Athens ESF report/ Part 3: Introduction

This part was the introduction at the ESF in Athens (2006).
This is my personal story about how i became from psychiatric patient to activist.

Then Jan Verhaegh started to tell about his trip across Central Europe, and the things he had experienced.  (READ HIS ARTICLE: Not on the agenda - click on the right side).
And then Marietje  Lemmens told about her experiences.

My part is still a bit of a rough version: It is the preparing document, which contains more information than I actually have said at the ESF.

 

Jolijn Santegoeds: From psychiatric patient to Activist

This will explain to you, briefly, my connection with activism on Mental Health Care & Psychiatry.
I was a psychiatric patient myself.
I was involuntarily institutionalised about 12 years ago, because of suicide attempts and severe self-mutilation (like cutting myself)  I was 16 years old then. And my problems had a lot to do with adolescence and emotional problems in a broken family life.
I was diagnosed with Borderline Personality Disorder and I was admitted, compulsory, to a Psychiatric Youth Institution, and later to a Closed Adult Institution, In both places I received involuntary treatments.

They put me into isolation cells to prevent me from harming myself. It was always a struggle, because I did not want to be locked up in an isolation cell.

At that point I said to the psychiatric assistance: The isolation cell does not make me feel any better. They simply told me that they did not want me to harm myself, and they had no time to constantly look after me. So they were in fact just too busy to care for me. My situation got worse and worse, and I was isolated quite frequently. Whenever they put me in the isolation cell, they took away my clothes and gave me lots of medicines, which I didnít want to take. I said Iíd rather die, and so I kept on trying to harm myself. They injected me with their drugs. And I was screaming, banging on the doors, throwing with stuff, trying to escape, and really harming myself more and more, whenever I got a chance to do so. It was my way of fighting their treatment. I was isolated in the cell for months. Sometimes I was strapped to the bed. Sometimes I was out for a while, but that mostly didnít last long. I blamed the psychiatric personnel and the institution for treating me badly, like an animal. But there was no real functioning and accessible justice-system to make my complaints official, so the problem was not solved, and no-one seemed to know what was really happening... Everyone seemed to trust in whatever the Mental Health Professionals were doing.. I then felt there was no way out, and there was nothing left of me and my life. Being there in psychiatry felt like a dead end.

 On the Closed Adult Institution, when I was out of isolation for a few days, I had a injury on my leg, due to a sports accident in the internal yard: I had a broken Achilles tendon. I was then 17 years old. It hurt very badly, and I could not use the leg, but the personnel and the psychiatrist did not believe me, and they said I was just trying to get attention. For that reason I was punished with the isolation cell again. After several weeks, I finally got the psychiatrists permission to go to a medical hospital, (the psychiatric personnel were all bullying me and laughing at me). But the medical doctors then saw what was happening. The medics really helped me, they first fixed my leg, and then they arranged that the psychiatric ward where I stayed was closed down, because they had neglected my injury and they had not believed me when I said I was in pain. If I had got an infection I could have died there, as they did not believe me when I was in pain.

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 I was transferred to another Psychiatrical Institute and I was then confronted with a new experience.

I was treated more like an equal human being. They showed me that I had certain responsibilities and they made me realize that I had my own wishes and expectancies, and finally they really got a sense of my feelings. This last institution chose a much better approach, and was therefore much better for my Mental state of health.

I learned to get along more and more and I really started to come back to life again and I wanted to get back into society.
For several reasons I left this institution without a place to go to. And then I was homeless for two years, (this is due to another lack of social systems in the Netherlands, but that topic will be left aside now), After all these BAD LUCK and injustices, I found a place to stay, got to study again and now I am spending my time and money at
, for instance, the European Social Forum.

Well, my experience has influenced me a lot. My institutionalisation took place from about 1994 to 1997. It is now 10 years ago. I myself, never expected that this could happen in a (supposedly) well-developed country such as the Netherlands. It was a shock for me. I guess it must be pretty shocking for you as well, to know this is still happening RIGHT NOW in the Netherlands.

