A mother’s fruitless struggle – and a child’s pathway to suicide

I am so honored that Mia Berg, patient safety and patient rights advocate and founder of PatientPerspektiv in Sweden, has agreed to once again contribute a post to the Dahlborg Healthcare Leadership Group (DHLG).
180218 What-Sweden-Can-Tell-Us-About-Obamacare
Especially with such an important story.

And as you read, notice the connectivity to the recent post: From Sound of Silence to Sound of Caring.

In many ways Swedish Healthcare and US Healthcare are on similar trajectories and we have much to do … together.
English version:

Marie* calls me very often. She says she can´t take it anymore and cries. Her fruitless struggle for her grown daughter within the psychiatric care is reaching an end. Marie has fought to the very limit, making herself physically worn down if not ill; she was recently diagnosed with a possible throat tumor. She says it came because her voice has been silenced.

I don’t doubt her. I know from experience how cancer strikes when we are already in a vulnerable state. Marie´s dejection is apparent. She really can´t take that much more. Her dejection derives from a fruitless struggle she’s been in for years now. She struggles to support her daughter, Melanie*, who has been forced into psychiatric care for periods of her life after being diagnosed with Aspergers after a neuro-psychiatric evaluation as an adult. Over time, she has been diagnosed three different times by three different doctors — all with the same diagnosis. Yet, the psychiatric care unit hasn’t listened to the evaluations. Melanie is also bipolar and has had no less than twenty-two electric shock treatments (ECT). Marie says that nothing remains of her daughter´s personality.

Through the years, Melanie has had multiple psychoses, panic attacks, suicide attempts and self injury behavioral problems, often caused by faulty medications being prescribed or too heavy dosages. When Marie sought care for her daughter in other districts, she was refused because Melanie was so heavily medicated, that no other care unit dared take her on in fear of tipping her over the edge. Even when Melanie seeks regular care outside psychiatry she does not receive it. Instead, she gets sent back to the psychiatric ward immediately.

Marie once tried to file a police report for unlawful restraint when an open care facility kept Melanie against her will, but the police gave her the cold shoulder. They referred her to IVO, the Swedish authority for inspecting the health care providers.

Let me now describe a very common systemic fault which a lot of patients who are injured in the health care system encounter: the unwillingness by the police to file patient reports. Instead, the police refer to IVO. I don´t know if this happens because there is confusion about who should be doing what, or whether it is a conscious strategy to keep patients from reporting errors or because the police lack both resources and knowledge within health care processes. But the fact is that IVO only inspect the medical grounds for error, not the legal. So the police are wrong in refusing to file. It is their duty. Plain and simple. Which they finally did when Marie insisted on my command.

But let´s go back and start at the beginning: Melanie was born in 1978 and has had problems with being bullied and not included since she was just a little girl. She never quite got the social codes. During her early teens, she began having serious panic attacks and was placed under heavy medication of various drugs: Anafranil, Stesolid, Seroxat, Citalopram and Zoloft.

Nothing worked and Melanie was admitted to hospital care. Later in life she had a boyfriend, moved away from her home town and got a Masters in Behavioural Science. It was around this time that one doctor and a nurse began suspecting Melanie might have Aspergers. Melanie spiraled into a psychotic state while her mother-in-law got severe cancer and died. A new drug was prescribed and the dosage of Stesolid was increased. Melanie responded very badly with painful cramps and screaming uncontrollably.

She calls her mother, not wanting to live anymore.

Yet another medication is prescribed: Fluanxol. It does not help.

The neuro-psychiatric evaluation is completed and Melanie gets her second Aspergers diagnosis. Her doctor in the open care facility prescribes Lamictal for her and makes Melanie sign a contract of secrecy and can not tell her own mother anything about what is going on.

During this time, Melanie is very often placed in restraint at the psychiatric ward. Or in isolation. Or gets shut out of her own room. Then they take away her phone. She is not allowed any contact with her mother. Thirty minutes every morning and evening she is allowed to call her husband. Sanctions. Nothing more.

It´s decided that Melanie will receive ECT-treatment and since her mother is under secrecy, she is not told anything.

