“I fear I will never make it out of this”

Image: Astrid Weber and Annika Alexandersen

KBT has gathered patients’ experiences of compulsory care in outpatient treatment on behalf of the University Hospital of North Norway (UNN). The findings are revealed in the report “Jeg er redd jeg aldri skal komme meg ut av dette” [I fear I will never make it out of this].

Astrid Weber and Annika Alexandersen have worked with Dagfinn Bjørgen to conduct the survey and write the report. We asked Weber and Alexandersen about the project and its findings.

 

Image: Illustration from the TUD-report.
Illustration from the TUD-report.

The background for the project is that Tromsø and UNN has a project about compulsory care in outpatient treatment (TUD) that has previously been through several stages. They wanted a User Interviews User-survey in order to increase their understanding of how TUD is experienced, and of patients’ perception of the treatment. The project’s problem definition was “what are the patients’ experiences with TUD in mental health care and involved services?”

The patients who showed up to the interview expressed a large degree of perceived unfreedom, and that the personnel are not good at gathering their feedback.

– The interviews provided us with a substantial amount of interesting findings, but also a lot of tough material. The patients reported a lot of unfreedom and coercion, which wasn’t all that surprising, even if compulsory care in outpatient care is supposed to be more lenient than in institutions. If the personnel do not provide room for the patients to safely report on their experiences with TUD and what they have a need for, it won’t appear in the assessment of what is most intruding. Mandatory medication appears to be the biggest area of conflict.

Annika and Astrid tell of a good collaboration between UNN and the municipality. They have also received input from the competency group, in which several people have personal experience as patients of TUD, and is part of the project.

Image: Astrid Weber and Annika Alexandersen
Astrid Weber and Annika Alexandersen holding the report.

Feeling coerced in voluntary care

A total of 12 informants were interviewed in the project. It wasn’t easy for them to talk to Astrid and Annika, as there was a general fear that what they said could come to be used against them.

– Three of the participants had transferred over to voluntary care, and we found that this leaves a mark. The feeling of unfreedom is especially apparent when it comes to the topic of medication. Although these patients were located in the voluntary department, they did not see their medication as voluntary.

 

Challenging the mental health care

The findings are sorted into topics like “supporting the recovery process” and “The need for autonomy”. The team has put forward a list of recommendations and discussed the findings in relation to human rights and the national plan for increased voluntary treatment in health care.

– When we look at the data through the principle of least intrusion and the right to health care, it appears that the voluntary department is poorly tailored to fit each individual. It may be because the health apparatus face less accountability in this department. We were surprised to find that none of the patients were familiar with the plan for the compulsory care. It was also unclear for them what exactly TUD meant for them, and what it would take for them to be released from TUD, which in turn made it difficult for them to work on their issues.

The findings in the report were presented at a dialogue conference September 9, where patients, relatives, personnel and municipal representatives all attended.


Limited research on TUD

The authors of the report explain that TUD has previously received little attention.

– We can’t make any generalizations about other places, as this is a qualitative survey and evaluation exclusively on circumstances in Tromsø, but there is no reason to believe that this can’t be happening elsewhere. TUD has gotten little attention, and there’s little research on the patients. What is clear is that patients are deprived of their autonomy even in areas outside of TUD.

Report (Norwegian):

Bruker Spør Bruker-evaluering – «Jeg er redd jeg aldri skal komme meg ut av dette» – Evaluering av Tvungent psykisk helsevern uten døgnopphold (2016)

Text: Ingvild M. Kvisle
Translation: Lasse Barr
Illustration: Alexander Julian Karlsen
Photo: Dagfinn Bjørgen

About Ingvild M. Kvisle

Works as a project team member in KBT. Works with User Interviews User, dialogue meetings, webpage and social media.