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[Interview Series] “Mental Health Policy in the Eyes of Those It Affects” Interview #1: Mr. Ken Udagawa “Elucidate the physiology of recovery by improving longitudinal studies”

[Interview Series] “Mental Health Policy in the Eyes of Those It Affects” Interview #1: Mr. Ken Udagawa “Elucidate the physiology of recovery by improving longitudinal studies”

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.

 

“Mental Health Policy in the Eyes of Those It Affects” Interview Series Interview 1: Mr. Ken Udagawa (COmmunity Mental Health & welfare Bonding Organization Chairperson)


Interview content

Self-introduction and current activities

The effects of The effects of the COVID-19 pandemic on Mr. Udagawa’s activities and the people affected by mental disorders they involve

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

Priority issues for mental health policy moving forward

 

“Elucidate the physiology of recovery by improving longitudinal studies”

  • Self-introduction and current activities

Starting in 1998, I started participating in a Japan-US exchange program for people with mental disorders for which I visited the U.S. once or twice per year. I also served as one of its program representatives. I have been involved in NPO COmmunity Mental Health & welfare Bonding Organization (COMHBO) since its establishment in 2006. This year, I became COMHBO’s chairperson.

After helping to establish COMHBO, my work has included publishing the monthly magazine Kokoro no Genki+, making efforts to popularize the Assertive Community Treatment (ACT) program for integrated community support for daily living and the Individual Placement and Support (IPS) program, and advocating for the spread of evidence-based mental health and welfare services. I first learned of the concept of “Recovery”[1]

over the course of those efforts, which led to recovery being covered in the first issue of Kokoro no Genki+.

COMHBO publishes its mental health magazine Kokoro no Genki+ monthly and distributes it to supporting members. The cover model of each issue is someone affected by a mental disorder who we have photographed in a studio and who is featured in an article introducing their story. Even though their stories do not always express a positive outlook, those articles are well-read among our audience. Some of them have been popular for openly discussing the difficulties that the featured person has felt in their life. Our April 2019 issue was a special on disaster preparedness and is being provided free of charge in full at the COMHBO website.

Our mental health lecture series called “COMHBO Pavilion” was renamed “COMHBO Pavilion At Home” starting from its 66th installment to prevent the spread of Coronavirus Disease 2019 (COVID-19) infections. We have been holding the events online ever since. The 67th installment of our COMHBO Pavilion lecture is scheduled for October 24, 2020 and is called, “COMHBO Pavilion Returns! Introducing a New Movement in Mental Health: the Trauma Informed Approach (TIA).”

We are also making ongoing efforts to promote peer support and to energize peer support group activities. We host peer support group meetings in every region nationwide in a style that could be described as, “Say whatever you want, listen as much as you want.” We also publish results of surveys conducted at our peer support groups online.

In our efforts for family support, we translated the Hong Kong version of a program called Family-to-Family that was developed by the National Alliance on Mental Illness (NAMI) in the U.S. and introduced it to Japan, where we now hold family-oriented peer study groups hosted by the families of people with mental disorders. In 2015, we developed a tool kit for school education programs for promoting mental health literacy. That tool kit can be found on our website.

Another effort we made in response to the ongoing COVID-19 pandemic was to establish a message board on our website where people can write about their feelings of unease or stress, send messages to themselves or others, and share their hopes for the future with everyone. We also plan to hold the upcoming 12th installment in our forum series Recovery Forum 2020 online for the first time on September 19-20, 2020.

 

  • The effects of the COVID-19 pandemic on Mr. Udagawa’s activities and the people affected by mental disorders they involve

Past COMHBO activities gathered people such as people with mental disorders, their family members, members of the general public, and mental health specialists for meetings where those parties could deepen mutual understanding while building close and equal relationships. However, the COVID-19 pandemic has prevented us from holding those events. We have also taken our activities promoting peer support online.

Looking at our website’s recent access counts, visits to the sections on our website on depression or depressive states saw an increase of about 10% compared to normal during the COVID-19 pandemic. However, it appears as if those access numbers have been trending back down to normal since the beginning of August 2020. It is possible that everyone’s concerns have gradually eased. However, because COMHBO members represent a wide variety of disciplines, we have seen that the normalization of remote work has resulted in some people becoming even busier than they were before. At the same time, the pandemic has left some of our members who are freelancers without any work at all, harming their mental wellbeing. It is a difficult situation.

