European situation - ENUSP day 2

Day 2 of ENUSP Empowerment seminar in Zagreb

I’m back in my strength now since the afternoon, and I absolutely feel good now. I had a great evening. It took a while, for some reason my inner life wasn’t at peace the last few days, but I’m empowered now :)

This morning I got up early (before 7), because we wanted to go to the post office before the seminar started. At a little bit past 9 Michal and I were back at the hotel and the seminar started.

We used the morning session to have an open thematic dialogue, to hear about the themes that are actual in each country.

Eric Olsen told us about the situation in Denmark. There has been a research that gave evidence that people are dying from medication. There are more deaths in the community than in hospitals, and especially more deaths when psychiatrists are involved in community care. This was major front page news that shocked the entire country: “life-threatening medication”.
Because of de-institutionalization in Denmark the big hospitals were dismantled. There were many long stay wards where people stayed average 19 years. Many beds were closed down, and the users got out on the streets. Then there were elderly homes turned into psychiatric housing to take the users off the streets, but users have no free choice in psychiatrist (there is generally 1 psychiatrist on 800 users). Now the question is raised: How many users die from medication? Now there is a demand for an autopsy in every case of death of a user. Of course multi-medication has the biggest risk, so there is now a new awareness to calm down with medication, and to only give one drug at a time. So the medicating is now being reduced. This is of course a great development.

Then Stephanie told about France, where there has been a law reform in 2011. Before this new law, users could only be treated without consent IN hospitals, but the new law now also allows for outpatient forced treatments, which is euphemistically called “community care” (but it is a forced community care order). If the person really resists firmly, the person will be “kidnapped” and taken to a psychiatric hospital for forced treatment. This all is fully against the CRPD.
Stephanie is involved in a monitoring commission for hospitals and patients. In France there is a law that prescribes that monitoring commissions visit every institution and every patient (user). There are now hundreds of boards who do these investigations, and that is quite effective. Stephanie launched her suggestion to collaborate and research on how this is arranged in other countries.
Also in France one of the themes is medication and the lack of information on side-effects and especially on the effects of combinations of medications.
Stephanie also mentioned that the Council of Europe has issued recommendations for mental health laws, and their paper really opens the door for outpatient forced treatment.

Then Eric made a remark on Norway, where there has been a research on how psychiatric detention is divided over the regions. It appears that this doesn’t depend on the amount of hospitals or community care, but the rate of non-consensual treatments are the highest in regions with a lot of psychiatrists. This shows that forced treatment is not a need, but a habit. Which indicates that community services shouldn’t be run by psychiatrists, but by social care.
We discussed a bit on outpatient forced treatments, and how forced treatments are now invading the homes of the user. This means that these users have no more safe place to call home, no refuge, no release, which makes them mentally homeless.

In the Finnish law there is no location mentioned for the application of forced treatments.
Maths Jesperson added: New York was the first state to have a law on forced outpatient treatments in the community. In 1990 outpatient force started in the UK.
Psychiatry has been reformed in the past 30-40 years, from a view that saw users as persons in need of help, towards the current perception now, that users are irresponsible and not in charge of their own lives. But evidence based research shows no outcome of all the forced treatments: it doesn’t reduce danger and it doesn’t help to get better.

The book Tranquil prisons of the Canadian author Eric Fabris is recommended on this subject. Tranquil Prisons is a rare academic study of psychiatric treatment written by a former mental patient. (http://www.utppublishing.com/Tranquil-Prisons-Chemical-Incarceration-under-Community-Treatment-Orders.html)

It was also noted that Mental Health Europe did some research amongst their members by a survey report about new services, but they didn’t include data on laws and evidence.

Mario from Croatia told about a new book on Croatian mental health care that has one article on user/survivor research in it, which says that 95% of the users is satisfied with the current model, including forced treatment.
This lead to responses from other participants, because this is a typical case of selecting users for research (or lying), which we see more often. In some countries the state provides education for becoming a “user expert”, which is also manipulative. We already ARE experts by being users.

