Debriefing of the institution visit and going home
17 Maart 2013 | Moldavië, Chisinau
Then we continued to debrief what we had seen during the visit, and all participants told their main findings on daily life in the psychiatric hospital in Chisinau, which we discussed together in the big group. This session was again very heavy, because of the many details on the very degrading circumstances in the institution.
The groups had been visiting different wards (female, male and forensic), so the findings were grouped as well. I have been taking notes, and here is a summary of what was discussed:
On the female ward on the third floor there were about 60 persons, there was no fresh air, the windows were closed. One person said: “It’s a terrible smell. It reminds me of when my grandmother’s pig died”. The persons get to shower only 1 time per week, in a group shower with 3 showerheads and no separation, which means no privacy at all. Also toilets were grouped with 3 pots in one bathroom and non-separated. There was no lock to be used from the inside of the bathroom on the door to the corridor, which means everyone could walk in anytime. The smell of urine and faeces from the toilet was hanging all over in the bathroom area, including in the shower room and the last part of the corridor. Shampoo should be provided by family, but generally gets taken away for “safety reasons”. It seemed unlikely that persons got access to the shower key whenever they wanted.
Person were not much communicating to each other. Patients said: “If you make noise, you get medicin”. When we were led around, the nurse said: “Back in the corridor there is a room with aggressive patients, you should better not go there, they are aggressive to us, so they probably are aggressive to you too, you should better not go there”. This indicates that there is no free communication allowed in there.
We saw most persons were sleeping. Bed-linen was only changed once in 2 weeks.
There were said to be 3 meals a day, and no extra food (only if family provides something). But persons are kept asleep by medication (knock-out), and when they are sleeping they get no food, because they aren’t in the kantine. This means that people who are unable to get up, may be hungry in their beds all night without food.
At set times there is tea provided, which is already prepared with sugar. Each person gets 1 cup (no spoons), and there is no extra tea or other drinks available. Tap-water, which is unsafe for drinking was cut off for “safety reasons” (and electricity was cut off for “safety” too)
There were no activities at all. Some persons had personal belongings, such as a Bible. There was no pen or paper. What people do all day is sleep/lay in bed and eat. If allowed, in between that they might walk a few metres in the room, and if allowed-on the corridor or to the family room when a visitor comes.
There was a single TV hanging in the corridor, which was turned off during the day (only to be used in the evening from 6pm). In the corridor there were only 3 small benches to sit for about 2-3 people (not in use by any of the residents). At the ward there were no chairs or tables, only in the family meeting room (in front of the ward) and the kantine, but these weren’t freely accessible.
It was rather a dark place, not much light, with empty walls, no art and no clock. Only in some of the rooms we saw plants and flowers. There were mainly only beds and bedside tables, generally about 8 or 10 in a room of about 8 by 8 metres (about 2 square metres per bed), and sometimes additional beds were placed in the rooms, up to a total of 12 beds, and then it was hard to reach the beds through the narrow walking spaces.
The male ward on the fourth floor was quite similar to the structure and regime of the female ward on the third floor, but there were a little more attributes present. One resident showed a game of chess, and there were cards to play and crosswords (all personal belongings). The staff showed us a locked library at the end of the corridor.
Many persons received some extra food from their family, which they often shared with other residents, so they could have something nice more often, instead of only after a visit from their own relative. There was a fully barred balcony, where some residents were smoking, and they had free access to go in and out to the balcony. A resident had shown his mobile phone, which was working. The residents spent their day mostly by sitting in the room on the bed, and talking to each other (residents). There were no chairs or tables in the ward.
It seemed that at this ward many of the residents had been institutionalized before, and had had previous contacts with staff, which made the atmosphere a little different than the female ward, in terms of ‘clearer roles and smoother running’ at the ward.
One resident told that he cleaned the outside compounds, in return for an extra piece of bread. The vast majority of persons were not satisfied with the food. They said it was not enough, there was no meat, and they eat only porridge, which is in the morning a very weird “blue porridge”.