 

Opinions on Mental Health 2020

  • Mr. Udagawa’s 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.
I think the inclusion of recommendations saying, “Promote the activities of people with mental disorders and those close to them to improve mental health literacy for all of society” and, “Expand education on mental health in primary and secondary education and by reinforcing support services” is highly significant.

While Perspective 1 does mention “Promote peer support activities,” currently, many peer support staff are employed in menial roles for minimum wage after completing their involvement in Government initiatives. In the past, COMHBO has been making nationwide efforts to gather the opinions of people affected by mental disorders and encourage peer support. In every region, we can always find someone among those affected by mental disorders who has a statement to share. Whenever I visit a region for a lecture, I have always said, “Next time, please have someone affected by mental disorder from the local community join me on stage.” Starting with my own activities, I would like to change the norm in which the same people are always stepping forward to share their stories.

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.
Reading the content of the recommendation concerning social hospitalizations, I was given the impression that it was written from the perspective of policy-makers and felt that the content would be more substantial if it were based on the perspectives of people affected by mental disorders. As for the background describing why social hospitalizations occur, I think the problem rests with failure to discharge people from hospitals rather than community acceptance towards people who have been discharged. After all, information about Mental Health Review Boards and phone numbers people can call to apply for discharge is posted next to pay phones. However, most hospitalized young people do not know how to use pay phones. They do not carry telephone cards and their mobile phones are taken from them when they are hospitalized. As a result, I think the current system has been hollowed out.

It is important that online medical examinations do not lead to involuntary outreach or healthcare. Of course, certain cases such as suicide require proactive intervention. However, I can think of cases in which suicide risk was not a factor and the person in question could transition out of receiving mental health and welfare services because they were not facing difficulties. The part of the recommendation about the effective use of online examinations referencing the RAND Corporation study is fine, but I think it should also include a statement about paying reasonable consideration to ensuring user privacy.

On the topic of physical restraint, right now, there are times when appropriate blood clot prevention measures are not being taken. This is not mentioned in the proposal. Concerning measures for securing housing, I thought that it would be good if it mentioned incentives to encourage such measures, just as there are for employment for people with disabilities.

One of the recommendations says, “Promote cooperation between healthcare facilities and health, welfare, and educational institutions to promote early diagnosis and improve access to treatment.” Right now, even if people are provided earlier access to treatment, they are still unable to select a hospital and are forced to undergo involuntary examinations. Therefore, it is important to empower people with mental disorders or their families by giving them access to information that allows them to select hospitals.

Perspective 3: Build an infrastructure for community living that provides places to live, places to work, and places to belong.
One section shared an opinion expressed in hearings conducted for the proposal that Type B Support for Continuous Employment programs provide places for people to belong. That section also criticized the payment mechanism for those programs. I felt that critique accurately reflected the perspectives of people affected by mental disorders. Recently, an increasing number of young people are staffing facilities for social recovery, so some of the people providing employment support lack life experience.

I thought the recommendations “Ensure that people with mental disorders can plot their own life courses, including those who wish to consider their medium- and long-term career development” and “Empower people with mental disorders to objectively grasp their own psychological states and allow them the flexibility to adjust their daily lives accordingly” were extremely good points of view. Mental Health 2020 also discusses the Supporting People to Improve Stability (SPIS) employment retention support system, but I think people with mental disorders will be able to obtain more feedback by combining the continuous and subjective evaluation provided by SPIS with objective data on sleep, exercise, or other activities obtained using wearable devices.

Concerning the perspective on forming networks according to local housing conditions, I think real estate professionals have the potential to fill a role as supporters. I think improving real estate professionals’ knowledge on mental health is likely to lower some of the hurdles people with mental disorders face towards securing housing. Also, real estate professionals might be able to provide the type of support needed to help people maintain daily living in communities.

