5th European Conference on Mental Health
Door: Jolijn Santegoeds
24 September 2016 | Tsjechische Republiek, Praag
On Thursday morning 15 September 2016, I started my day with a delicious breakfast. After that, I took the cable-car down to the other part of the hotel, where the conference venue was. There were about 400 participants of about 40 countries. Most of them were mental health care professionals. I guess there were about 10 users/persons with lived experience, and a number of them were from AA (Anonymous Alcoholics).
At 9 AM the conference was opened by a violin player, and then we were welcomed by Lauri Kuosmanen, on behalf of the conference organization.
Then the Czech Deputy Minister of Health welcomed us, and spoke about the importance of mental health and care, while referring to the high number of alcoholism in Czech Republic. She appreciated the Journal on Addictology, which is originally in English, but has all summaries translated in Czech (No.2, June 2016). Unfortunately there was no room for questions to her.
After some practical announcements, and another piece of violin music, the conference program really started.
The first Keynote speech was from Arman Alizad from Finland, who is a documentary maker (and well-known for the TV-series Kill Arman). He told about his work. He has made several documentaries on painful themes, such as child labor, life in extreme poverty, in favelas, prison-violence, and he raised attention to the social dimension of wellbeing.
I liked this message.
Then Clive Adams gave a keynote speech on the Cochrane organization, which aims to systematically review mental health care research and studies, and gathers and summarizes the ‘evidence’.
I found this speech significantly less inspiring than the previous speaker, and I am quite skeptical about this research database, since there were quite some reference to “Random Control Studies”, which are in its essence based on the idea that all persons are the same, which is a useless concept for mental health care: Obviously every mind is unique. So I am not sure if I would agree to the norms used by the Cochrane organization. So I am very skeptical to this initiative.
At 11 AM there was a coffee-break. By that time I had already had a bit of a discussion with a Finnish nurse, who claimed that electroshocks were a good treatment, and who rejected any criticism on this, bitterly saying: “It’s not like one flew over the cuckoo’s nest.”. But I know a whole lot of ECT-survivors, many from Scandinavia, and their stories are truly heart-breaking. All of them report memory-loss caused by electroshocks (memories are randomly deleted, as well as skills and abilities being deleted. It is really one of the most devastating experiences a person can go through, and this cannot be ignored or silenced). But with the Finnish nurse, there was no room for discussion. I sensed an inaccessible “health care workers know best- attitude”. It wasn’t a pleasant encounter, and I feared that the entire conference could be filled with old-fashioned health care workers.
Nevertheless, I still hoped to find some progressive minds in the audience. After all, the organizers had invited ENUSP for a keynote speech, which does show some willingness to have multiple views there. But I knew I was in the lion’s den. And I knew I couldn’t take any understanding for granted. So I decided that I should adapt my presentation (the next day) to their orientation, which meant to carefully explain the difference between hurt and help, and the difference between coercion and care. It is sad that it needs an explanation at all, but I knew what I had to do.
So my first impression of the conference was, like walking into a room and getting an ice-cold shower… And then I was a bit lonely, but I was happy to meet Timo from Finland, another active ENUSP-member. It was great to catch up with him. This gave me a safe space, as well as the contacts with persons from AA (Anonymous Alcoholics).
After the coffee-break, the workshop sessions started. I went to the session on Risk Assessment, which had 4 speakers. I wondered what would come. (and I was somewhat prepared for the worst..)
First Ian Needham (Switzerland) spoke about trainings of staff in aggression management. (I know these trainings, and I am not impressed by it). During the question time, I mentioned to him, that there are far more effective ways to reduce coercion (such as avoiding admissions), and that such a training is just a marginal step, and not innovative if you ask me.
Then Chris Wagstaff and his colleague (both from UK) spoke about a new way of risk assessment in the form of a “stay well plan”, which has a far more positive angle. In itself it sounded not bad at all. But in their examples I sensed the classical power imbalances when they referred to “persons who refuse to accept their diagnosis” and who are then forced to use medication. “It’s hard to keep the dialogue going, and to build trust with this group”…. The way of talking was very stigmatizing, and during the question time I flagged this, and I emphasized that I think it is only logical that building contact fails without listening to the other and putting them through unwanted treatments. (the defense was that it was about a forensic ward, so they had nothing to say about the forced context).
Next was Asta Halonen (Finland), who spoke about the practices at a Finnish forensic ward, where a cost-saving group scheme had been installed, which enabled persons with high support needs to join voluntary educational activities, aimed at recovery and rehabilitation. It was seen as a win-win situation: less staff needed, and users found it useful.
