------------------

February 12th, 2013, was the day our daughter, Karina, who suffers from severe M.E. (G 93.3), was forcibly committed, stripped of her human rights to decide what treatment she wants for her disease (ME G 93.3), her right to decide what doctor she wants to treat her, her choice of who should look after her personal and financial interests and who should speak for her to the outside world. She has since been under the treatment of a psychiatrist from FFL (Research Clinic for Functional Disorders ) against her and our will.

Karina's diagnosis (ME G93.3) was originally given by King Christians Arthritis Hospital in 2008, where she was a patient for 3 weeks. Later it was confirmed by 3 doctors who all have special knowledge of or expertise in the somatic (physical) disorder ME (G 93.3). Karina have been through years of physical examinations, including psychiatric, and has at no point in time been declared mentally ill in any way. (Documented in her medical records)

Despite this, she was incarcerated as a disqualified person, noted by two doctors with no special knowledge of the disease ME (G 93.3). A psychiatrist from the Liaison Clinic in Copenhagen that has never been in contact with Karina or us (her parents), has from information about her condition given by the established authorities declared that her ME symptoms can be aligned with insanity. It was the Board Of Health that decided Karina should have a surprise visit by a doctor that should decide if she could be incarcerated for psychiatric treatment (Documented in print).

Karina has now been incarcerated for over a year at Hammel Neurocenter, under the treatment of a psychiatrist from FFL. These psychiatrists have, without special knowledge of Karina's disease ME (G 93.3), converted her physical disease into a mental illness that still does not have a diagnostic code (PAWS). (Documented via microphone).

The leading physicians at Hammel Neurocenter and the psychiatrists from FFL, who are responsible for Karina's treatment have been given ample information about symptoms in severe ME. They have noticed these symptoms in Karina, but describes it as psychiatric symptoms (documented via microphone). They are informed that abnormal organic differences can be found via proper testing and analyzed by recognized laboratories abroad. Some of the worlds most recognized ME specialists have been in touch with the doctors in charge to give advice on how to care for someone as sick as Karina to make sure she is not wrongly treated. A wrong treatment will have fatal consequences for Karina's chance of recovery from her condition, and in several cases wrong treatment of ME patients have resulted in death. (Partly in writing, partly on microphone).

Countless times have we sincerely requested that Karina gets a second opinion, by doctors with special knowledge about ME, so they can confirm or not if there is anything organic that creates Karina's condition. The foreign experts are offering to come to Hammel Neurocenter to check on Karina and make sure the appropriate tests are taken and analyzed, and thereby give a second opinion (documented in print). This is consequently denied by the physicians and psychiatrist in charge (documented via microphone).

Their reasoning for denying a second opinion from specialists in ME is deeply worrying. Their arguments are contradictory and boil down to the fact that they want to be solely in charge of treating her, and don't wish anyone outside the building (Hammel Neurocenter) to interfere with the treatment, and no blood tests should therefore be sent outside the building. At the same time, we are told they are cooperating with English psychiatrists that will see Karina at Hammel Neurocenter (documented via microphone).

The updates we have been giving during the incarceration from the people in charge of Karina's treatment is deeply worrying. The people in charge keep falling into contradictions. They contradict each other time and time again. One leading physician accuses the other of telling us lies (documented via writing, telephone notes, and microphone).

The whole time Karina has been incarcerated we, the parents, have been refused to be allowed to see her with varying and contradictory explanations as to why. (documented via microphone and in print). However, her big sister has been given permission to see her twice. The last time was in April 2013 but with conditions for the visit. She was told what she was allowed to say and what she could not say. She was told she should show Karina that she supported the treatment forced upon her, and she was not allowed to go into her room alone. It was a condition that the staff was present (conversation at a meeting and recorded on microphone). However, for Karina's sister it was humanely impossible to act positive. She could clearly see there was a deterioration in Karina's condition, and was so shocked that she started crying. Karina was deathly pale and looked very sick and didn't even recognize her own sister, who routinely had contact with Karina before the incarceration, as she is a registered nurse and helped in caring for Karina at home.

