Sunday, November 28

Getting life-saving help for my sister has been a struggle

  • Jørn Ljunggren

    Relatives and inequality researcher at NOVA, Oslo Met

One of her last wishes was that we should talk about this, so maybe someone else would avoid the same journey, writes Jørn Ljunggren about his sister (pictured).

Two perspectives must be taken into account when we discuss what society should do with the seriously mentally ill.

This is a chronicle. Opinions in the text are at the writer’s expense.

After two brutal and tragic events, it is discussed once again what society should do with seriously mentally ill people. The discussion is about people who may be a danger to others, but should not stop there.

Beneath the surface of “forced treatment” there is an enormous amount of suffering, frustration and inadequate communication about those who do not harm anyone but themselves. The reduction in beds in mental health care affects not only patients but also their relatives.

As a relative of a seriously mentally ill sister for many years and as an inequality researcher, there has been no shortage of experiences of lack of treatment, of the frustration of being powerless in the face of her ailments, or of seeing how important it is to have a network that can fight for the patient should receive help.

Her illness, and the struggle to get adequate treatment, has been so exhausting for my family that I could not bear to relate to the debate about coercion that has now flared up.

When the discussion is so narrow and dominated by health professionals, I still think it is important to include two perspectives:

The one is about the assessments and dissemination of these by health professionals.

The other is about the importance of who you and your family are – and what resources you can mobilize – for what kind of treatment you get.

Patients’ voluntariness

The emphasis in recent years on patients’ voluntariness is a welcome development compared with previous coercive use.

In 2017, the legislation was also changed. Patients’ legal security and ability to decide for themselves should be ensured by introducing what in a legalized health professional language is called a «competence-based model», where coercion can only be used if the patient lacks «consent competence». In practice, this means that patients can refuse treatment if the health service does not believe they pose a danger to their own or others’ lives.

Few want to be locked up or to forcibly treat others more than necessary. I have nevertheless found myself in what at first appeared to be completely absurd situations, but which eventually, and just as absurdly, became quite common.

My sister was many times so ill and, in the opinion of normal people, so unable to take care of herself that there was obvious danger to her life. However, decision-makers in the health care system were often of a different opinion: She was competent to give consent, and there was no need for measures.

Health professional assessments

I write “normal people’s assessments”, because in conversations with other relatives and other bodies, it has become very clear that it is not just us, as desperate next of kin, who do not understand health professional assessments about the absence of assistance.

On one occasion, when I came to my sister who had injured herself, with blood everywhere, I called 113. Both the police and the ambulance came. But the ambulance staff had been informed in advance that this was a “recurrence”, and that it was not necessary to take her to the hospital.

Fortunately, the police officers responded and insisted that she go to the hospital. She, of course, posed an immediate “danger to herself.” Four hours later, she was still home. With consent competence and bandage.

Changes position if you are steadfast enough

It is a tremendous strain to argue that the authorities should lock up family members. In addition to having to fight for it, is surreal. It gives no pleasure to visit family in a closed ward when you have been a strong contributor to placing them there. Only bright spot is that someone else is watching. A little while.

Something immediately satisfying, but in the long run extremely frustrating, is that the health service can change its position if you are steadfast enough. If you know where to turn and can articulate yourself in a way that is recognized by decision makers.

The system has many appeal options. In my family, we had the telephone number of the district superintendent, the patient ombudsman and the Norwegian Board of Health on our mobile phones. Not infrequently, the institutions changed their minds after we had involved new actors.

One such experience was from when she was so emaciated that she could not get up, and I could not get in touch with her. After calling all instances and getting no, I called the district superintendent and notified of legal action. Then came the ambulance.

After two days she was home again. With consent competence.

A struggle to get vital help

My family has taken the time to protest, hustle and quarrel. And I have never had more benefit from mastering academic lingo, studying science theory or having a network of doctors, psychologists and lawyers.

Still, getting my sister’s vital help has been a struggle. I hardly dare think about what it is like for those without relatives with energy and resources, or for those who do not even have relatives.

This is not an attack on the individuals in the health care system who work under tight guidelines to get patients into “packages” and quickly out again.

As relatives, we have met both absolutely wonderful people and others who should not have worked in the health care system. It is nevertheless necessary to discuss the health service’s ways of understanding and their dissemination of these to patients and relatives.

Pushing this responsibility onto pressured healthcare professionals without available beds is a bad solution. It must be decided higher up and come up with resources.

It is also a bad strategy to create a system where it is up to relatives to fight against each other for the scarce resources.

Patients, relatives and healthcare professionals are suffering from the current situation. In addition, the tragic events of the autumn have shown that it can also have dramatic consequences for outsiders.

Wished we were going to talk about it

My sister was never a threat to others, but because of her suffering she was a threat to herself.

After spending Christmas in a nursing home, last year she finally got a place at an institution she wanted to go to, and which we thought could help her. By then it was already too late.

These days she should have turned 37 years old. One of her last wishes was that we should talk about this, so maybe someone else would skip the same journey.

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