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Psycho-neurological institution in Ukraine are absolute grief and absolute evil

August 3, 2017, 19:00 203 Author: РАКУРС A group of researchers visited four psycho-neurological institutions in Eastern and Western Ukraine from 4 to 10 December 2016. We visited psycho-neurological institutions without warning.

A group of researchers visited four psycho-neurological institutions in Eastern and Western Ukraine from 4 to 10 December 2016. Institutions were chosen to obtain an adequate understanding of the current situation in this area. Visited psycho-neurological institutions without warning. What they saw deeply impressed the representatives of the monitoring group. We bring to the attention of the readers the conclusions, impressions and recommendations of the members of the group.

According to one of the psychiatrists, he is not going to reveal what means he resorts to to return clients to a “normal” state.

An adequate indicator of development is not the economic power of an individual, but the extent to which a person can use his capabilities in the system.

Amartya Sen

The researchers visited four psycho-neurological institutions: two in the eastern part of the country (in the Donetsky region) and two in the western part (in the Khmelnitsky and Zhytomyr regions). The main task of such institutions is to provide adequate living conditions for citizens with mental disorders in need of outside care and assistance, and to promote their integration into society. Four psycho-neurological institutions for inpatient stay of persons with mental disorders and intellectual insufficiency, where a significant number of people who are in them are limited in capacity, cut off from the outside world for an indefinite period and live a closed regulated life. 24 hours a day, 7 days a week, they are in the same closed space, fenced off from the outside world by physical and psychological barriers. A person must put up with the loss of control over his life. This so-called acquired helplessness is intensified by the medical solution of social, moral and personal problems of clients. The needs of a person in a psycho-neurological institution are viewed through the prism of outdated Soviet psychiatry.

Thus, a person is deprived of individuality. The client is regarded by the staff as a "broken mechanism" and is not perceived as an individual. As one experienced psychiatrist put it, “do not believe the stories of the wards, they are inferior and do nothing but seek attention.”

Clients of psycho-neurological institutions receive a stigma in the form of a diagnosis. As a result, a person living in such conditions, in the end, is forced to come to terms with this and begins (as a manifestation of self-stigmatization) to behave like a sick person.

The problems from which a person suffers are not associated with the social context. Phenomena such as sadness, loneliness, and a sense of the meaninglessness of existence are associated with his diagnosis, and not with the result of living in an alienated atmosphere of total institutions. The individual approach to the needs of the person is being replaced by a dehumanized one-stop care, while it is known that what seems best for the average client is not optimal for each particular person.

Care as a concept, however, concerns only the ordinary needs of life: personal hygiene, food, cleaning, medicines. No meaningful activity or any form of psychological support and counseling is offered. Therefore, clients are forced to predominantly spend an endless series of “meaningless days” in a control mode that destroys any manifestations of independence and individuality.

Employees, who often agree to sacrifice content for the sake of the management of the institution and lose the intuitive ability to recognize in another the same person as themselves, it is difficult to abandon the practice of dominating the drug model of help.

As the monitors note, the staff in nursing homes often have a kind heart, but at the same time they believe that well-being and health are the absence of diseases or physical disabilities, and not the ability to manage one's life and learn to live, overcoming physical, emotional and social difficulties.

The needs of the clients of psycho-neurological institutions who have or do not have mental disorders are the same as the needs of employees or people living in the society. The way in which their basic needs are met in closed institutions reveals the difference between the disadvantaged and neglected people in residential care homes and ordinary citizens. Correcting this injustice should be a priority. In psycho-neurological institutions, there are several ways (such as food, housing) to meet the basic human needs of psycho-neurological institution clients.

In addition, the monitors repeatedly met people who ended up in the system of psycho-neurological institutions solely because their relatives wanted to get rid of them. This happens for various reasons: most often for economic reasons, for example, for the sake of receiving (part of) a pension, an apartment or other real estate.