Karina has not been given the opportunity to contact the outside world since the day after her incarceration when her cellphone's battery went dead. The physicians in charge does not want to help in making sure she has access to a working cellphone (recorded on microphone). The last time we heard from Karina was when she called home on February 13th 2013 and said "How can I get out of here - I can't take this". That same day she made her last call to the police (printed from Karina's phone records).

It is unbearable to think about the fear and pain Karina has to suffer through every day. She has become an unwilling guinea pig for psychiatry. She has become so because the doctors and psychiatrists in charge have no experience in treating patients with severe ME (documented via phone notes, and a meeting with witnesses).

The psychiatrist in charge has notified us that it does not matter what diagnosis Karina has (in print). She is daily exposed to physical retraining and sense-therapy. She is not asked if she can manage this or that, but is ordered to do it. No matter how she tries to protect herself against these abusive actions and mistreatment - like crying, turning around, or scratching the ergotherapist . She is up against a bigger force that has control over her and has deemed her to be a psychiatric case (recorded on microphone).

The psychiatrist in charge has consequently refused that Karina is given a second opinion where she can be seen by a foreign professional with special knowledge about the disease ME (G 93.3), and where they will take special tests recommended for ME patients. (recorded on microphone).

It is deeply disturbing that something like this can happen in a country like Denmark, and in such an enlightened world as we live in. There are numerous scientifically proven and well-documented biomedical research results from abroad that proves ME is a physical disease. It is not a disease that can be trained away, on the contrary it can produce fatal chronic damage. The psychiatrists have not succeeded in making Karina able to walk after a year of rehabilitation. On the contrary, they have succeeded in taking away her ability to speak, recognize her own family (sister), and cause her horrific symptoms that were not present before the incarceration. The psychiatrist tries to blow this off by telling that Karina just needs to show that she can walk and speak and that all her symptoms are psychiatric (recorded on microphone and print).

A whole world is in shock over Karina's fate and how ME patients are met with mistrust and faulty treatment in the Danish healthcare system. In these years, science abroad moves forward with evidence of extreme physical abnormalities in ME (G 93.3), but in Denmark no one wants to hear or see this.

We are a family, parents and siblings, that are filled with grief, helplessness and wrath over that something so horrible can happen at all, and are deeply worried over Karina's ongoing fate.

Regards

Per & Ketty Hansen

Monday, March 17, 2014

Fight over Diagnosis Leads to Hearing


Press Release: ME Association of Denmark

Who decides if the cause of an illness is physical or psychological? Should psychiatrists have the right to incarcerate patients and force psychological treatment if they disagree with a physical diagnosis?

A dispute over the cause and treatment of a young woman’s illness led to her being forcibly removed from her parents' care on February 12, 2013.

The psychiatrists responsible for this claim she has a mental illness (somatoform illness), while her doctors and parents insist she has a physical neurological illness called ME. The Danish woman, Karina Hansen, is still hospitalized against her will and forced to receive treatments that have been proven to hurt ME patients.1 Karina’s sister reports that Karina is much worse than before she was hospitalized. You can read Karina’s story here:

http://www.prohealth.com/library/showArticle.cfm?libid=18739&site=articles

This heated conflict will now be discussed at an official hearing at the Danish parliament on March 19th in Copenhagen.2

The psychiatrists in charge of Karina work at The Research Clinic for Functional Disorders and Psychosomatics in Aarhus, Denmark.3 This clinic has created so much patient dissatisfaction that 16 patient associations requested that the clinic be investigated. A hearing has now been called and Karina’s lawyer is scheduled to make a presentation about her case. Other speakers include doctors who are specialists in conditions this clinic treats with purely psychological methods. These conditions include whiplash, fibromyalgia, IBS, PMS, Chronic Pelvic Pain, etc.

A Danish Justina Pelletier?