I personally was not impressed, to say the least. And I didn’t like the emphasis on cost-saving at all. It was really “inside the box” instead of outside the box. Group schemes have always been used for cost-savings. It is much more important to move away from that, and focus on the real needs instead of costs… It is needed to change the system for real, and to be really innovative.
But I didn’t raise any questions, since I also wanted to see if anyone else made any remarks on this. But nobody raised any questions or remarks. It was silent in the room. That was quite disappointing if you ask me….
The last speaker of the session on Risk assessment was Frank Reilly (Scotland), who spoke on his research among professional mental health care workers about the concept of coproduction and how to realize that. He found that coproductive attitudes link to the same relational pillars as the recovery model (such as hope and empowerment). To change attitudes of staff means to change staff criteria, which may mean to replace staff.
I was glad that he actually mentioned the social dimension and relational, interactive components of aggression and violence (so he was not insinuating it is an “illness”). He actually acknowledged that better relations increase safety. We exchanged cards afterwards.
After a delicious but lonely lunch, there was another keynote speech at 14.00.
Kristian Wahlbeck (Finland) spoke about new frontiers in mental health care, and what should be the focus or emphasis in the coming years. He highlighted the social determinants and risk factors for developing mental health problems, and emphasized that it is important to have impact on how the society is built. But he then moved to a more medical oriented approach, and shockingly he referred to “the burden of ill health” and showed European data on “the total costs of brain disorders (excluding dementia)” – showing sky-high costs - . He then presented a list of transitions. But he had already lost my attention, because the reference to “brain disorders” when talking about mental health is just not to be taken serious anymore. It is terribly outdated to use such words or references, so to me, this was clearly not an expert. (It actually made me sad to see this “fake knowledge” presented on stage – this is undermining the development of real quality!!)
During the question-time, I raised some critical questions, which turned into a public mini-discussion. First I asked how he could combine the social model with the medical model in his presentation. He said he didn’t necessarily agree to one of these perspectives, but these were existing data. - I then responded that the slide on brain-disorders was useless and misplaced, and I asked him why he had used that. He said he agreed that the terminology was outdated, but that these were the only data available. - I then asked him why he based his research on unacceptable data , and why he hadn’t started with good data from the very beginning. He then agreed that this was a good point, and that he could consider that…
Afterwards we talked a bit. He defended himself by saying how hard it was to change the existing paradigm, especially in the “European Brain Council” (which is indeed a very scary organization, http://www.braincouncil.eu/ ) . I then tried to convince him that nevertheless, we need to push for a really good change, and not take any less. I emphasized the value of networks, like ENUSP and MHE, to push for coordinated change at this EU level. We exchanged cards.
During the rest of the day, many participants expressed their appreciation for my critical questions to mr. Wahlbeck. That was nice.
Then, during the coffeee break, I went to the bus that was waiting in front of the hotel, to go on a visit to Bohnice Psychiatric Hospital. I knew this was the “showcase-hospital” (basically every country has one). The ward was freshly renovated in January 2016.
Bohnice Psychiatric Hospital is one of those typical, traditional pavilion-system psychiatric hospitals, located in the woods, outside the city. It was quite a trip to get there. It is a very big hospital, which also provides a number of medical specialisms. But most of the buildings were psychiatric wards, either for males, females, children, elderly, and they had the well-known variety of acute and long-stay wards, and some therapeutic areas. A church was prominently present in the middle of the green compounds. It looked quite monumental. Almost beautiful… (yet it wasn’t).
I was somewhat shocked by seeing the compounds. It’s style totally resembled a Dutch psychiatric institution where I had been in myself, some 20 years ago. The same traditional pavilions in a green site. Away from the community. Locked in, in a strange separate world… It made me really sad to see this. The international user-movement has shown me, that our struggle for our rights, is a global struggle. And in many countries, many regions, we face the same challenges in a range of variety. And it just hurt my eyes to see this traditional segregation-style institution.
I choose to join the group for visiting the Acute ward for males, and Timo did too. I tried to go in open minded. While we were waiting in the hallway, with the doctor of ward 26, it was silent, and the doctor asked if anyone had any questions in advance. I did. And I carefully asked whether there were still any caged beds in use in this ward, or in this hospital (caged beds, or net-beds, are beds covered with a netting so that the person inside cannot get out). The doctor seemed almost insulted by this question, and firmly stated that there were no caged beds in use at this ward nor in this hospital – And he added that he was pretty sure that these have been banned from Prague entirely, and maybe even from the entire country, since this has been a political issue. He seemed honest when he said this, so it seems that he may not even know. But we have checked in our networks with Czech users/survivors, and we got informed that the caged beds are not yet banned from Czech Republic. I didn’t argue with the doctor, since we were at the start of the visit… I did believe him when he said there were no caged beds in this ward (which was freshly renovated – and which was selected to be visited by this group of international conference participants). The doctor explained they did use straps or belts, and isolation rooms (or secured rooms). And obviously forced medication was not singled out in any way, “for treatment”…
We were led around in the building of the closed Acute ward for males: ward 26. All males had a small shared bedroom (2 persons) including sanitary provisions. There were nets hanging in the windows… The same nets that are used in the net-beds... It looked like these nets had been given a new, though rather similar purpose. So now we know where the nets went. They have been moved a few meters further… . (while they should disappear, and the walls too).