From conversations with patients

Woman, 60 years old: despite being in a psycho-neurological institution with a diagnosis of schizophrenia and hallucinations, she appeared to the team of interviewers as a coherent, well-organized person, with no signs of psychosis. She was sad, she did not sleep well, as a result, she was prescribed medication. Her greatest wish is to get well. During the day, she cleans and looks after the local church. She was placed in a psycho-neurological institution because her husband left to another. She spoke bitterly about her guardians. She accused them of taking her apartment.

Woman, age unknown: she has been in the psycho-neurological institution for 14 years. I came here after a stroke: first to the hospital, then to the psycho-neurological institution. Now she has almost recovered, moves with a walker. Has a daughter, to whom she went for 3-4 months. However, because something is wrong with some documents, she cannot leave thepsycho-neurological institution, despite the fact that she wants to go to her daughter and her daughter agrees to take her.

Woman, 40 years old: 10 years in a psycho-neurological institution. Her mother could no longer cope with her behavior: she heard voices, did not eat, ran away from home. The woman spoke clearly and showed no signs of active psychosis. She had some physical problems with her legs. She took medications, but she could not say which ones and in what doses: "The doctor knows best." She gave the impression of a "prepared" client; as a result of a long stay in a psycho-neurological institution, she can no longer imagine another life - life in society. She said she was afraid to live on her own.

Woman, 36 years old: As an orphan, she was transferred from an orphanage to a psycho-neurological institution when she was 18 years old. She has a sister in Lugansk. The only diagnosis is epilepsy. All day long she spends time in the rest room and does the cleaning. She would like to live independently in society, but receives a very small pension. At the same time, due to her long stay in the psycho-neurological institution, she lost confidence that she could feel comfortable in a city where people “look down on you”. She speaks very clearly. Life in a psycho-neurological institution is her tragic fate. Obviously, it would be easy to support her in her desire for rehabilitation and resocialization.

A woman, about 80 years old: no diagnosis - according to her, she entered the psycho-neurological institution quite healthy and strong two years ago. She is a geologist (hydrogeologist) by profession and has worked in this field. Got here urned out after the death of her husband: she was sent by her son, a well-known urologist. He demanded from his mother that she leave the apartment and all her property. She also has an adult daughter, also a doctor. The children visited her only once. She was very emotional, talking about her stay in the psycho-neurological institution and the attitude of children. She brought with her personal items (clothes, books, photographs). She complained of dizziness and said that she would ask the director to send her for tests and prescribe medication. She also remembered that she had money in the bank, but she could not use it because she was not allowed to leave the psycho-neurological institution. According to the monitors, this woman should not stay in the psycho-neurological institution, she should have support in society and live in her own apartment.

Man, 58: The nurse tried to intervene and got angry that we wouldn't let her. I got into to psycho-neurological institution three years ago. Before that, he lived with his brother and mother in an apartment. After the death of his mother, the brother married, and since there was no room for him in the apartment, the brother placed him in a psycho-neurological institution. He hopes that one day his brother will take him home. His only diagnosis is problems with his teeth, but there is no dentist in the psycho-neurological institution. He gave a depressed impression, which is understandable, given the conditions in which he has to live in the absence of any signs of mental illness.

About clinics

Kamyshevsky psycho-neurological institution is located in a very remote place, which is almost impossible to reach. The question arises: can the institution receive assistance and support in case of an emergency and what kind? As a result of this, and also because of the proximity of the demarcation line, there were almost no visits from relatives. Residents of the psycho-neurological institution also have little chance of leaving the institution due to the proximity of minefields. Other means of communication with the outside world are rather limited.

Mobile phones are taken away, and you can use them (to call relatives) for one hour - from nine to ten times a week. And there is no opportunity to talk in private (only in common areas, in the assembly hall).