Also again the toilets were very dirty and released a penetrating smell of urine and faeces up to the corridor and the shower room, which also had 3 non-separated shower heads for group showering. The toilets were also with 3 and non-separated. A resident said: “We want decent toilets with doors, we feel like animals”.
The forensic ward had been even more shocking for the group that went there. Person are detained there for years, instead of being placed in prison. Every 6 months a judge evaluates their stay, but even when the doctor says the person is well enough to go home, the judge may decide otherwise, and the resident isn’t seen in court at all. Many persons are there for many months up to several years.
The visiting group had only been inside the forensic ward for a short time, because the staff had made the group leave after about 15 minutes. I myself wasn’t in that group (I was with the group that visited one male and one female ward of General Psychiatry). The request from the visiting group to visit the female forensic ward on the next floor was declined, because this was “not allowed, they were not ready for a visit”.
The Forensic Psychiatry was located at the administration building. There were several floors (male and female separated). The male forensic ward (ward 20) contained about 100 persons, who had to share one bath-room. The toilet-room and shower-room were both rather small rooms (4 by 4 metres) with non-separated group-facilities without doors (3 showers/ 3 toilets) , which released a penetrating smell of urine and faeces into quite some metres around the area, right into the kitchen in front, and onto the corridor. There was no window in the bathroom, and it was dirty (not-cleaned). Persons smoke inside the bathroom. The open doors are experienced as very degrading by the persons who have to live there.
In the first room were 22 persons of which 20 were passively lying in bed with the bed-linen over their heads. 3 staff and 1 guard was present during the visit. Some beds had no full bed-linen, and the staff explained this was because “it would just get dirty”.
In the second room persons were standing straight like in the army, and also here was staff present. There were flowers in this room, and the residents told that they cleaned the room themselves. At lunch-time they lined up to wash hands, supervised by staff.
The windows at the ward were closed, and when asked about the frequency of ventilation, the staff opened the window and mentioned this was done “regularly/ every morning”. However, inside at the ward there was no fresh air.
If persons “behave” they can be allowed to do various forms of supervised work, which allows them to go outside and get some fresh air. Besides this, the residents never go out, so some of them haven’t been able to go outside into fresh air for many months (maybe years).
There is no extra food provided, and food brought by family cannot be stored in the fridge. According to a resident he could only store food in the fridge at the male ward at the fourth floor. All residents who were asked about food, complained of the food provided, which was said to have no taste, no smell and one resident compared it to “pig-food”. It was said that one boy, age 15, didn’t eat anything provided, only food that was brought by family. The kantine was 8 by 8 metres and had 2 tables and chairs. Eating was done in shifts.
There were no chairs on the ward, and no power sockets, no radio, no newspaper. Persons appeared heavily medicated and seemed to live 'from food to food'. The ward was not well-maintained or properly renovated, walls, doors, windows and ceilings were damaged and dirty and not repaired.
The phone which residents 'could use' to call family, was located in a closed, locked room which also contained a board with patient names.
During the visit staff was smiling and very nice, but when the group was leaving they overheard “if you don’t shut up you will be beaten”. Several patients told that they were very scared of punishment, and one of them explained: “The first time you violate the regime, you are locked without food for 1 day. The second time you will be locked without food for 2 days, the third time you will be beaten, and the fourth time you get medication”. This couldn’t be verified in the short visit (none of the group had seen any seclusion room or whatsoever during the limited visit).
It seemed that during the interview, the residents of the forensic ward, who were speaking with the group, were taken one by one to come with the nurses, to get an injection of Aminazine (strong medicin). One resident said it was the first time he got this, and within 10 minutes he said he was sleepy and needed to go to bed. It was suspicious that these persons got the injections during the interviews with the monitoring group, however, again it wasn’t possible to verify if this was a normal time and normal procedure for getting medicin, or if it was a specific reaction to the monitoring visit. There was no time to check the treatment-charts of whatsoever, because the group was no longer welcome by the staff.