Then I told about the Netherlands. The Netherlands didn’t ratify the CRPD. Yesterday I had already told about Dutch law reform (the Dutch draft law is quite similar to France, with forced treatments in the community, and also expanding the definitions and possibilities for forced treatments) and I had told something about my alternative model, based on Family Group Conferencing (supporting users to make their own plan). This alternative will become an option in the new law, but we advocate for abolishing force, so the right to make an own plan should not be just an option, but it should be the core principle of a law dealing with mental health crisis.
I also mentioned the lack of lawyers who are specialized in users rights, which has severe implications for the rights of the users (and maybe this is one reason why the CRPD isn’t ratified by the Netherlands, because there isn’t much pushing from the legal field).
I also highlighted the development of High-tech isolation cells, which is a cell with a touch-screen, a toilet and coloured lights, euphemistically called “sensory support rooms”. These developments are dangerous, because it’s basically misleading and covering up the real abuse: the person is locked up, but now it’s an expensive cell, so it doesn’t seem so inhumane, but it still is. And I think we should promote good practices actively, otherwise the CRPD may lead to another word-game, where psychiatrists will claim that “treatment in a sensory support room” isn’t solitary confinement, but it still is. Also the technological lobby is strong and resourced, so we need to be on top of this now. I find it important to use human language instead of language that is segregated (like psychiatric jargon, diagnosis and many laws), because we need to avoid the shifting of words. I’d like to say “sad” instead of “depressed”. I think we should address feelings, because it is part of life and major for mental health, and that taboo should be lifted.

In Finland there are also plans to “humanize” forced treatments.
Stephan from Romania added that in Romania there is a psychiatric hospital that has a “saloon” for ECT (electroshock-treatment). He was in contact with WHO to try to abolish ECT, with little result. (I said that I think that if there is only 1 person who likes it, WHO doesn’t want to abolish it because they see it as treatment, which is surely a wrong perception. War is also illegal, despite the fact that some people want it)

Tomas and Lupe from Spain told us that there is a strong user movement in Spain, with several user organizations, and also other organizations are supportive and open to collaborate with user organizations. The user movements are independent, not within an umbrella organization. It is needed to develop a survey, to study, collect data and document what’s going on in the ENUSP-member-countries. To fund a professional user/survivor capable of doing such research would be a priority, because evidence is needed. So how to find decent funding? Or partners, but that is also hard.

Maths Jesperson from Sweden told us about the big success in the fight against ECT in Sweden. The Swedish TV did some research into ECT, to find pros and cons and evidence. Doctors said memory loss could occur as a side effect, but it was said to be minor loss of maybe 1 or 2 months of memory. Users being interviewed showed very severe memory loss, one lady couldn’t remember anything about her kids growing up, another forgot all about her study-trips. The interviewed professor then acknowledged that this is a tragedy and said “we’re sorry”, so he didn’t deny it and tried to soften it. But the public found this unacceptable. ECT is no longer socially accepted in Sweden. This was therefore a big success.
Maths also told about how psychiatrists sometimes start their own user-movement: they select ambassadors who are then offered a job inside psychiatry. This is one form of controlling the users voice.
A second form is a very big user movement, which was a state initiative for an umbrella organization, which includes only a few userled organizations, many conservative family-organizations and diagnostic organizations (mainly all GAMIAN-members, who never heard of ENUSP). This big organization doesn’t come with firm statements and doesn’t put conflicting topics on the agenda (such as forced treatment in the community).

Michal from Czech Republic also highlighted the difficulties in collaborating with parent- and family-organisations, because their perspective on treatments differ from the user perspectives. Generally parents and family are unaware of the impact of psychiatric suffering, because they have no experience with it themselves.

By now we already see that differences aren’t explained by the traditional image of East versus West. Diversity isn’t linked to geography but merely to common attitudes towards freedom and so on.

Then Piotr told about the situation in Poland. In 1993 there came a new modern patterned system in a west way (which was mainly inspired by the Netherlands and the UK). There is no outpatient force; forced treatments are done inside hospitals. After release the person is free. However, ambulatory treatment and social services are similar as hospital treatment. Once you go in, you cannot go out. It’s a kind of trap: being guarded without a guardian.. So law is law, and practice is practice.
Poland has a weak and poor user movement, which is open to all who is willing to support, and mainly has an educational approach. They cannot say “don’t take medication” but they can educate and say: “Doctors make profit out of medication”. But there is good and bad medication.
A user movement needs to be strong, to avoid that users are replaced by “trained users” and/or GAMIAN. Some organizations are just puppets, made out of government friends.