Karina Hansen’s story has many parallels to the story of American teenager Justina Pelletier. Both girls were forcibly hospitalized in February last year and both sets of parents were accused of mistreating their daughter by following medical advice from experts in the girls’ respective diseases. Justina has mitochondrial disease. In both cases, the psychiatrists in charge refused to allow a second opinion. And in both cases, the human rights of the patient and the parents have been completely ignored.

Justina’s story will be told on the Dr. Phil show on March 17th.4 Karina’s case will be discussed at the open hearing in the Danish parliament on March 19th. The hearing will be streamed live and later posted on Youtube. The hearing will be in Danish, but an English language statement about the hearing will be released within a week from this source.

Rebecca Hansen - ME Association, Denmark - reh@me-foreningen.dk

1 Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

2 http://www.ft.dk/Folketinget/udvalg_delegationer_kommissioner/Udvalg/Sundhedsudvalget/Nyheder/2014/02/funktionelle%20lidelser.aspx

3 http://funktionellelidelser.dk/en/about-the-clinic/

4 http://www.examiner.com/article/dr-phil-talks-with-parents-of-hospital-kidnapped-justina-pelletier

Thursday, February 6, 2014

A Year Later - Karina Hansen Still Confined in Mental Ward

A year has gone by and Karina Hansen, a young Danish woman with severe ME, is still confined in a mental ward, where her condition is deteriorating. Her treatments, supervised by psychiatrist Nils Balle Christensen, consist of GET and CBT. A group of concerned patients and advocates, Justice for Karina Hansen (J4KH), has sent a letter to Karina Hansen's guardian asking for a second opinion from Dr. Nigel Speight, a British pediatrician who has been involved in similar cases. (Watch an interview with Dr. Speight HERE.) 

Please scroll down to see what you can do to help.

By J4KH

No one should be stripped of their human rights because they are ill. We have a right to be treated with dignity and respect. We are all vulnerable when we become ill and enter the healthcare system. We must make sure that laws are enforced and human rights are respected for all people.

Karina Hansen is a 25-year-old Danish woman with severe ME (Myalgic Encephalomyelitis). ME is a neuroimmune illness with the defining characteristic of post-exertional malaise or post-exertional neuroimmune exhaustion. It has been coded as a neurological illness (G 93.3) by the World Health Organization since 1969. Cases that are severe can cause a patient to be bedridden and in need of a carefully controlled environment in order to prevent exacerbation of symptoms. Light, noise, and touch can all be physically painful to an ME patient.

Karina has been battling this illness since the age of sixteen with the help of her loving parents. It took seeing different doctors at different institutions to receive the correct diagnosis. After receiving treatment that made her worse, Karina and her parents took steps to prevent this from happening in the future. They hired their own physician and dietician to treat Karina. Her mother, Ketty, was her full-time caregiver. Because of Karina's extreme sensitivity to stimuli such as sound and light, her parents moved into a trailer in their backyard during the day to allow Karina the quiet she needed. Karina hired a lawyer and gave her parents power of attorney to act on her behalf.

Unfortunately, in Denmark ME patients are often labelled as having a functional disorder. The treatment for a functional disorder includes graded exercise therapy (GET), cognitive behavioral therapy (CBT), and possibly anti-depressants. Testing has shown that the bodies of ME patients respond to exercise differently than healthy people. Forcing exercise upon people with this illness can cause a significant worsening of symptoms. Cognitive behavioral therapy can be helpful to some people but only as an adjunct therapy. Treating conditions such as cancer or MS with CBT and GET alone would be considered outrageous, not because they are bad in and of themselves, but because they in no way treat the underlying illness. Treating ME with these therapies is even worse because exercise can actually be detrimental to the patient.

Summary of Karina's experiences prior to her forcible removal

In 2008 Karina was admitted to an arthritis hospital for a two-week treatment that involved GET. At the end of this stay she could only be active an hour a day. She was given the observational diagnosis of ME at this clinic.

