Interview content

Self-introduction and current activities

The effects of the COVID-19 pandemic on people affected by mental disorders and their activities

Mr. Horiai’s opinions on Mental Health 2020 and his response to Perspectives 1-5 and Recommendations

Mr. Horiai’s perspective on future mental health policy

 

 

Mr. Kenjiro Horiai (YPS Yokohama Peer Staff Association)
“As Someone with a Mental Disorder, I Want to Help People Facing Similar Circumstances”

• Self-introduction and current activities

I am affected by a mental disorder and am actively working to support people with mental disorders in Yokohama City. In 2003, when I was 22 and in my third year of university, I started experiencing schizophrenia. I have been hospitalized four times, and not always voluntarily. I have also experienced hospitalizations through both the “admission by legal control” and medical protective hospitalization systems. While I regularly visited a hospital day care service from 2010, I do not like taking medication, so I tried to decrease or eliminate my use, only to fail and end up hospitalized. That cycle repeated several times. By the fourth time I was hospitalized, I realized that I could not go on like that.

At the time I came to that realization, I was 34 years old and had no working history, so I started visiting a Type B Support for Continuous Employment Center in Yokohama City called Shalom Home. My elder brother also has schizophrenia and used to be a regular at Shalom Home. He had become a member of their staff by the time I started going there. After two years of watching my brother and the other peer staff energetically working as a Shalom Home user, I joined them as a peer staff member on August 1, 2016.

Before that, I established the YPS Yokohama Peer Staff Association together with around 20 core members in 2015. I continued my activities as a representative of people with mental health by giving lectures or by submitting articles to magazines and have been engaged in those activities in parallel with my work at Shalom Home since 2016. Afterwards, I transferred to Shalom Konan in Yokohama City, another Type B Support for Continuous Employment Center, in 2019. Shalom Konan is unique in that peer staff, who are people living with mental disorders, make up around half of its total staff.

In May 2020, I established the Kanagawa Human Rights Advocacy for Psychiatric Health center (also known as KP), which engages in support activities by providing telephone consultations to people hospitalized in mental hospitals, people who regularly visit mental hospitals, and their families, friends, and other related parties. During my personal experiences being hospitalized four times, I experienced many things I did not accept or that left me with painful memories, so I have devoted myself to helping other people with mental disorders who have been placed in similar circumstances.

 

• The effects of the COVID-19 pandemic on people affected by mental disorders and their activities

People with mental disorders tend to experience strong feelings of anxiety, so it is no surprise that many people are refraining from outings right now due to concern towards COVID-19. As a result, the number of people using facilities is decreasing, and I have heard this has caused many users to experience health issues because they feel suffocated. Many of them had difficulties in their family relationships to start with, so I think being forced to stay at home is making their situations very difficult.

YPS Yokohama Peer Staff Association voluntarily suspended in-person events from before the Government declared a state of emergency. After a period of inactivity, we started holding our secretariat meetings online in June. We cancelled this year’s Kanagawa Pier Festival (our annual festival for people with mental disorders held every June) and we held the graduation ceremony for this year’s peer master program (our peer staff and peer supporter training program) several months later than originally planned.

Kanagawa Human Rights Advocacy for Psychiatric Health center is still unable to continue its main activity of providing face-to-face consultations to people with mental disorders who are hospitalized. As a COVID-19 countermeasure, many hospitals have implemented policies in which only family members are allowed to visit their hospitalized relatives, so we have no choice but to rely on written letters and telephone calls to communicate.

 

Opinions on Mental Health 2020

• Mr. Horiai’s opinions on Mental Health 2020 and his response to Perspectives 1-5 and Recommendations

Perspective 1: Expand policies that raise mental health literacy in society and promote the activities of those most affected
Although this is not only limited to its use within Mental Health 2020, I have been bothered by the use of the phrase “those most affected” for some time. The meaning of “people with mental disorders” is clear – that it refers to individuals with mental disorders – but “those most affected” is a bit of a euphemism. Mental Health 2020 often uses “people with mental disorders” and is easy to understand. Also, I hope that a Basic Act for mental health is enacted.

