On Wednesday 29 July 2015, I went to Youwa psychiatric hospital in Tokyo. At 1300 in the afternoon we : Ryugan (Mr. Akihiko Sekuguchi), Miwa Yoshiko, 2 interpreters and me) had an appointment with the president, a doctor and a nurse of the Youwa psychiatric hospital.
First we had a talk and they explained the structure of the hospital. There is an old and a new building. In the new building there are 2 acute wards with 2x 48 beds for patients. In the old building there are 2 chronic wards with 66 beds and 54 beds. Also there are 2 wards for persons with dementia, but we were not allowed to see that… In total there are 328 beds, and 228 patients are hospitalized.
The treatment consists in the first place of medication and occupational therapies in the form of group programmes. At acute ward there are in total 22 social workers, 24 nurses, and 5 doctors (on 96 patients in total). At the chronic ward this is 1 social worker, 20 nurses and 3 doctor (on 100-120 patients), so that is significantly less. There are 5 locked/closed wards, and 1 open ward, where people are free to go outside between 8 AM and 8 PM. About 60% of the patients is involuntary. The doctors were keen to explain that the average number of inpatients staying over 1 year is 2,5 % for this hospital, while the average is 12% for all of Japan, and 10 % for Tokyo.
After the talk, we went to see the Acute ward, which has several single rooms, and some shared rooms. We saw quite some people in a pyjama, which they had rented from the hospital for 180 yen a day. A strange situation. Why a pyjama, and why rent?
I was also notable that at this location, the bedrooms could be locked (and the patients do not have the key), and it does happen that all furniture is taken out and the person is locked in the empty room (as a “stripped room”). Lock-in at night can be part of the person’s “treatment”. There were 6 of these so-called “semi-isolation rooms” that were especially soundproof for such detention. The nurses said that they can “allow” the screaming and banging, and they monitor the situation by a camera, and when indicated they will see what the request of the patient is when screaming. But because it doesn’t sound so loud, they didn’t have to intervene. It was terrible to hear this ignorance. A person doesn’t scream and bang on the door for no reason, and taking no action certainly cannot be called care. It is a classic example of not caring.
Besides medication as the main intervention in general and in crisis-situations, and besides the lockable bedrooms, also restraint belts (4-point restraint) and IV drips, and seclusion cells, are used in situations of excitement. At this location they use the restraint belts in the seclusion cell (the storage bag of the restraints belts had butterflies on it to indicate the order, and it was very disturbing to see sweet butterflies linked to these horrible belts, very misleading). Then they showed us a special machine for when a person is restrained in belts for a longer time, to prevent the blood clogging (the device inflates and deflates to put some pressure on the legs), they also had an oxygen system, for persons who need oxygen when restrained (which means in practice that persons are so badly drugged that they can hardly breathe on their own). Diapers and bedpans were also available. The nurse also explained that, after 10 days of restraints, they were careful in assisting the person with walking again… This was so utterly disgusting. They were fully equipped to practice long-term restraints. And while they were supposed to be MENTAL health care workers, they were only focussed on physical aspects and physical measures. There was not a single reference to the inner life of persons. While in fact, mental health care workers should be the first to recognise neglect and abuse. It was terrible.
And they actually thought they were doing a good thing here. When I asked directly whether they thought that forced interventions and restraints were a good care practice, the nurse said: “Yes it’s good care”. I replied that locking a person up, or tying him/her up on a bed cannot be called good care, but these are very degrading outdated practices, classifying as abuse and neglect, while real professional care is something completely different. I asked her if she had ever studied alternatives without force, and she replied: “We don’t use restraints always on all patients, but only if necessary and the person cannot be calmed down in another way”. I asked whether all patients were on medication, and the nurse replied “not if it’s not needed, so a few are not on medication”. They mentioned that they didn’t practice electroshocks (ECT) and that staff tries to calm the person down. I asked whether there were also other persons (other than staff) involved for de-escalation, because when there is no trust-relation it is hard to calm someone down, but she said “no, most patients get upset when they see their family” - and I replied that that is indeed quite common, especially when family has a role in requesting or allowing the forced interventions which disturbs the relation ? but what about friends or peers or anyone the person trusts? And what about doing something nice to calm the person down? The nurse said: “patients do not want to see friends during their ‘illness’ only after they are recovered”. (while in fact this shows that stigma in the community should be dealt with, but this awareness appeared to be lacking). I tried to explain that it would be very human to ask a person in need “what can I do for you, who can I call for you, what do you need”, but the nurse replied “the treatment team does not involve third parties in the treatment, because it is not their responsibility”. It was clear to me that they do not invest in support of social relations or wellbeing. They invest in exclusion.
During my visit, there was no constructive discussion. They were very defensive, and did not want to discuss any alternatives, since they were of opinion that their practices were good, and even “better” than the average in Japan. That was rather sad, because I wanted to share my knowledge to help them, but they were not open for that. It started to feel like this was a rather useless visit to me.
