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

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

Update: Mental Health Act and related documents added at end of report.

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She tells the nurses, “You are killing me.” 

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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 [1] [2] [3].

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 [4] [5]. The Belgian Minister of Health officially declared that GET should not be regarded as a curative therapy for ME [6].

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 [7]. 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.

1 http://www.me-foreningen.dk/filer/Forskning_viser_CBT_og_GET_ikke_helbreder_ME.pdf
2 http://www.iacfsme.org/LinkClick.aspx?fileticket=Rd2tIJ0oHqk%3D&tabid=501
3 http://www.pugilator.com/awareness/is-this-the-end-for-the-belgian-cfs-reference-centers/
4 http://www.me-foreningen.dk/images/stories/me-cfs/pdf/cbt-%20get%20reivew%20twisk-maes.pdf
5 http://me-foreningen.com/meforeningen/innhold/div/2012/09/CFS-la-b%C3%AAte-noire-of-the-Belgian-Health-Care-System-Maes-Twisk.pdf
6 http://www.biomedcentral.com/1741-7015/8/35
7 http://www.me-foreningen.dk/images/stories/me-cfs/pdf/ic%20primer%20-denne%20anbef.%20kopi%203.pdf

Rebecca Hansen, chairman, ME Association, Denmark

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