I am adding some pictures. They speak for themselves I suppose.
There was one room used for solitary confinement. A person was laying there, tied to the bed in solitary confinement, surveilled by a camera and through a physical window in the nursing office. The man was fully calm and appeared asleep (or numbed out?)..anyway, no threatening imminent danger or whatsoever. We were told that the seclusion room was mostly used for persons who were “dangerous to themselves”, and that “persons can be very unpredictable, and it takes time for the medication to work“… So yes, he was numbed out..
And o my god, in a way, I was looking at myself… I know how it feels to be tied up, drugged and abandoned.. Powerless and degraded, hopeless, ..extremely lost and lonely.. and apparently nobody understands that…
And there I stood, in the nursing office between so many nurses (approximately 20 other conference participants). They didn’t seem to see what I saw. To them it was a nursing office… like in their daily practices.. “this is how things are done”.. “it looks clean and organized” … We were allowed to take a picture of it, since the person wasn’t visible. Then the doctor closed the blinds… He didn’t seem to feel shame for this practice, and neither seemed the other nurses…
I felt lonely, and I was happy that Timo was with me. On the one hand I wanted to start a discussion with the doctor about this practice, but on the other hand, I was getting a true view behind the scenes, and obviously this said a lot about the place and the conference participants. It was all fitting the traditional European psychiatric institution-model. Dehumanized, not equal.
I continued observing it all.
We saw some more rooms, the kitchen and recreational/dining area, the occupational/therapeutic facilities on the basement-floor, with access to the confined garden, and upstairs: the administration offices, and a chill-out room for staff, with a number of colourful fatboy-cushions to lay on (..I can only hope this gives them a sudden rush of understanding what “caring for wellbeing” actually is about… I wish them that insight as much as possible).
There was no real chance to talk to the persons detained in this ward, although we saw a couple of them in the small “discouraging” smoking room (again very traditional).
I guess the visit lasted about an hour. I was numbed out by what I had seen. The was visit had been full of absolute stereotypes. I had seen a typical, traditional ward, where life is mainly about performing a group schedule of eating and sleeping and random activities, and some weekly conversations or whatsoever. I know what it is like to live in such a closed ward, where you have to “earn” your freedoms by “showing good behavior”. Real mental health care is something different than conforming to a set of rules. But in this institution, traditional as it was, the focus really seemed to be on conformity (brought about by the medical model and the old-paradigm of exclusion and segregation), instead of supporting wellbeing in diversity and freedom.
I know that steps are being taken to develop more community based mental health care services in Czech Republic (such as Magdalena Community), but to be really successful, these services should break away from the traditional attitudes as we see in the traditional psychiatric hospitals.
Seeing the psychiatric hospital reminded me, of how wide-spread this traditional attitude still is, and how much power imbalance there still is. I know this was the “showcase-hospital”. It is probably the best in Czech Republic….
I noticed that I really missed having a real dialogue with the doctor and staff. Normally when I visit an institution in any country, I offer a free consult, and I would share my views and offer new ideas. Then I have the feeling that I did something. But now, just witnessing the situation, - and seeing the potential for improvements- and then leaving it just like that… it was hard for me. I don’t want to turn my back to persons in such a situation… I want to actually make things better.. It felt like a wasted opportunity, and that made me feel even more sad.
I sat in the bus with my head full of thoughts, during the 40 minute ride.
Around 17.30 we arrived back at the NH hotel Prague City.
Timo and I waited for Debra, and then around 18.00 we had a nice drink together, catching up together and talking about developments and dynamics in the international user-movement. Then Debra and I went to the venue of the ECMH Banquet, which was a dinner party at a very luxurious restaurant: Mark Luxury Hotel. Debra and I had a welcome drink around 20.30, and after some nice chatting together, Debra left , and I joined a table for dinner.
It was a really delicious dinner. And I sat with some really nice people, and we had great fun and good conversations. I really enjoyed the evening a lot. Close to the end of the dinner, I met Sherry Craig and Craig Lewis, who are promoting the book: Better Days – A Mental Health Recovery Workbook , see http://www.betterdaysrecovery.com/ . It’s really impressive what they are doing. I was happy to meet them, and to feel like having 2 new great friends on the globe. We stayed together for the rest of the evening. They will be travelling for the coming time, so who knows, we may meet again somewhere (and at least we have facebook :) .