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In my opinion: The fact that the first institutions where I stayed, didnít listen to their patients, is mainly caused by a lack of specialized personnel, which is, in fact directly caused by the lack of investment in Mental Health Care.

What I have seen in psychiatry was low-budget housing, filled with about 10 patients, and 2 or 3 professional assistants, who could sometimes hardly keep order. And they tried to keep order: with the daily group-activity schemes, and the excessive use of medication and compulsory methods, such as isolation cells and physical fixation material.

When patients said, for example, they didnít want to receive a certain treatment or medication. They werenít often given much choice and they were mostly forced to the treatment. There was basically no time and no personnel to search for other options than repression, and specialized facilities or constructive treatments were mostly not available. The personnel of Mental Health Institutions mostly don't take more than 5 minutes of their time to make such a decision, either to use force or not. 

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So because of my personal experiences with the Mental health care system, my personal view on Mental Health Care, and also the feedback from my surroundings, I initiated Actiegroep Tekeer tegen de isoleer! in the Netherlands.

This actiongroup is basically against compulsory measures and exclusion in psychiatry in general, but the name of our organisation literally means: Resistance against isolation cells. These isolation cells visualize an ethic question, whether exclusion can be a form of care, and this makes the problem of compulsory methods quite easier to understand for a broader public. The name Tekeer tegen de isoleer! Therefore, is very symbolic. In the Netherlands we say: Care should open doors, not close doors.
We would like to translate this for the ESF as: Mental health care should build bridges instead of walls.  

Well, action group Tekeer tegen de isoleer! is completely run by volunteers, mostly ex-clients of Mental Health Care, and our targets are to stop the harm thatís done by psychiatry, and to improve the quality of life of the psychiatric patients.

Our main activities with Actiongroup Tekeer tegen de isoleer! are to start a public debating about the contents of Mental heath care, and to inform the society about unhealthy treatments in psychiatry. We are demonstrating and handing out leaflets on the streets a few times a year. And by doing so, we want to create awareness about what is happening: We want people to know that Good Mental Health Care should be about CARE and ATTENTION and not about RESTRICTION and EXCLUSION.

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If we take a closer look at the practices of involuntary treatment we see many misconceptions and mistakes. Involuntary treatment is only legal when other, less restrictive treatments have failed. But the actual practice (in the Netherlands) shows that involuntary treatments happen excessively, and not only as a last resort, but also as a first resort because of the lack of personnel, which makes it impossible to provide alternatives. Sometimes compulsory treatments (in the Netherlands) are even used as punishment for certain conduct or behaviour-problems.

Studies on patients perceptions of involuntary treatment,  point out that compulsory treatments can, among others, cause feelings of humiliation, loneliness, and anxiety. A lot of compulsory methods are described by patients as traumatizing.

The psychiatric profession should listen to what the patients think of their treatments, and deal with it seriously. Because when the professionals, when using compulsory methods, have no regard for the feelings of the patient, it is very HARD for the patient to communicate on other traumatizing events in the patients life as well. When professional care-providers harm patients, instead of healing us them, the patients feel very misunderstood and lonely. They donít trust the personnel anymore, because they don't want to be harmed, and they get scared.

Compulsory measures are therefore painful oppositions between targets and methods within psychiatry. Patients and staff should Cooperate on the treatments, and should not oppose one another. ACTIVE PARTICIPATION and EMPOWERMENT of the patient are KEYwords which should be especially used in the context of Compulsory methods.

In a case of involuntary treatment, the psychiatric professionals should have to try really hard, to eliminate the patients specific objections to the proposed treatment. They should offer many choices between different varieties of treatments to meet individual needs, instead of giving just one option, and one choice: to cooperate or to be forced to this kind of treatment.

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We think this painful opposition between targets and methods, is not caused by bad intentions of the care-professionals, but we think it is caused by the lack of personnel. And maybe the lack of specialization.