In representation all opinions are true, and some things may need to be addressed more widely; medication is a choice, but no force. We do not need to “defeat an enemy”, but it’s about learning to represent.

Timo from Finland mentioned how multinationals are now taking over sheltered housing units for profit.
ENIL (European Network of Independent Living, www.enil.eu) stated that any institution is a breach of rights.

Maths from Sweden said that in the past 20 years ENUSP didn’t have much money, but we do have intellectual capital, which enables us to speak out and to argue statements. It could be a priority to focus on deaths in psychiatry, as a strategic way to go, because 100 years ago the life of a mental health patient was equal to average life expectancy, but now users live 20-25 years shorter. Psychiatrists say this is caused by a bad life style of the person, but we know that medication disturbs the metabolics, and psychiatry is causing a bad life.

As a last contribution in this session, Marina from Greece told about how services and NGO’s take as much as they can, but exclude the big mental hospitals. Medical services only give generic medication (here take this) and the economic crisis isn’t doing any good. The right wing (nazi) is increasing and violence towards immigrants and dependent persons is increasing. Psychiatrists are the ones who need to give permission for gun possession, and they seem to allow this at large for violent citizens. On the other hand, this also leads to more solidarity in the community. Organisations try and do their best to offer a safe place and to talk. In a way this is a chance to discover society again: offering free help, even free medication (recycling leftovers), voluntary doctors, houses, activities and so on. There is a need to have more guidance on when treatment is torture.

It was a lot of information to take in, but it was really interesting to hear what’s going on throughout Europe.

Then we started with the workshops, which were divided into 3 themes:
1. Fundraising and preparing Global Assembly
2. Communication (internal and external)
3. Lobbying and representation

I was in workshop 3: Lobbying and representation. Because we were in need of another working space, our group of 5 moved to the lobby, which we thought was logical regarding our subject ;)
We first studied the information provided and then made a kind of agenda for working on several topics after lunch.

Then it was lunch time. We had enough time, so I first went for a walk on my own. I still had some agitation inside me, and I really needed to walk it out. I was just loaded with emotions, not directly linked to the seminar, but more personally (I experience some powerlessness over my own life again, due to some social circumstances in my life, basically because I can’t find a lawyer for my personal case of psychiatric torture (like Dutch lawyers don't care, so then what do rights mean?, and I'm trying to get access to justice for 18 years now, it's complicated, I never quit), and on top of that I’m excluded from my friends and social life for quite some time now, for bureaucratic reasons, and this sometimes makes me unable to offload my stress, so then it stays in, and then it bothers me, making me feel like I’m going to explode... Even after some months I can’t get used to being expelled from the place I always used to go to, with such unfair reasons, it’s really hard, so I’m carrying this weight with me, and sometimes that’s tough, and I feel like I don’t have much reserves.. but anyway, I’m a survivor, so I know what to do). I managed to keep these emotions separated from my work, and taking a walk in sunny Zagreb did help to ease my mind. When I returned I had a nice lunch, and I really enjoyed the social atmosphere of the conference.

After lunch we proceeded with our workshop on lobbying and representation. We drafted 2 templates to report on events and projects, and defined some suggestions for guidelines on collaboration with other organizations.

We were supposed to be back in our conference room at 5 pm for the conclusions of the day, but the schedule was changed and we will report tomorrow morning.

So then we had some free time, and 4 of us went to the city centre, where we suddenly saw a very nice kinky shop and spontaneously I bought a very nice dress. We had a drink on the terrace and then went back to the hotel, to meet the others to go for a joint dinner. We went to an Italian restaurant, and we had so much fun! Besides the really good and inspiring conversations, we really laughed and laughed and laughed. I feel absolutely great now. And not as tired as you would expect at 3.30. But anyway, I’m off to bed now. Tomorrow we will just have half a day of work, and then everyone is leaving again. Many of us have a stopover Munchen, and so do I, so that is probably not going to be boring. Now it’s time for some sweet dreams again.