Presentation text Experiences and Advocacy 24July

Here you will find the text of my presentation "Experiences and Advocacy in the Netherlands" which I held in Kyoto today, 24 July 2015. This was organized by the Japan National Group of Mentally Disabled People (http://www.jngmdp.org/ ) in an independent building of the Ritsumeikan University, in cooperation with the Research centre for “Ars Vivendi: Forms of Human Life and Survival” , http://www.arsvi.com/a/index.htm .

Konichiwa
I am Jolijn Santegoeds. 37 years old, and I come from the Netherlands. It is my pleasure to be here with you, and tell something about my experiences and my work.

Let me tell you about my experiences:
Some 20 years ago, in 1994 when I was at age 16, I started to have psychosocial problems. and at some point I did a suicide attempt. I woke up in the medical hospital, and my parents were afraid that I would commit suicide. The doctors advised to put me in a psychiatric hospital, and my parents gave consent. I didn’t want it, because I was very scared of the world.

In the psychiatric institution, I felt miserable and I tried another suicide attempt, and then I was put into solitary confinement, because I was called “a danger to myself”. That was horrible. And afterwards, I made another attempt. Then the psychiatrist decided I had to be solitary confined for a long time, to prevent me from possibilities to harm myself. I still continued to harm myself, and this got worse and worse. The repression also got worse and worse. I was solitary confined, strapped on the bed with restraint-belts, forcefully drugged, and they even performed body cavity search, which means they checked in my intimate parts to see if I had something harmful with me. This was done by force, and it was very degrading, like rape. Of course this didn’t help me, and this struggle continued for almost 2 years.
The psychiatrist and nurses were not listening to me. My diagnosis was Borderline personality disorder, and they thought I was only trying to get attention. This also resulted in medical neglect. When I had broken my Achilles tendon, they did not believe was in pain, and I was not taken to a doctor, but instead I was forced to walk. When I finally was allowed to see a medical doctor, this was found to be neglect, and this eventually led to the closure of the ward, and my transfer to another psychiatric institution in another city. There I was treated with more respect, and not solitary confined all the time.

Then my recovery started. I established contacts with peers inside the institution, and they became my friends, and I started to see a new perspective. I felt no longer like an alien. I stopped self-harming, and wanted to live outside the institution.
Because I was no longer self-harming, I was able to successfully challenge the court order for forced treatments, and the Dutch review board decided I was allowed to leave. But the psychiatrist found that I hadn’t completed treatment, and wanted me to stay in the institution voluntary, but I did not want that. The psychiatrist did not support my leave. I had no support, but I still left, and then I was homeless for about 2,5 years. The homeless people treated me with more respect than the nurses, and said “if anyone hurts you, just tell me, I will kick them”. That made me feel safe and not alone. They treated me much better than the professional care-providers.

I made my way up. Around the year 2000, I finally managed to find a place to stay and then I started studying, first finishing high school, and then continuing with university studies on Sustainable Engineering. I managed to build my life on my own.

I was still angry about what psychiatry had done to me. I wanted to make a complaint and go to court to prosecute the doctors. I found a lawyer who was willing to help me. My friends knew this, of course.

Then, during my studies, one friend send me a text message, saying that at the same child institution, a boy was put into the isolation cell, because he had taken the desert from the table to his room. This made me angry. This had to stop, and I wanted to do something, but I didn’t really know what to do. But also, I did not want to do nothing about it. So I took the train to the city of the institution, and on my way I was thinking very hard to find something I could do. And then I thought about the word “public prosecution”. I then decided to make it public, and I went to the supermarket to buy a marker and papers, and tape. I made some slogans, copied them, and spread them on little posters in the neighbourhood of the institution and in the city centre. The next day it was in the local newspaper: “anonymous protest against seclusion in psychiatry”. I was happy to see this result of my spontaneous action, and I decided to continue like that. My peers and friends supported me.