First of all, while Mental Health 2020 recommends requiring Mental Health Review Boards to include people with mental disorders as board members, the fact that they were not already included is a significant problem. Perspective 5 says, “Each of these items aims to contribute to increasing QOL for people with mental disorders, so it is essential for people with mental disorders to be included in those discussion forums,” and I think that is an important point.

Consider early intervention and appropriate healthcare together as one
On the topic of the effectiveness of early intervention, while I would like for people to proactively intervene if they can provide appropriate medical care, considering the current state of mental healthcare, I am forced to conclude that early intervention is actually dangerous. That is because early intervention may result in people with mental disorders suddenly being drugged or hospitalized. Therefore, we must think of “early intervention” and “proper medical care” together as one, and I would like for Mental Health 2020 to say as much.

Provide education to improve health literacy and eliminate self-stigma
I feel that self-stigma can be a significant problem among people who have had long periods during which they went untreated because they were reluctant to see a psychiatrist. They may also have negative preconceptions towards psychiatric medicine and people with psychiatric disabilities, so I think education to improve health literacy is important for eliminating self-stigma.

Mental Health 2020 also discusses the need to improve educational curriculums for mental health and mentions Australia’s “Be You” educational program as an example. That program provides a variety of information, such as how to respond to bullying, so I think it would be good if a similar program was implemented in Japan. Many people with mental disorders are or have been the victim of bullying at school. Bullying is a problem and effective measures against bullying are sure to improve mental health, so I would love for such measures to be taken.

On the other hand, people can choose whether or not to go to school. I did not want to go to school very much myself, so I think we should also consider people’s right to not attend school. In the event people exercise that right, we would need a system to provide mental healthcare to people of middle- and high-school age outside of schools.

While I saw the word “equality” and references to positions of equality within Mental Health 2020, as long as there are hospitalization systems like admission by legal control and medical protective hospitalization, there can be no “equality.” I have personal experience with a system in which I was forced to face immediate, involuntary hospitalization if I refused to take medication. I thought it would be nice if Mental Health 2020 included a specific description of what is meant by “equal positions” or “equality.”

Mental Health 2020 mentions that the phrase “those most affected” includes not only people with mental disorders but also their families. My personal opinion is that family members cannot be counted amongst “those most affected” because there are sometimes conflicts of interest between people with mental disorders and their families.

People with mental disorders should play active roles
When promoting the activities of people affected by mental disorders, I believe that people with mental disorders should not conceal their name or face and openly share their opinions with a sense of responsibility. While there are some people who always tend to speak in a victimized or offensive manner, I want there to be more people who can speak out and share their opinions to deepen understanding in society.

Currently, peer supporters are only placed within a limited range of specific roles. In the future, I want them to be active not as amateurs but as welfare professionals with specialized knowledge on social resources and systems. I think it is safe to say the reason the peer supporter system has not become widespread is because there is no job title or other professional role that was originally intended for peers. Based on that, I think it is important that Mental Health 2020 touches upon these circumstances in the recommendations saying, “To spread know-how concerning the effective use of peer supporters, positive examples of peer supporter use, their effective placement, and ways for facilities to implement them must be shared” and “Gather evidence on how peer supporters benefit people with mental disorders.”

Perspective 2: Establish systems for providing care that are integrated into communities, compatible with everyday life, and meet the needs of people with mental disorders.
Medical protective hospitalizations should be eliminated. Just who is Article 33 of the Act on Mental Health and Welfare for the Mentally Disabled referring to when it talks about people “requiring hospitalization for medical care and protection”? It does not list anything specific, so the conditions that must be met for medical protective hospitalizations are too vague. I think that a flawed law like this one should be revised or repealed.

A report entitled “Opinions of the Mental Health and Welfare Law Revision Committee” published by the Japanese Society of Psychiatry and Neurology in March 2016 provides conditions for who requires medical protective hospitalization. Specifically, it lists individuals whose “capacity for independent decision-making concerning their need for treatment is obstructed by a mental disorder.” However, I worry that if the individual in question refuses hospitalization, those trying to hospitalize them will just say, “They lack decision-making capacity,” and will not take that person’s wishes to heart. It also mentions people for whom “it has been determined that treatment other than hospitalization is unlikely to improve symptoms or prevent symptoms from worsening,” but how exactly is that determined? It proposes no improvements and lacks specifics, so I cannot expect significant progress on this issue.