At this time Karina and her family did not understand the concept of post-exertional neuroimmune exhaustion and the danger that forced exercise (GET) can have for ME patients. The doctors encouraged it as a way to get better and Karina and her family understandably followed this advice. In 2010, Karina was again pressured into hospitalization and once again her sensitivities to sound and light were not taken into account. During this time a doctor wrote in her journal that Karina had no depressive or psychotic tendencies. Karina and her parents knew that this hospital treatment would be detrimental to her and fought to take her home. The doctors admitted there was absolutely no cause to keep her for psychiatric reasons and she was able to go home. Eleven days later a well-known ME expert examined her and confirmed the diagnosis of ME.

Because of their past experiences, Karina's parents also had another ME expert come in 2011 to confirm the diagnosis and to offer suggestions for testing or treatments that could improve Karina's quality of life. They wanted to ensure that they were doing all they could to properly care for their daughter at home. The ME diagnosis was once again confirmed and further supplements and suggestions were made. At this time in March 2011, a local doctor and medical officer interviewed Karina and found her to be competent to decide her own treatment. Karina explained to them that she did not want CBT or GET and instead chose treatment advice from ME experts. The medical officer wrote an official document in which he accepts Karina's decision to choose her own treatment. With ME being diagnosed multiple times and Karina once again declared mentally competent the family felt secure that all the steps to keep Karina safe had been taken.

In May 2012 Karina had a surprise visit from her GP and another local doctor. The GP had been pressured by the Board of Health to make this visit to evaluate her mental state. Once again Karina was declared mentally competent and could therefore not be forced into unwanted treatment. However, they said they she would have to have a new psychiatric evaluation in a few days. At this time Karina and her parents chose to get her story out to the public in hopes it might protect her. Karina chose pictures that could be used and said she hoped it would help others in her situation.

In May 2012 Karina hired a lawyer and gave her parents power of attorney to make legal and medical decisions for her when she could not. During this time, the Board of Health assigned a psychiatrist to her case and he began contacting Karina's parents asking to visit Karina. Karina is under group 2 in the healthcare system which means she can chose any doctor she wishes and that the government cannot assign her one. She had chosen her own doctors and her family made it clear they did not want this psychiatrist involved in her case. They did not understand why he had any right to be involved in Karina's care.

This psychiatrist continued to insist that he see Karina and pressured them to admit Karina to a hospital, but he would not provide a treatment plan despite written requests by Karina's parents that he do so. The ME Association, Denmark offered to put him in touch with ME experts and have one visit Karina. This psychiatrist refused. In the fall of 2012, Karina's parents stopped all contact with this psychiatrist, but unbeknownst to Karina and her parents, this doctor did not stop his involvement in Karina's case. This doctor wrote to the Ministry for Health and Prevention asking about the right to keep relatives from visiting members in the hospital. He received the reply in a five-page answer that explains that human rights have priority.

Forcible removal and systemic stripping of Karina's patient rights

On February 12, 2013 Karina Hansen was forcibly removed from her bed and relocated to Hammel Neurocenter. A total of five policeman, two doctors, two caseworkers, and a locksmith arrived unannounced to remove one bedridden young woman from her mother's loving care. Ketty Hansen (Karina's mother) was physically held back while her daughter called for her to come help and repeatedly rang her bell (her way of calling for her mother).

The anguish in that moment would be indescribable. What an overwhelming display of force against a bedridden daughter and her mother! Karina used her cell phone to call and text for help. She tried to call her mother who wasn't allowed to answear. She called her sister and father and asked for help. This was an enormous expenditure of energy for someone as sick as Karina. Her adrenaline must have been pumping as she sensed danger.

Later reports showed that during this time the house and its contents, such a supplements, medications, and the food in the refrigerator were photographed. Presumably they were looking for evidence of neglect and, of course, did not find it as Ketty had always received praise for her care of her daughter by doctors who visited her home. Per and Ketty (Karina's parents) took excellent care of Karina. In the aftermath of this visit Per and Ketty found a note on the floor by the door. It said "to Karina's parents. You will be contacted by a head doctor every day at about 10:00 with information about your daughter. You may also contact the place of treatment at this phone number xxx-xxx between 13:30 and 14:30 every day." There was no name or address on the paper. This was the only piece of paper they received that day!