Then we went to see a Chronic ward, which was in the old building. At this ward, 45 of 66 beds were occupied. They didn’t have any single rooms, only shared rooms. The building was really very old, and not meeting the current standards. They wanted to rebuild it as soon as possible. The chronic ward had this terrible suffocating smell that is so typical for closed wards, where people are detained and no windows are opened. It was surely unhealthy. We were again allowed to see the seclusion cells, and the nurse of the chronic ward asked me if I minded to see a naked woman in there… (of course I was shocked by this question). I told the nurse that that woman should decide on this. Then we were allowed in, and she was laying in 1 of the 3 cells under a blanket. The woman was very calm and said she was surprised to see us. She had already been there for 3 days… These were very, very old cells. When we were outside of this outdated cell block, I asked the nurse why this woman was secluded, since she was so calm. The nurse said that the woman was very weak after a recent hospitalization, and she was now secluded “to protect her from the other patients, who could do things to her”. I felt shocked and upset when I heard this. The woman was not there due to her own behaviour, but due to other people’s problems…. This is totally disgusting. And I said in her face that this is called neglect. The nurse said “well, we have different opinions on that”. And then she appeared to feel some remorse, and added something about staff shortage and that they tried their best to fill the vacancies etcetera etcetera. So in a very minimal way, she did acknowledge that this wasn’t good. But still rather defensive, and not really acknowledging that the entire attitude needs to be changed.
After this very shocking situation, we were allowed to speak to some selected patients at the chronic ward. They appeared adapted to the practices, but also still had dreams. At some point the smelly air of detained people became too thick for me, and also the horrors that I had seen, and I really needed to go outside. And while we all left, I was fighting my tears, but I didn’t manage, and then I cried about the horrors and the pain. The doctor-president (Dr. Akihito Kumagai) saw that I was really upset, and his attitude suddenly changed. He came to me and said: “Yes we know that there are some shameful practices in here.” Finally the fully defensive attitude was gone. Finally some acknowledgement from this key-holding person, that it is NOT okay to treat people like this. He gave me his email address, and I will send him information on alternatives to prevent forced treatments.
It was a heavy visit. But it was positive that finally there was a crack in the defensive attitude. They were not really sensitive for words and discussion, but eventually, my emotional response did get through. The doctor cared about this feeling, which is quite elementary for a care-worker, so that was quite a positive thing after all. It seemed that ‘the eyes of a foreigner’ had impact, and at the end, the doctor was able to reflect on their own practices. So I think they became aware that their practices are not meeting the international standards. That awareness is a very important first step.
You may also want to read my report of my visit to another psychiatric hospital in Tokyo: Tamaaoba psychiatric hospital: http://punkertje.waarbenjij.nu/reisverslag/4853176/tamaaoba-psychiatric-hospital-visit which will soon be available in Japanese at: http://www.arsvi.com/w/sj05.htm
It had been a very intense experience on my last day in Japan.
Afterwards I had a great evening with my Japanese friends of the user-survivor organization the Japan National Group of Mentally Disabled People (http://www.jngmdp.org) and then my stay in Japan came to its end. After a long journey, I landed safe and sound in the Netherlands again. It had been a wonderful and intense time, and I am grateful that I was able to contribute to the advocacy of the user-survivor organization JNGMDP in Japan.
The concepts of the current psychiatric system need to be challenged and changed, and real mental health care with a social basis needs to be developed. Change is possible and needed, as is also illustrated by the United Nations Convention on the Rights of Disabilities (UN CRPD), which is explicitly including this domain, as can be seen in the CRPD General Comment on article 12, http://www.ohchr.org/EN/HRBodies/CRPD/Pages/GC.aspx and the CRPD Committee’s statement on article 14, http://www.ohchr.org/EN/NewsEvents/Pages/DisplayNews.aspx?NewsID=15183&LangID=E
The first step is awareness that psychiatry needs to change. The second step is making that change. I hope that the Youwa psychiatric hospital (and all other psychiatric institutions) will soon arrive at step 2. The human lives and the feelings of persons with psychosocial problems matter, and mental health care should care for feelings and the experience of wellbeing of the person, and like any form of care, it should make the patient feel better. A lot of good practices and tools have been developed already in various places in the world, such as the social concept of Recovery (Deegan and others), WRAP (Wellness Recovery Action Plan-toolkit) and peer-support initiatives. The expertise of persons with lived experience is vital for developing good practices in mental health care. In Japan, JNGMDP should be meaningfully involved in reshaping mental health care in Japan. In my experience, Japan is a country with high standards in many aspects of life, which gives me the hope that they will be able to apply high morals and high social standards (hospitality, respect, service and support) to mental health care services also. So I do see a lot of potential when the institutions decide that they are willing to change. I am looking forward to see that happen, and I am willing to support that process.
So far my experiences in Japan.