After only a few ECT-treatments, Melanie gets suicidal and is admitted to a psychosis ward. The nurse who contributed to Melanie’s Aspergers diagnose is now Head of the Psychiatric department and makes several attempts to stop the ECT. The doctor in the psychosis ward keeps placing Melanie in restraints. Once, she gets so heavily medicated that the emergency team must be called in.

Melanie is not allowed to communicate with her mother throughout all of this. All of the staff refuse to speak to Marie too. In the end, one of the nurses tells her everything anyway.

The ECT-treatments continue and Melanie receives a whopping twenty two all in all. Parallel to being medicated with Fluanxol, Stesolid, Anafranil, Zolpidem, Lamictal, Klonazepam, Promethazine and Lithium on top of all the rest! Especially combining Lithium with Anafranil, could be a dangerous mix, which Marie knew but was prevented to communicate her fears to the care facility staff.

Melanie again feels a deep hopelessness and is found on the railway tracks.

When Melanie is released she is in very poor condition. Shortly thereafter she again gets suicidal and no health care providers will answer neither her nor her mother’s calls.

Melanie overdoses.

Marie tries calling the E.R. who does not respond. She tries to call SOS Alarm who does not respond either. And the health advisory phone line can do nothing. The psych ward refuses to make the in-house call to the E.R. Finally after several hours of struggle, afraid her daughter would die, Marie reaches the SOS Alarm who immediately send an ambulance.

The irony of it all is that only the day before, Marie was told by the Chief of staff to “trust the care facility” …

Melanie again gets admitted to the psychiatric ward. She is not allowed to go outside for five weeks. Afterwards, there is a counsel on the subject of forced care and it is decided to give her four months. She´s moved and windows and doors are opened to her. Eventually, she is released and prescribed one more drug, Cisordinol.

Did not go so well. After a short while at home, Melanie is suicidal again. A new doctor in her open care facility prescribes Seroxat again.

“When Melanie and her husband come to the open ward meeting, she believes the dust in the air to be plutonium and she herself to be a caramel in a chocolate box.”

After a couple of days, Melanie overdoses again. The police come to get her. More Anafranil and a new neuro-psychiatric evaluation. A couple of weeks later, she is sent back home again — in spite of suffering from psychosis. This is the time when Melanie and her husband come to the open ward meeting and she believes the dust in the air to be plutonium and she herself to be a caramel in a chocolate box.

She gets a shot of Cisordinol.

Melanie now has blood in her stool, she vomits when eating and her blood count is very poor. Again admitted with another suicide attempt on the railway tracks with the police coming to get her as a result.

The neuro-psychiatric evaluation is finished and it is now clear beyond a doubt that she has Aspergers. The evaluation team can not even comprehend how this could have been overseen for so many years! They tell Marie they would have never believed Melanie to have a Master’s degree unless they hadn’t seen it themselves.

Melanie now gets worse and worse and the doctors want to try to discontinue all medication and release her. She again says she wants to end her life. She suffers severe insomnia and gets to see a neuro-psychologist once a week. Trouble starts and Melanie is admitted once more, this time with a suicide attempt using a sheet as a noose. She immediately gets punished by being locked out of her room, only allowed to roam the corridor and the day room. She also gets isolated and restrained.

Another hanging attempt. More restraints.

Marie is called to a meeting with the superintendent who tells her Melanie is chronically suicidal. Marie falls apart.

Forced care for Melanie again. And again another hanging attempt.

Melatonin is prescribed which Melanie´s body does not tolerate. She is now moved to a group home where she is immediately bullied by a co-patient. She does not sleep, ends up in a psychosis and restarts a self-injuring pattern after a ten year intermission. She comes back home on Propavan, a little later also Seroqvel, none work. And finally Heminevrin.

So now, maybe you understand why Marie is at her limit. Even though she has no choice but to keep fighting for her daughter’s right to receive care instead of neglect. Even Marie´s own mother years ago told Marie that “some day Melanie will appreciate everything you do and have done for her”. (Marie´s mom died 17 years ago)

But Melanie still has her Aspergers and can not see things in a longer perspective, which often affects Marie — who has to keep on fighting. Even though she has reached her limit.

And everything just continues …

PS: I understand how a lot of you read this in disbelief. I would too, ten years ago. Sweden has a world wide reputation of having a top notch health care. We did. Past tense …

180218 Study-in-Sweden

NOTE: “Marie” and “Melanie” are not their real names.

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