On February 13th Karina called her mother and said "How can I get out of here? I can't take it" and the connection was cut. That was their last contact. They later discovered that Karina made a total of 43 phone calls and sent 7 texts in an attempt to get help before her phone died. Her last call was a call to the police that lasted about 40 seconds. Transcripts have been requested but not provided.

Her family has requested multiple time that her phone be charged for her. The response they received is that Karina must do it herself but she cannot walk to charge it. This shows an extreme callousness to her condition and the extra help Karina needs because of it.

A brief review of the past year

Karina's parents were finally informed that Karina had been taken to a neurocenter for treatment of her "severe condition." They were told that Karina could not have visitors for 14 days and then it would be reevaluated to see if she could have visitors. Although this contradicts what we now know was communicated to this doctor prior to Karina's removal.

This original time period was then extended to 3 weeks because the psychiatrist was on vacation. Then the terms of visitation were that only visitors who supported the treatment given were to be allowed.

During this past year Karina's decision to give her parents power of attorney has been disregarded. She has been appointed a guardian by the state. The guardian did not know Karina or her wishes prior to this. He believes in the treatment Karina is receiving. Conversations in meetings with the caregivers at Hammel Neurocenter have revealed a deep prejudice against ME. One doctor went so far as to call those who believe in ME "imbeciles."

Karina's parents and attorney are fighting this battle in the court system. It is a long, slow, uphill battle. Meanwhile Karina should be afforded the right to the support of her family, the right to change healthcare providers, and the right to have complaints treated in a swift and just manner. She has told them "you are killing me" and she has begged to be allowed to go home, and yet they disregard her.

They have stripped her diagnosis of ME and replaced it with a controversial diagnosis of PAWS (pervasive arousal withdrawal syndrome). Considering Karina has had multiple doctors diagnose her with ME, a second opinion by an ME expert seems to be the correct choice. Karina's parents are asking that Karina's right to a second opinion be enforced. According to the Danish Health Care Act, 2010, a second opinion is allowed if the condition is severe or life-threatening. The Declaration on the Promotion of Patients' Rights in Europe states that all patients should have the possibility of obtaining a second opinion. (2.7)

A well-known ME expert has volunteered his time to see Karina. His travel expenses will be paid by a patient association. This seems a small and easily grantable request in light of this situation. Karina's parents wrote to the guardian asking to allow Karina to take advantage of this opportunity to see an ME expert. The guardian responded saying that he trusts the team at Hammel Neurocenter and that he believes Karina is currently receiving the correct treatment but he said he would bring up their request at the next meeting with the team at Hammel.

What you can do

Please join J4KH in asking that the guardian and the team at Hammel grant Karina this right to a second opinion! We have ways for you to join in listed below.

  • Please like Justice for Karina Hansen on Facebook and follow us on twitter at Justice for Karina H @Justice4KarinaH to stay updated.
  • Sign the petition to allow Karina to have a second opinion HERE
  • Lend us the power of your social outreach and join us in a thunderclap for Karina! More information HERE
  • You can see the open letter written to Karina's guardian by the managers of J4KH HERE
Sources:

1. Rynning, E. (2011), Nordic Health Law in a European Context: Welfare State Perspectives on Patient Rights and Biomedicine. Retrieved HERE.
2. Declaration on the Promotion of Patients' Rights in Europe,
3. Crowhurst, G. (2013) Severe ME, UK: Stonebird

Tuesday, July 30, 2013

ME/CFS, Fibromyalgia, IBS, MCS, and Chronic Pain Redefined as Mental Disorders

In 2010, Drs. Fink and Schröder, two Danish psychiatrists, redefined several physiological illnesses as a single mental disorder: "bodily distress syndrome." Among the illnesses which Drs. Fink and Schröder reclassified are: Neurasthenia, chronic pain, Chronic Fatigue Syndrome, Myalgic Encephalomyelitis, IBS, Syndrome X, “heart-ache," Fibromyalgia, Whiplash Associated Disorder, pain in the pelvis when pregnant, electricity-hypersensitivity, infrasound-hypersensitivity and Multiple Chemical Sensitivity (MCS). 