The director, an authoritarian type of leader who has worked at the psycho-neurological institution for ten years, has no idea about the services provided in the institution, and therefore could not conclude what reforms are necessary and real. When asked how many residents of the orphanage could return to society, he replied: "What kind of society?"

The psycho-neurological institution is surrounded by high walls, there is a guard at the entrance. The institution was designed for 260 clients, but due to the military conflict, now 328 people live in it, 122 of whom have been recognized as incompetent. The term of stay in a psycho-neurological institution is from three to 40 years; once there, it is almost impossible to go back into society. The psycho-neurological institution was well heated and clean, and the clients were well fed. Clients showed no visible signs of excessive drug treatment and/or physical abuse.

The clients of this psycho-neurological institution are diagnosed with the same diagnoses as in other psycho-neurological institutions: neurological diseases (epilepsy and senile dementia), mental disorders (mainly schizophrenia), alcoholism and developmental problems (Down syndrome and intellectual disability). Some clients were placed in a psycho-neurological institution for social reasons - for example, they were transferred here from an orphanage after reaching the age of 18. A significant number of clients should be able to live outside the psycho-neurological institution, leaving this demoralizing environment, receiving the necessary help and support.

The clients of the psycho-neurological institution have few personal belongings. They do not even have personal underwear and bed linen. Bed linen is changed once a week. Winter clothes and boots were locked in a separate building along with other things. According to the director, "they don't need them." In general, there were not enough winter clothes and shoes for all the clients of the psycho-neurological institution. Therefore, they could not go for a walk and were forced to sit in a psycho-neurological institution, doing nothing.

In cases of acute behavioral crises in particular, the psychiatrist says he consults with other staff about steps to be taken to reassure clients. The psychiatrist, who proudly told the group that he had worked in psychiatry for 45 years, was unable to explain exactly what measures he had in mind.

The Slavyanskiy psycho-neurological institution is surrounded by high walls, the entrance is guarded. The institution is designed for 350 people, but because of the war, 586 people live here. Of these, 442 are legally incompetent, as a result of which they are completely dependent on their guardians (relatives outside the psycho-neurological institution or the psycho-neurological institution administration). The doctor on duty suggested that about 30% of clients could return to the community.

The main problems that were identified by the doctor on duty were the lack of medicines, the absence of a dentist, and the fact that many relatives stopped visiting clients because they live in the occupied territory of the Donetsk region. The regime in the psycho-neurological institution is less strict. Clients can go to a store or church accompanied by staff - to avoid the possibility of a cruel treatment. Clients had personal belongings with them, they were allowed to have phones. All clothes and bed linen were personalized (marked). Clients are allowed to take a shower at any time, every six days there is an opportunity to visit the bathhouse.

The management is considering refurbishing one of the buildings to turn it into a geriatric center, but also agreed with the proposals of members of the monitoring group to create a rehabilitation center in which clients would prepare for their return and integration into society.

For young women, the only way to leave the psycho-neurological institution is to find a man who is ready to marry. Four weddings have already been celebrated in the psycho-neurological institution, two more will take place in the near future. However, there were no other cases of return to society. Another way out of the psycho-neurological institution is due to natural causes - in 2016, 19 deaths were registered.

The Vinogradovskiy psycho-neurological institution is relatively small, it was built in 1977. 42 clients were declared incompetent. Of these, only 13 people have guardians outside the institution.

There was a caustic spirit in all psycho-neurological institutions, it was everywhere, but especially in the room where during our visit there were about 40 residents who were watching TV. The smell of unwashed bodies, which permeated clothes and everything around, was sometimes so heavy that it was hard to breathe.

The only form of "therapy" is helping to distribute bread in the cafeteria.

According to some nurses, especially among young visitors, it would be possible to live in society, receiving support, but this is not happening. Psycho-neurological institutions became the final destination of their lives.

Novoborovsky psycho-neurological institution is similar to prison and is located in a remote place, hidden in the forest. It is difficult to get to it, although in fact it is not that far from the nearest village.