It was around 1.30 AM when I arrived back at the hotel, and then I decided to do some work, such as checking my email and finalizing my powerpoint presentation for my upcoming keynote speech. Then, when I went out for a cigarette around 2.30, I still found some (quite drunk) participants on the terrace, and had a good laugh with them. Around 3-ish we all went indoors. Time to sleep. It had been a very intense day.
On Friday 16 September 2016, I enjoyed a nice breakfast, and then went to pack my bags in my room. After checking out, and another cable-car trip, I arrived at the conference venue, downstairs in the hotel.
The keynote speech by B. from Amsterdam, on European AA (Anonymous Alcoholics) had already started. She spoke about how AA had helped her to turn her life around, and it still helps her. It is nice to hear about inspiring practices, and about real life, and real feelings – which is what it is all about - . It went deeper than just another theoretical story. It was a good opening of the second day of the conference.
Then there was another keynote speech by Ladislav Csemy (Czech Republic), which was about alcohol consumption in the Czech Republic, which is relatively high compared to other European countries. I just listened and saw many slides with numbers, but I had no particular connection with the topic, and I fully trusted the AA-delegation to be following this closely. So that was a relaxed start of the day for me.
Then, after the morning coffee break, there was another round of workshop-sessions. I went to the session on Human Rights, although it was clear from the program that this wasn’t about the UN Convention on the Rights of Persons with Disabilities (UN CRPD), but about mental health in areas of (post) war and conflict, and also a session on sexuality had been added. Again I mainly listened, and I found no particular disagreements or controversies in these presentations.
After 2 sessions, I decided to leave the room, and take some extra time to prepare my presentation a bit more, which was scheduled directly after lunch. So I sat in the conference hallway, enjoying the quietness, and making some final notes. Then I felt I was fully ready.
I had a nice lunch, less lonely than the day before.
At 14.00, the participants (nearly 400) gathered in the room for my keynote speech. It was the last speech of the conference. So I had the final say ;)
I emphasized that implementing the UN Convention on the Rights of Persons with Disabilities is posing a real challenge to mental health care in all European countries. Big changes are needed, and I asked the participants, to take this challenge, to ban coercion, and to realize real mental health care in line with the UN CRPD.
You can actually see a big part of my keynote speech on Youtube, by following this link:
The powerpoint-presentation can be downloaded here: http://tekeertegendeisoleer.files.wordpress.com/2016/09/the-importance-of-a-paradigm-shift-in-european-mental-health-care.ppt
I am happy to say that my presentation went very well, and my message was received well. During the question-time, a psychologist shared her personal lived experience of receiving mental health care, painfully pointing at stigma and attitudes, and she suggested educating nurses in the role of emotions. I then suggested to take this even further, and to educate everyone in the community, starting with school children, on having emotions and dealing with these. Feeling are real, and should be regarded as scienitifically valuable, and as indicators for practical guidance. Applause followed, and many people seemed to like this view.
Afterwards, the chair Lauri Kuosmanen spoke, and on behalf of the audience, the scientific committee and ECMH as a whole, he said that they would take the challenge to implement the UN CRPD. This was a great moment of course. I felt victorious.
The chair, Lauri Kuosmanen formally closed the conference, and then we spoke a bit afterwards. He told me that he was moved to tears by my presentation. He had actually planned to reflect on my speech, and bringing in his experience with a study on human rights, but he said he had been too emotional, and therefore had decided to skip to the closing ceremony. He expressed a lot of thanks for my presentation, and also quite a number of other participants came to give me compliments on my speech. That was really super, especially because it had been a challenging audience for me, and also, these are “the people with the keys of the institutional doors”, so even if I succeed to only reach one of them, it could have a real impact in someone’s life directly, and that makes it so much worth it.
So I was very happy when I got so many compliments by many participants, and also the scientific committee members. It had been a real success. So since then I had a big smile on my face.
At 16.00, the conference organizers had arranged a very luxurious taxi, especially for me, to take me back to the airport (they have taken very good care of my transport since the first day, ensuring nothing else went wrong for me). I felt like a punky rockstar after a gig.
And even the terrible cold that has been bothering me for a week, doesn’t really matter. I am still happy and proud.
And now I can only hope that my speech is not just forgotten or stored as a memory, but that it actually inspires people to make real changes in mental health care.
PS. You can find the full Abstract book of ECMH 2016 here: http://www.ecmh.eu/wp-content/uploads/2014/12/ECMH-Prague-Abstract-Book.pdf
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