The unstated rationale for the reclassification is that because these conditions don't fit into a medical "cookbook," a single psychiatric diagnosis would relieve physicians of the onerous task of spending the time required (i.e. more than 10 minutes) to diagnose and treat these patients. In short, patients with "unexplained" illnesses could now be shunted off to a therapist -  therapy being less costly than extended visits, extensive testing, and expensive treatment.

The diagnosis of "bodily distress syndrome" has as much scientific validity as "possession by evil spirits." But that has not prevented Danish agencies from adopting "bodily distress syndrome" as a legitimate diagnosis. This "diagnosis" provided the grounds for removing Karina Hansen from her home in February 2013 to a psychiatric hospital, for revoking her right to legal representation, for enforcing "evidence-based care" (exercise and cognitive behavioral therapy), and for prohibiting visits from her parents. 

(Below is the abstract of the Fink and Schröder study.)

One single diagnosis, bodily distress syndrome, succeeded to capture 10 diagnostic categories of functional somatic syndromes and somatoform disorders

By P. Fink and A. Schröder

ABSTRACT

BACKGROUND: In order to clarify the classification of physical complaints not attributable to verifiable, conventionally defined diseases, a new diagnosis of bodily distress syndrome was introduced. The aim of this study was to test if patients diagnosed with one of six different functional somatic syndromes or a DSM-IV somatoform disorder characterized by physical symptoms were captured by the new diagnosis.

METHOD: A stratified sample of 978 consecutive patients from neurological (n=120) and medical (n=157) departments and from primary care (n=701) was examined applying post-hoc diagnoses based on the Schedules for Clinical Assessment in Neuropsychiatry diagnostic instrument. Diagnoses were assigned only to clinically relevant cases, i.e., patients with impairing illness.

RESULTS: Bodily distress syndrome included all patients with fibromyalgia (n=58); chronic fatigue syndrome (n=54) and hyperventilation syndrome (n=49); 98% of those with irritable bowel syndrome (n=43); and at least 90% of patients with noncardiac chest pain (n=129), pain syndrome (n=130), or any somatoform disorder (n=178). The overall agreement of bodily distress syndrome with any of these diagnostic categories was 95% (95% CI 93.1-96.0; kappa 0.86, P<.0001). Symptom profiles of bodily distress syndrome organ subtypes were similar to those of the corresponding functional somatic syndromes with diagnostic agreement ranging from 90% to 95%.

CONCLUSION: Bodily distress syndrome seem to cover most of the relevant "somatoform" or "functional" syndromes presenting with physical symptoms, not explained by well-recognized medical illness, thereby offering a common ground for the understanding of functional somatic symptoms. This may help unifying research efforts across medical disciplines and facilitate delivery of evidence-based care.

Source: J Psychosom Res. 2010 May;68(5):415-26. doi: 10.1016/j.jpsychores.2010.02.004. P. Fink and A. Schröder. The Research Clinic for Functional Disorders and Psychosomatics, Aarhus University Hospital, 8000 Aarhus, Denmark. per.fink@aarhus.rm.dk

Sunday, July 14, 2013

Karina Hansen - "You are killing me."

This is the first in a series of videos documenting the plight of Karina Hansen, a young woman with severe ME/CFS who was forcibly removed from her home on February 12, 2013 and placed under the care of psychiatrists. She is currently being treated with GET (graded exercise therapy) and CBT (cognitive behavioral therapy). Karina has told the staff at the Hammel Neurocenter, "You are killing me."





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