After getting all this information from the group of participants, we discussed which findings were backed with evidence, and which were more subjective or based on assumptions. We also discussed how to question everything during a visit, and how to write the findings in a report.
For example: an interview with staff or guards present is not very reliable, as we all know that persons tend to “agree” to appear “behaved” and possibly get a reward for being “good” (such as an extra piece of bread), and on the other hand, they may face consequences and be punished for disagreeing and saying negative things. Some residents explicitly asked the participants to keep everything confidential and anonymous, because they feared to get problems, such as being beaten and getting tied up on the bed (with bed-linen).
Staff said it wasn’t allowed to talk to residents in private at the forensic ward, but there is no law which prohibits conversations with the residents, so it’s basically unlawful when they prohibit private communication. So you have the right to talk to persons in private, and staff should allow that. This sometimes may need some active pushing during visits.
Time was already flying, and after discussing the findings, we had only one hour left to wrap up our findings of the visit and the entire training, because the trainers: Kay, Dodo, Oliver and me had to go to the airport to catch our flights. It was a real pity we had to speed it all up. (During the planning of this training months ago, I had already raised that this half-day session was too short to evaluate the visit and the process, but there was no funding to stay longer, so we had to do it like this. I really regret that we had to cut it short at the end).
Everyone had been asked to think about recommendations for a next visit, and in about 15 minutes we shared these learning-points within the group.
The most heard recommendations were: More preparation on questions and places to go (not chaotic last-minute decisions on which ward to visit), More clarity and better planning (who goes where in what role), preparing yourself better to avoid that emotions cause a loss of focus (having a detailed plan also means guidance for yourself), working as a team (alone is more emotional, and together you can check and compare the evidence given by staff and residents better), more research and checking evidence (including checking medical documents), and more practice to get used to interviewing people and skills such as steering conversations. The courage to open doors, and to ask for more information. And also more cooperation with the NPM/Ombudsman-office (having authority and additional expertise with us), having enough time at a visit, raising public awareness on the findings, and mediation of feedback to the institution were mentioned as recommendations for future monitoring activities.
But apart from the learning-points, we all agreed that the first monitoring visit had been successful, and everyone agreed to have learned a lot during this week of training. The first steps in setting up service user involvement in monitoring have been taken, and of course there is still a lot to learn (you always keep on learning in monitoring skills). The training was a first exercise, but it surely was a useful step forwards towards the inclusion of service users in monitoring. The independent Ombuds-woman on psychiatry (Doina) was also present today, and had been taking notes all morning. She surely showed dedication, and it was empowering for the group to see they are not fully on their own.
After exchanging views on the visit we did a small writing exercise in small groups, to practice skills in how to write a credible and powerful report, and how findings can be backed by evidence and testimonies. It was such a pity that we couldn’t review each bit of writing due to the limited time we had left. But generally everyone understood the idea of using evidence and testimonies, and the difference between opinions/assumptions and findings.
We had to speed up the process, because we only had 10 minutes left for the closing of the training and we needed to go to the airport. We used this time for participants to speak out their opinion of the training. We got great responses, such as: “grateful, empowered, supported for the first time in my life, hope for change, good, happy, encouraged, informed and helped, experienced, learned a lot, more powerful and pushy, superperfect and inspired”.
It was great to hear this positive feedback, and it warmed my heart that I had been part of this inspiring event, and that we had been able to support these persons, who are pioneers in Moldova, pushing for a change in the lives of persons with disabilities, in a country full of barriers for them. They are amazingly courageous and inspiring.
The atmosphere in the room was once again really great. The group had really bonded to each other as a joint team, which will surely get continuation and follow-up in the future. The group of persons that didn’t visit the institution and received further interview training will also be included in these future activities.
It feels good to see how this training has led to empowerment. It is very satisfying to empower persons with disabilities, so even despite the absence of a possibility to practice collaboration with the official monitoring mechanisms, such as NPM and Ombudsman-office, it still feels like we accomplished the main thing of our mission: which is in my opinion to support service users and persons with disabilities, and to empower them in establishing their rights.