In this sad atmosphere live 120 men between the ages of 20 and 80, of whom 90 have been declared incompetent. Expelled from the outside world, they carry out their lives here.

According to the director, who has been in office for 19 years and has an agricultural education, all the clients of the psycho-neurological institution have mental disorders, although he could not name which ones. The psycho-neurological institution does not have its own psychiatrist, but clients are regularly visited by a specialist from another institution.

The director stated that there were only a few "cases" (he did not say "person") when someone left the psycho-neurological institution to live with their relatives. Some of them, however, returned after their condition worsened. The director said that perhaps 5-10 people will be able to leave the psycho-neurological institution at some point, but the vast majority will spend the rest of their lives in these walls.

On the whole, visits to psycho-neurological institutions left a depressing impression. While the changes in the country are aimed at eradicating the soviet past, for these people the system has not changed, they are isolated and do not participate in public life in any way. An important positive aspect is that psycho-neurological institutions provide simple but sufficient food, warmth and shelter for clients. In some institutions, employees genuinely care about the well-being of their clients. However, as a rule, this happens in combination with a high level of paternalism, which leads to a further erasure of the individuality and free will of the clients of psycho-neurological institutions.

Only in one psycho-neurological institution did the members of the monitor group meet the administration, which understood well that the situation needed to be changed and that the lives of clients were connected with difficulties. However, it seemed to the group that did not have the opportunity to radically and structurally improve the situation. This can be explained by endless daily problems, the solution of which does not allow planning structural and long-term changes. And these problems give the directorate the same institutional character as the clients of the psycho-neurological institution. It was also the only psycho-neurological institution that did not have the characteristic all-pervasive "boarding smell" that its residents, staff and visitors are impregnated with and which cannot be avoided or got rid of.

Even if we take into account the difficult living conditions for many Ukrainians in the regions, it should be noted that the clients of psycho-neurological institutions are generally deprived of any meaningful life. At the same time, the lives of many psycho-neurological institutions clients could be filled with meaning in a simple way, by allowing them, for example, to cook food for themselves or cultivate garden beds, the harvest from which would be an addition to the basic and rather monotonous food provided in psycho-neurological institutions. One woman complained about the quality of the borscht, and when we asked if she could work in the kitchen (then she could guarantee the high quality of the food), she noticeably cheered up just talking about the possibility of such a prospect.

There are many ways in which you can diversify the client's employment so that he creates his own cozy homely atmosphere and develops his own individual day program that would help fill his life with meaning..

Despite the fact that in all psycho-neurological institutions visited, clients are provided with food, warmth and a roof over their heads, none of the institutions met the material support requirements. Most institutions were not adapted for people with physical disabilities: there were no ramps, a sufficient number of wheelchairs and other technical means. In some establishments, chemical toilets were placed next to the beds of lying clients, leaving people not only deprived of personal space, but also in unsanitary conditions.

The monitors remembered the remark of one of the regular psychiatrists that he did not intend to tell us what means he uses to return clients to a "normal" state.

Most psycho-neurological institutions have large areas that could be used much more efficiently. In none of the psycho-neurological institutions there was any indication that the clients tended the gardens, grew their own vegetables, could use their home-made products in the kitchen, which would be available for private use. Many of the psycho-neurological institutions' clients come from rural areas where owning a vegetable garden is an essential part of life, and providing such an opportunity would fundamentally change their daily lives.

In all the psycho-neurological institutions visited by the group members, there was a shortage of staff (eg rehabilitation specialists, occupational therapists). In addition, the staff is not trained to work with clients on a person-centered basis, provide individual services aimed at empowering, attracting clients to household activities, encouraging them to be active. There was practically no interdisciplinary interaction and social support.