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To be able to communicate with the patient and to show social compassion and support, the psychiatric assistance should always have the ability in time and scheduling, to spend time with patients, and to talk about different treatments,

This gives the Psychiatric professionals also the ability to Prevent incidents, which would be the best alternative treatments for struggling, cells, and drugs. Prevention means: that Personnel picks up the early signals of a crisis, intervene less restrictively in the early stages, and prevent the real crisis.

This is possible with a very good communication between patient and his surroundings, and with the usage of well-trained or specialized personnel. (which includes people with experience based knowledge)

We know that this kind of care cannot be easily provided on a low budget, and we think there is a very high need to give more TIME and ATTENTION to the patients in psychiatrical institutions.

This problem is severely influenced by the neoliberal agenda, which tries to lower the costs of nearly al forms of care. Well, we can say: Psychiatry needs a very big investment!

Actiongroup Tekeer tegen de isoleer! therefore also tries to make clear that the problems Inside Mental Health Care are urgent for policy-makers. We plead for doubling the investment in mental health care. Ė Invest in more personnel to practice the better alternatives such as dialogue with the patients.

Ė And we also plead for more investment in the use of experience-based knowledge of former patients, who can usually explore a lot of aspects of their mental ill health. And their knowledge can be of great value to the research on mental ill health and on mental healthcare.

Our networks also comprises several Mental Health professionals and students. We want to continue debating about the improvement of psychiatric care.

We realize that the psychiatric professionals have good intentions by working in mental health care, These workers are doing a really tough job. With lots of misconceptions at all levels, and little budget to spend on care, they are doing the best they can. We know that. We want to work on the solution for this painful situation all together.

We think the first step is: To double the investment and try to stop compulsory treatments.

So Actiongroup Tekeer tegen de isoleer! in the Netherlands, is trying to build a bridge between mental health care, society and politics in The Netherlands. And also at the European Social Forum, we want to set a European view as well.

 

We provide all of our gathered information on our internet website: www.mindrights.nl and also at our official weblog : http://www.tekeertegendeeissoleer.web-log.nl  
Unfortunately most of our website is in Dutch, and we have not
been able to translate everything, except for a few  international announcements.

 

Please. Don't hesitate to contact us
tekeertegendeisoleer@hotmail.com

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Contacts Information:
initiator Actiegroep Tekeer tegen de isoleer! &
former psychiatric patient



Jolijn Santegoeds
Eindhoven,
The Netherlands
tekeertegendeisoleer@hotmail.com 

languages: EN, NL,
DU (50%), FRA (50%).

(also Bachelor of  Sustainable Engineering/ Environmental-directed Materials technology, graduated November 30th  2005)
 

More information about
Actiegroep Tekeer tegen de isoleer! 
 is available on
our full website http://www.mindrights.nl
(in Dutch language)

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Other Participants - ESF, Athens:

Jan Verhaegh :
European Network of Users and Survivors of Psychiatry (ENUSP

READ HIS ARTICLE:

 Not on the Agenda (2005)
Clients and Psychiatry in Central Europe:

 

Marietje Lemmens:
Founder of a Dutch Self-Help Network: Stichting Time Out, especially for women who have been sexually abused or traumatized.
Statement Women Organisation Time-out  

This very successful Self-Help Network is based on connecting women in sexual disstress, which gives recognition, empowerment and support to these women. This helps the women to get along with their lives and prevents the women to get admitted to unspecialized institutions, which may lead to another trauma. 

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Other Links:

Nederlands Sociaal Forum (NSF)
European Social forum (ESF)
World Social Forum (WSF)

European Network User Survivors Psychiatry (ENUSP)
World Network Users Survivors psychiatry (WNUSP)
Stichting Time-Out (NL)

MindFreedom (International)

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flyers and pictures:

 

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Informative:

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Other activities Actiegroep Tekeer tegen de isoleer! - The Netherlands