Mental Health 2020 also points out that the expenses for in-hospital medical treatment account for a large portion of overall healthcare expenses for mental or behavioral disorders. I have heard that some hospitals have been able to make a profit through in-home care. Those successful examples might be useful as points of reference considering future healthcare provision systems.

Establish systems that do not rely on family support
While one of the recommendations says, “Enhance inpatient care systems to fully meet the needs of people with mental disorders,” I would like to know, specifically, what those needs are. It also calls for “reducing the burdens of family members and supporters of people with mental disorders.” I think it is unfortunate that family members are grouped together with supporters. While I talked about how family members are not among “those most affected earlier,” at the same time, I think it is also appropriate to not think of family members as supporters. Considering family members to be supporters can be linked to the existence of the medical protective hospitalization system, so I think it is best not to count on family support.

Mental Health 2020 introduces the U.K. system for involuntary hospitalizations, which requires the inclusion of Approved Mental Health Professional (AMHP), such as social workers, within the involuntary hospitalization process. But, shouldn’t their involvement be a given? I think Japan should also make it so inspections from third parties who are not physicians are required before someone can be hospitalized involuntarily.

When helping someone select housing, in my experience, even if you recommend living in an apartment or a group home to someone, there are many people who want to live with their family at their family home. However, if the situation develops in a way that they cannot live with their family anymore, they cannot leave the hospital and the length of their social hospitalization is extended. The longer they are hospitalized, the greater their anxiety towards living an independent lifestyle in terms of employment and housework becomes. Nothing good comes of longer social hospitalizations. The current state of the hospitalization system itself is creating serious problems.

There are times when families being over-protective restricts the independence of people with mental disorders. Therefore, I think it is best for families to let them be. I want for families to do what the person with a mental disorder really wants to have done for their own sake. That would make it better for us with mental disorders. It is a burden to have people constantly fussing over you, so it’s better to just leave us be.

There is no appropriate form of physical restraint
Mental Health 2020 mentions “appropriate physical restraint,” but what exactly is “appropriate” physical restraint? The practice of physical restraint should be abolished.

While the proposal points out that “healthcare institutions and local health or welfare facilitates must cooperate” to enable people with mental disorders to live in communities, hospitals are isolated environments, which makes cooperation quite difficult. Cooperation is definitely necessary, so efforts to build a framework for smooth cooperation must be taken.

Another question I have is, why are hospitalizations for people with mental disorders so long? I would like for the real-world circumstances surrounding psychiatric hospitalizations to be investigated and analyzed so we can find out why.

While the proposal mentions that “some have voiced concern towards the possibility that helping people transition from hospitals or care facilities to communities may increase healthcare costs,” the medical costs for hospitalizations are clearly higher.

Promote multidisciplinary team treatment without relying on pharmacotherapy
I would like to see further efforts to promote multidisciplinary cooperation and team treatment. Moving away from a structure in which physicians hold a disproportionate amount of authority to involve other professionals from a variety of occupations such as nurses and occupational therapists will make it possible to work within the environment of the individual in question without relying on pharmacotherapy. I think cognitive behavioral therapy (CBT) is also effective, so I would like for CBT to be actively promoted.

I have personally used online medical services during the COVID-19 pandemic. They are very useful, so I hope many hospitals will take proactive steps to introduce such services in the future. I was able to have a short doctor visit while I was at work, so I think online medical services will provide great benefits to people in remission (which is when people are relieved of symptoms for temporary or continuous periods).