Then, around 2002, I started an informal “action group”, called “Protest against isolation” (in Dutch: Actiegroep Tekeer tegen de isoleer!) and I organized several protest marches and spread more posters and leaflets against forced treatments. I made a website, and I was invited to some conferences on the issue of mental health care and forced treatments, where I spoke my opinion, and explained that coercion was only making it worse. What I had endured was no mental health care, but abuse.

I protested against solitary confinement as a key of my activism, because it was easy for outsiders to see that this is not real care, and from there we could expand this view more easily, and say that also medication is a chemical restraint, quite similar to solitary confinement.

I was happy to find some support with a group of progressive nurses, who also felt that psychiatry needs to improve. They felt that they had no time to provide good care, and wanted to change the system to be able to give attention to the persons with psychosocial problems, which showed an overlap to my goal against forced treatments.
Then this group of nurses started an official project to reduce solitary confinement. This first started in a few institutions in 2004. Between 2005 and 2008 the government gave almost 7 million euro on a project basis for this project, which was called “project coercion and compulsion”. During these years some more institutions joined the debate, and tried to find alternatives for solitary confinement. I was actively involved in this project.

In 2008, a man died in solitary confinement, because he suffocated in a sandwich with peanut butter, due to the medication. His friend notified me, and I made it public with consent of the friend, who said that the guy was just like me, also very much against forced treatments. I emailed many people, including the media. His death caused quite some debate and outrage in the community, and then there was a debate in parliament, resulting in a structural budget for the project to reduce coercion by the institution, which was 5 million euro per year, and all big psychiatric institutions had to join and show their plans. This was mandatory for the institutions. The project money only went to institutions, not to the user movement, although several user organizations were actively participating and giving input. I was still actively participating in this project.

The goal of this national project was set by the national mental health umbrella organization (of professional care providers only, called GGZ Nederland). The goal was to reduce seclusion with 10% per year. And various guiding principles, key slogans and initiatives were developed, such as:

-The key slogan: “From coercion to intensive care / from control to support”
-Prevention is better than repairing
*A crisis gradually develops, and early signalling of distress is important to prevent escalation
*Contact and communication is key, to be able to see the early stages of a crisis
*the hospitality concept: “the first 5 minutes” : the first impression is crucial for establishing relationships, and it is important to make a friendly contact upon arrival, to avoid starting the relationship with a fight – So in the Netherlands, the old routine of standardized seclusion upon admission for reasons of “observation” is therefore now abolished and prohibited.
-De-escalation is also key. It is possible to deal with a crisis situation in another way. Instead of overpowering the person, it is possible to provide support, such as hanging a punch-bag to allow the person to be upset, or to communicate to calm a person down. This does need skills, flexibility and creativity of caregivers.
-Also, alternative options and facilities are needed, which are more focussed on wellbeing and recovery. Since in traditional psychiatry only little meaningful activity was presented, or mandatory group schemes which leave no room for personal feelings, crisis comes more often, but when a more personalized approach is taken, which takes personal needs into account, escalations and crisis can be prevented. For example: not pushing a person with depression to follow the day programme, but take time to see what the person wants, and what would help to feel better and not so depressed.
-Friends and family can be of support, since they can provide love and understanding at a level that nurses cannot achieve, which can support wellbeing and de-escalation. They have knowledge of what can help in de-escalation. For example, bringing someone his favourite meal.

These are all officially identified Good Practices to reduce and avoid coercion, which the project to reduce coercion has brought forward.

Sadly, these targeted projects and the funding have now been incorporated into a general budget for care-quality, and the specific attention for the issue of seclusion seems to get less attention in many institutions. At those places we see again a rise in seclusion.
But some other institutions have joined forces. Since 2009 the good practices were included in a developmental programme called “The development of High and Intensive Care”, which aimed to collect and combine all good practices, to realize an end to seclusion. I have been actively involved from the start of this development, and cooperated together with VUMC Medical University in Amsterdam and several mental health care institutions in the South of the Netherlands, which formed the “Southern Network for Development of High Care”. In the past 2 years I was less involved (or rather: less invited as a consultant). Now in 2015, 2 institutions have managed to reduce solitary confinement to nearly zero. But there are about 55 mental health care institutions in the Netherlands who have isolation cells, so there is still much work to do.
Unfortunately, the projects to reduce seclusion do not include the reduction of forced hospitalization or forced medication and other forced treatments. There is no underpinning CRPD-based view or awareness.
Of course I am trying to change that by raising awareness.