Then it was time to say goodbye to everyone, and to shake hands and give out contact-cards. And then we walked out. It’s always hard to leave.
We grabbed a quick lunch and said goodbye to the organizers, and then we took a taxi to the airport.
It had been a very intense week. Every day was intense for me. The sharing of testimonies, the sad news about my friend who passed away, the field visit to the hospital which was heart breaking, and also this last day was again a lot of input, and I hadn’t had so much sleep, because I also wrote my reports late in the evening. So it had been pretty exhausting here for me.
The trip back home was quite intense as well. The flight from Chisinau to Vienna was delayed for over half an hour, and therefore I had missed my connection from Vienna to Amsterdam. At the desk-service they said the next flight to Amsterdam was fully booked, but I would be on the waiting-list. If not flying home, I would be offered a night at a hotel in Vienna. (But I don’t really like to be in Vienna alone, so I hoped I could go home). I was lucky, because after everyone had boarded the plane, I was invited to come along, and I flew to Amsterdam, where I arrived around 11pm.
Then had to take the trains to Eindhoven. I was lucky to be able to catch the last train, with some great company of party people, with whom I had great fun during several hours. They even offered me a ticket to join them to the house-party Dreamersland in Eindhoven, but after travelling for almost 12 hours and such intense experiences, I was really too tired to do so. But it was great fun in the train, and it had kept me awake and laughing until I reached Eindhoven.
At 3 in the night I finally reached my home in the Netherlands, and I went to bed right away. After a long sleep and visiting friends on Saturday, I am now finally finishing this report and digesting the intense experiences of last week.
It was a week I will never forget.
And I’m still reflecting on my experiences. Of course I’m still thinking about the people that we visited there, who were living in these horrible circumstances. We left... And personally I feel that just a "monitoring visit" is very unsatisfying. In my heart I am a mediator, and I want to talk about alternatives, but on this visit we couldn’t due to a lack of time. So we only noticed things were wrong and then we left... I don't like that. I would have loved to stay a bit longer and to be able to talk to the institution on what they could change. I want to build bridges and share ideas. I felt like I missed an opportunity for that.
But we did empower the group of persons with disabilities, and they will surely keep on raising their voices for the cause, and we are still in contact, so I think we still did something positive. But it’s hard to leave. Knowing that there is so much to do for change. I would like to support a speedy change. It’s so much needed. We all wish it could change in 1 day….
Personally I’m glad that I also spoke to one of the organizers about my alternative model (Family Group Conferencing to avoid crisis situations in mental health) and we will have a Skype chat about it. I mentioned it can also be used for De-institutionalization (for example FGC is used with children in Bulgaria). He was very enthusiast, and so I do have a follow up in exchanging information, and this makes me feel better, because I don’t want to leave the place behind just like that.. The least I can do is share my knowledge on alternatives. Some information may be useful or helpful. So I’m glad I have this follow up contact.
And I will take this personal learning-point into account for any next visit. I don’t like to walk away without trying to make real change by raising awareness on good practices with a social approach, so next time I would like to have time to give feedback to the institution as well, even when this may be unconventional in traditional ‘neutral’ monitoring visits. It’s how I would like to do it. I think it’s more fair and more effective to mediate, than to only point fingers and leave. Even small improvements can make a big difference in a person’s life there. It matters, and I feel bad about wasting this opportunity to raise ideas, but we had very limited time, and we focussed on empowering the monitoring-students, which is also a good thing. It was just too short to do it all.
Anyway, the entire experience of last week brings a lot to digest mentally. I learned a lot, and I’m still learning while I’m sorting things out. I’m very grateful that I was invited to support the participants in empowering their voice, and I’m grateful that I can travel the world (which is so opposite to living in seclusion). Advocating for freedom is a beautiful job, but also very intense to witness the horrific circumstances that people have to live in, and facing your limitations to free them right away. It's not easy...
It was a very intense, special, inspiring and exhausting week.
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