Perspective 3: Build an infrastructure for community living that provides places to live, places to work, and places to belong.
Use peer supporters to ensure hospitalized people stay informed
Mental Health 2020 cites a survey by the Ministry of Health, Labor and Welfare (MHLW) that found the main reason hospitalized people did not want to be discharged was “economic reasons.” In spite of the fact that there are a variety of public support systems, many hospitalized people do not know such systems exist and are forced to live with great anxiety. We need to inform people about support systems. To do that, however, a system for providing information from outside is necessary because caseworkers have limited time to interact with each patient. That is where peer supporters can fit in. I think one method for overcoming this issue would be by creating opportunities for peer supporters to visit hospitals to explain what social resources are available.

It is natural for hospitalized people to feel uncertain about their ability to live alone and maintain a household. This gives us a glimpse of how current circumstances prevent them from smoothly transitioning out of the hospital because post-discharge independent living support is not being provided.

The Employment Transition Support System for Persons with Disabilities makes it possible for people to be paid wages at certain facilities. Also, if we are thinking of improving QOL and achieving respect for the rights of people with mental disorders, we should consider it a violation of human rights to bar people with mental disorders from doing part-time jobs. I think it is important for Mental Health 2020 to state clear expectations for a more flexible system.

Establish systems that increase employment opportunities that benefit both people with mental disorders and employers
Mental Health 2020 points out the problem of insufficient wages at employment programs, saying “there are many cases when the earning potential of program activities is not enough to cover service usage fees.” This problem is also occurring at the facility where I work. There are many cases in which married people are charged usage fees, so the sad reality of the situation is that many of them have to reduce facility visits as a result. This problem is rooted in the fact that usage fees are determined by income, which is referred to as their “ability to pay.” There are even people who find ways to pay service usage fees while in debt.

There is also a contradiction in the system in that the more users a facility employs, the less remuneration program operators receive. There are even cases when users with the potential to find employment early are encouraged to continue using employment services for the maximum usage period of two years to ensure program operator income.

I think one of the main reasons for this is because although employment support offices have on-site welfare professionals, they do not have on-site employment professionals.

Create opportunities for people to receive the right education at the right times
While we do have various support systems right now, I would be extremely grateful if people with mental disorders were given more opportunities to receive education, because they tend to experience their first symptoms when they are school age. I am very happy that Mental Health 2020 mentioned this need. Based on my own experiences, I feel I have received less education and lower quality education compared to people without mental disorders, so I believe that lack of education is one factor that acts as an obstacle to recovery.

It is also important for people to establish their own living environments
I would like us to think of the people who want to live independently in their communities but are not allowed to do so by their attending physicians. One aspect of that is they are only trying to protect the physical health of their patients, but my personal belief is that autonomy should always be the top priority.

While group homes are preferable to hospitals or unwelcoming family homes, I think we must not ignore that group homes sometimes have overbearing rules that infringe on the human rights of their residents. I heard that some group homes implemented lockdowns in response to the COVID-19 pandemic. If group homes are supposed to be residences rather than facilities, I find it difficult to understand why they were able to do that.

Perspective 4: Create systems for gathering the data and information needed for evidence-based policy-making and policy evaluation.
The content of Perspective 4 is highly technical, so the comments I can offer will be limited in scope. I think it would be good if Perspective 4 touched upon QOL and mortality rates. QOL is something that we must pursue no matter what, and all our efforts are for nothing if someone loses their life. Furthermore, I would like healthcare professionals to be highly aware of mortality rates. Some say we have shorter average lifespans than people without mental disorders. I have also heard that some studies found that the risk of sudden death for second-generation antipsychotics may be even higher than first-generation antipsychotics. I sincerely wish for the construction of systems for accumulating evidence by collecting data and information to advance, and I would also like for efforts to accumulate evidence for non-pharmaceutical treatment methods to be promoted.

Perspective 5: Establish an environment that allows for multi-stakeholders to engage in continuous discussions on mental health policy.
While Mental Health 2020 points out that there are no local government bodies that fill the central roles in responding to mental disorders within the Integrated Community Care System, my personal belief is that although the Integrated Community Care System has been established, in its current incomplete state, it is all form and no substance. While it is good to hold repeated discussions, I think it would be better to take action quickly.