In 2008, before the development of High Care, a law reform process on forced psychiatric treatments started. 3 law proposals were designed:
1.a law proposal on “Mandatory mental health care”
2.a law proposal on “Care and Coercion”.
3.a law proposal on “Forensic psychiatric care”

The goal of this reform is to harmonize the laws to enable flowing of persons with psychosocial or intellectual disabilities from one system to the other. In these laws, the court will decide the scope of forced treatment, although the judges are not doctors.
The place or location of the treatment can vary, depending on the conditions of the treatment order and the so-called “need for protection” of the person during the treatment, so the person can be transferred to higher or lower security settings on the judgement of the psychiatric staff, and the treatment order is portable. The judge decides on a treatment plan and indicates the scope of treatment. For various steps of treatment, there are conditions to the level of security, which is called “stepped care”. It is claimed to enable less restrictive forms of forced psychiatric treatment.

In the law proposals, the scope of interventions is not defined or limited, and is described as : “any intervention in the care-field”, so there is no limit, anything can be done to the person anywhere according to the law.
Shockingly, the law-makers also claim that the use of forced treatments, such as physical restraints in the community is less invasive than in a hospital, such as tying a person with intellectual disability or dementia up in a chair in their own home at moments of distress, which is amongst the most primitive practices in the world. Obviously, the mental health care system was in fact established with the goal to prevent these primitive practices of restraining persons with psychosocial or intellectual disabilities in the home situation.

I gave a lot of feedback to the law-makers, explaining the CRPD, and the need for alternatives to forced treatments, but this wasn’t picked up. I realized that I couldn’t expect the law-makers to come up with a good proposal, because they simply do not have an understanding of the social model of disability, and are fully in the medical model. So then I decided to try to make an alternative law proposal by myself.

In my opinion, the goal of the law is not: how and when to perform forced treatments, but : how to help a person in a crisis situation. So we need to focus on building social solutions to support wellbeing in the person’s life.

In 2009, I identified Family Group Conferencing as a possible solution. Family Group Conferencing is a voluntary consultation process around a key question in one’s life, for which the main person invites the circle of people he or she trusts, to think together about desirable solutions. Last week there was a training seminar of 4 days in Tokyo on Family Group Conferencing, so I think some of you already have a clear idea of what this is. I should say that the word “Family” relates to social family, which means the people you feel connected with, so it is also referring to friends and peers. Together with these people, it is possible to think about desirable and helpful solutions to live through a crisis situation, instead of starting undesirable forced treatments. The main person and the circle of persons close to him or her can identify together what would be helpful. This supports the main person in making decisions about what he or she would like. And in this way, a plan can be composed to deal with the crisis or problem in a good way, with respect to the person’s needs, will and preferences. So this is a practice of Supported Decision-Making for persons with psychosocial disabilities or any other disability, and that it has a great potential to bring real helpful solutions in the person’s life.
Currently there is a pilot project in the Netherlands with Family Group Conferencing to avoid forced psychiatric treatments, and we expect the final report after the summer of 2015, so in a few weeks.

Yet, despite the CRPD and the many identified good practices in the Netherlands, the law-makers still do not want to abolish forced psychiatric interventions. They only included in the law proposal that the person can get the opportunity to make their own “family group plan” by consulting with their network.
It is positive that the law-makers recognize that Family Group Conferencing can be an option to prevent forced treatment, but the rest of the law proposal is still unchanged. So I am not happy about it.