The system of psycho-neurological institutions in Ukraine is outdated, inhumane and should be fundamentally reformed, the monitors noted in their conclusions. A multidisciplinary team of mental health professionals should review each client's medical records. The monitors had serious doubts about some of the diagnoses, and it seems that revising them will greatly help develop individual plans for treatment and rehabilitation.

There is an urgent need to provide clients with personal space in all aspects of life: every person has the right to privacy, satisfaction of personal needs, should be able to be alone with himself whenever he wants. Sanitary facilities must be equipped in such a way that personal space is respected. The current institutions are based on the desire for total control, which is therapeutically harmful and seriously damages the human dignity of the residents of psycho-neurological institutions. The personal files of all incapacitated and partially incapacitated clients should be reviewed in order to restore their legal status.

Improving the qualifications of medical personnel: training of nurses in Ukraine is insufficient, especially in caring for people with mental illness or intellectual disability. The training of (psychiatric) nurses should be brought to the European level and nurses should have an equal say in a multidisciplinary team and within their professional responsibilities and decision-making abilities. Their training should focus primarily on rehabilitation and recovery.

There is a lack of well-trained professionals, and some specialists, such as rehabilitation therapists, occupational therapists, social workers, are practically absent in the system.

It is necessary to create mechanisms to support the family: in most cases, except when the family was the reason for institutionalization (for example, a father or a husband is placed in a psycho-neurological institution because he was "too troubled"), the family is the most important support resource for people with mental illness or intellectual disability.

It is obvious that in a country where there are 145 psycho-neurological institutions, where 60 thousand people live, changes cannot happen immediately. Reforms at the individual and group/institutional level, as well as the reform of the current legislation in the field of the realization of the rights of people with mental disorders, should be carried out immediately at the national level through the change of normative legal acts, in parallel with the implementation of a pilot project in several such institutions. According to the members of the group, Donetsk region should be one of such pilot regions for a number of reasons. First, the destruction of facilities such as the Slavyanskiy Regional Psychiatric Hospital caused a crisis that should be seen as an opportunity, starting to develop the range of social services provided for people with mental disorders in the community and outpatient treatment. In addition, the management of the Slavyanskiy Psycho-Neurological Institution is focused on reforming the institution, in particular, expanding the list of social services provided to psycho-neurological institution clients.

Yulia Pievskaya, member of the monitoring group:

Julia Pievskaya

— During the presentation of this report at the ombudsman's office, the head of our monitoring group, Robert van Voren, said that what we saw during visits to psycho-neurological institutions was absolute evil. Yes, unfortunately it is. Absolute evil and absolute grief. And it's not about living conditions - compared to what it was 10-15 years ago, the situation has certainly changed for the better. And the problem is not in the staff of these institutions, who are also hostages of the system. The problem is that a person, getting into a psycho-neurological institution, completely loses his personality, his inner world. This conveyor grinds everyone. Including those who should not be there. According to specialists working in psycho-neurological institutions, 30% of people, despite their illness, could well leave the psycho-neurological institution and live a normal life: start a family, do simple work, serve their needs. During the trip, we saw completely safe clients of psycho-neurological institutions, who, nevertheless, once there, can no longer escape from the system.

Compared to prison, from my point of view, life in prison looks more hopeful, because a person convicted of a crime knows that his term is over, that in two years or ten years, he will be released. A person, sentenced by his illness to life in a psycho-neurological institution, knows that this is forever.

I felt it every minute of our stay in the psycho-neurological institution. It was one of the sharpest thoughts that did not leave me - in an hour we will leave here, breathe in fresh air, get into the car and drive away. And they will remain. And this old woman who smiled and stroked my hand, and this young woman who said she loves to sing very much, and this man who proudly showed what things he made from wood ... will remain here forever.

The monitoring was organized with the support of the Ministry of Foreign Affairs of the Netherlands, a group of experts from the International Foundation "Human Rights in Mental Health - Federation Global Initiative in Psychiatry" and the office of the Commissioner of the Verkhovna Rada of Ukraine for Human Rights.