I think Councils on Promotion of Measures for Persons with Disabilities are the prime example to look at when it comes to the lack of inclusion for people with mental disorders. Those councils are operated solely by supporters and there have been cases in which facility users were not allowed to join them. According to Article 89-3 of the Act on the Comprehensive Support for the Daily and Social Life of Persons with Disabilities, the purpose of local self-reliance support councils is to “share information related to the issues pertaining to the support system for Persons with Disabilities, etc. in local communities through mutual coordination and liaison among the relevant institutions, etc.; and deliberate on the administrative system in the light of the actual circumstances in local communities while aiming to cooperate closely with relevant institutions.” However, it is difficult to say that these councils have successfully improved support systems by reflecting the opinions of the people they are meant to support.

 

• Mr. Horiai’s perspective on future mental health policy

Almost everything I want to say is included in Mental Health 2020. This is something that I always say, but the three main issues within mental health policy are hospitalization practices, pharmacotherapy, and low incomes.

As for hospitalization practices, while it goes without saying that social hospitalizations should be eliminated, one issue that is less visible is the fact that there are many people who remain hospitalized for years because their condition is truly severe. Because institutions have kept those people hospitalized for so long without showing results, they should admit that the treatments they are providing are ineffective and allow the people in question to be discharged. If chronic patients and people admitted for social hospitalizations are discharged, it will lead to a dramatic reduction in hospital beds. We should smoothly transfer the manpower that had been devoted to providing that care to communities to further improve support for visits, day care centers, and in-home support. This is something that both users and mental health and welfare providers will want.

In pharmacotherapy, prescription practices must be improved and the use of non-pharmaceutical treatment methods must be expanded. Just like I mentioned earlier on the use of hospital treatment, if it is obvious that a treatment is not working, we should give up on that treatment and adopt other methods. As for how to achieve that through policy, I think policy must aim to reduce the amount of prescriptions as much as possible while encouraging the use of non-pharmaceutical treatment methods.

To address the problem of low incomes, the minimum wage must be increased and measures to improve employment practices must be taken so that there are no more working poor. That might include increasing wages at day care facilities that are generally referred to as “worksites.” Since it will be difficult to increase pensions and livelihood protection payment levels any further, I think it would be better to help people with mental disorders recover their health so they can obtain employment and increase their earnings. Personally, I would like to continue advocating to tell people how wonderful it is to work and to share the joy of earning an income.

Interview date: October 13, Online (Zoom)

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“Mental Health Policy in the Eyes of Those It Affects” Interview Series

Since its establishment in 2004, Health and Global Policy Institute (HGPI) has worked as a non-partisan think tank under the guiding principle of helping citizens shape health policies by generating policy options. Through conversations with multi-stakeholders including members of the public and parties most affected in Japan and abroad, HGPI amplifies the voices of citizens in proposals and statements in a global context to contribute to the realization of evidence-based health policies.

The knowledge provided to HGPI from people affected by mental disorders throughout our ongoing efforts for mental health in a project that began in 2019 led to the presentation of “Mental Health 2020 – Proposal for Tomorrow: Five Perspectives on Mental Health Policy” in July 2020. Moving forward, we will help empower people affected by mental disorders to independently engage in forming mental health policy and have their voices be heard by providing access to knowledge from organizations representing those most affected in other disease fields in Japan through collaborations with other HGPI projects and by creating opportunities for opinion exchanges and discussions with organizations representing people affected by mental disorders from abroad.

As part of this vision, we have started publishing a series of interviews featuring people affected by mental disorders. By incorporating their honest opinions in the aforementioned policy proposal and by disseminating their perspectives in both Japanese and English, we will contribute to the creation of mental health policy that further improve conditions and quality of life (QOL) for people affected by mental disorders in Japan.

■ Interview 1: Mr. Ken Udagawa (COmmunity Mental Health & welfare Bonding Organization Chairperson)
“Elucidate the physiology of recovery by improving longitudinal studies”

■ Interview 2: Mr. Yasuhiro Obata (Secretary General, The National Federation of Associations of Families with The Mental Illness in Japan (Minna-net))
“Placing Mental Health at the Center of National Policy for Harmony between the Healthcare System and Communities”