In 2010, I was invited to present the model of Family Group Conferencing to the Mayor of Eindhoven, the city where I live, and when I stepped into his office, my family was sitting there, and it appeared to be a kind of surprise party. The Mayor of Eindhoven gave me a reward for “groundbreaking resistance against isolation cell practices”. It was 2500 euro for my volunteer advocacy. That was nice, but I felt a bit weird. It was a recognition for my advocacy work, while my complaints, which are at the root of my advocacy, were still not recognized, even despite the fact that I have always been trying to find access to justice.

Since 2002, I have been trying to start a complaint procedure against the psychiatric institution. I had a lawyer, and we took some steps, but unfortunately in 2008 he fell ill with a brain tumour, and was no longer able to assist me. And unfortunately, it appeared impossible to find another lawyer to take on my case, because there are no lawyers willing to deal with my case in the Netherlands, which is very frustrating.
I made many many attempts to find a lawyer, even public calls on internet and in a publication in a lawyer magazine, but I didn’t succeed. This was very depressing.

Then in 2010, I turned 32, and to me this meant that I was now fighting for the majority of my life time against the harm that had been done to me and others. Despite all my efforts, not even an investigation has ever been done to my complaints. I felt very sad about the lack of rights, and I decided to send my complaints to the UN Special Rapporteur on Torture, who followed up on my case in 2013, together with the UN Special Rapporteur on Health, by sending a Communication to the government of the Netherlands, asking for investigation of my case and to remedy the human rights violations. This was the first time that an official body took my complaints serious, and I was very happy about this achievement.

I had much faith that the State of the Netherlands would be sensitive to the UN Communications of the UN Special Rapporteur on Torture and the UN Special Rapporteur on Health. But shockingly, the state of the Netherlands did not respond positively, and claimed that I had never made any complaints, so they saw no need to start an investigation after such a long time. Now, it is almost 2 years later, and still I haven’t found access to justice. The State of the Netherlands remains silent towards my complaints of torture and ill-treatment in psychiatry.

But I won’t give up. Amongst users and survivors in the Netherlands there is a lot of support for my work, and that keeps me going.

The Netherlands has not ratified the UN CRPD yet, which is also very strange, considering the legacy of freedom and human rights in the Netherlands. 25 out of 28 European countries have ratified the UN CRPD, and worldwide there are 157 countries which have ratified the CRPD. But not the Netherlands.

Together with several other Disabled People’s Organizations a DPO umbrella organization was established to push for ratification and implementation of the CRPD, called the “Coalition for Inclusion”. My official organization Stichting Mind Rights (which followed from the informal protest group in 2006) is a member of the Coalition for Inclusion. And within the Coalition, the rights of persons with psychosocial disabilities are not forgotten or excluded, which is very positive. It is a pleasant organization.

Also the Dutch platform on mental health care (LPGGZ) is part of the coalition. This Dutch Platform is a mixed organization, not only users, but also family. The Dutch Platform has more members than my organization Mind Rights. My organization Mind Rights is another type of organization under Dutch law: not a union, but an awareness raiser, we do not have memberships, but we do have supporters who can contribute in various ways. So often it happens that politicians value the voice of the Dutch Platform more than the user-survivor organizations who are not mixed or specialized and therefore smaller. So it is still hard to have a voice of our own as users-survivors, but luckily, the Dutch Platform is cooperative towards me and the organization Mind Rights.

I have brought some leaflets of Stichting Mind Rights, against forced medication. By such type of leaflets we try to bring discussion and awareness. By being visible and out in the open, we aim to give support to users and survivors, who may feel like they are alone against the system. Mind Rights focusses on abolition of forced treatments and nowadays also on promoting the UN CRPD.


So this is the scope of my advocacy in the Netherlands, and user-survivor involvement in policy making in the Netherlands. It is a huge struggle, and it moves very slowly, inch by inch, and it can be hard, frustrating and painful, but it’s definitely worth it. It is about our human rights, and that is definitely worth fighting for.

I thank you very much for your attention, and I would now like to open the floor for questions.