Perspective 4: Create systems for gathering the data and information needed for evidence-based policy-making and policy evaluation
I think statements from people affected by mental disorders are crucial when working to improve reverse translational research.[2] Their quality of life (QOL) only improves when their subjective issues are analyzed in a scientific manner. I think finding a scientific explanation for what is happening within the bodies and minds of people with mental disorders will make it possible for physicians and other specialists to contribute to their personal recovery or empowerment.

I thought the perspective that “It is important that surveys on mental health are conducted as part of annual health checkups conducted at schools, and for the results of those surveys to be used effectively for providing mental health care at schools” was interesting. However, I do not think those surveys should be conducted for screening. Rather, they should be implemented in a way that reveals mental health trends for the entire student body. I would say that surveys on mental health will be important for adjusting the environment.

 

Priority issues for mental health policy moving forward

Linking activities in which people with mental disorders fill visible roles to improving health literacy

Ms. Arima (HGPI): Concerning the item in Perspective 1, “Expand policies that raise mental health literacy in society and promote the activities of those most affected,” what activities do people with mental disorders or organizations representing them have to engage in to promote the activities of the people affected by mental disorders?

Mr. Udagawa: To improve mental health literacy, it is important that people affected by mental disorders get involved in activities in which they are visible. For example, to improve literacy among real estate professionals, it is best if people affected by mental disorders hold direct and frank discussions with real estate professionals. That is why COMHBO holds “Say whatever you want, listen as much as you want” style meetings. I think it is good for people affected by mental disorders to obtain skills that are useful for building the mental health literacy of other people. They can do that by gaining experience at our meetings by having other parties listen to them share their thoughts. Instead of letting those events be normal conversations like one would have over tea, if we could provide various types of training like active screening or group work facilitation, it would be one way to effectively promote the activities of people affected by mental disorders. Budgets for providing training are limited, however, so it is difficult to advance those sorts of plans right now.

 

Education for school faculty and health staff is essential

Ms. Arima (HGPI): Could you please share your opinions on how to get people affected by mental disorders involved in school education?

Mr. Udagawa: In one of my past experiences visiting schools, there was a teacher who said, “There is a child who is always hyperactive in the classroom. Will they develop a mental disorder in the future?” This demonstrated their lack of understanding. I think it is very scary to have teachers like that only teach physical education or health education to children through classroom lectures. On a similar note, training for specialists like school social workers is also necessary.

 

People can help eliminate stigma by sharing their stories

Mr. Udagawa: In the past, when I asked Ms. Sylvia Caras, a person living with a mental disorder who has been engaged in anti-stigma activities for many years, “How should I go about engaging in activities to help eliminate stigma?” She said, “Tell your story to the people close to you.” In short, it is important to put one’s own story into clear terms and to tell it in front of people. I think doing so will improve mental health literacy for the people listening.

 

Place peer supporters close during the early stages of mental disorder

Ms. Arima (HGPI): What sort of framework is necessary for peer support activities promoting self-determination among people affected by mental disorders?

Mr. Udagawa: First, I think it would be good if peer supporters were incorporated into the system and could meet face-to-face with people affected by mental disorders soon after their initial diagnosis. Peers can be important role models for people affected by mental disorders and I would like for training to be provided so they could do that.

On the topic of self-determination, just because someone has a mental disorder does not mean they are inept. However, if they spend too long a period within a protective environment where they do not have to exercise self-determination, they develop the tendency to continue avoiding to do so. It is necessary to establish systems which place peer supporters close to them from the initial stages to help prevent that from happening.

 

Incorporate the functions of halfway houses[3] at short stay facilities

Mr. Aso (HGPI): What sorts of measures are there to encourage the discharge of hospitalized people with mild symptoms and a low need for hospital care?

Mr. Udagawa: I think that halfway houses are necessary. Looking at the 630 survey (in particular, its mental health and welfare reference materials), we can see that almost nobody leaves the hospital alive when hospitalizations are long-term. When we look at the progress of people who have been hospitalized for five years and realize that they might be forced into a situation in which they cannot be discharged for the rest of their life, I think it would be good if there were halfway houses incorporated within hospitals for both people being admitted and people being discharged. I think measures are also necessary to ensure their stays in those halfway houses are as short as possible.

Mr. Aso (HGPI): It seems that the Ministry of Health, Labour and Welfare (MHLW) has yet to compile data on how many halfway houses have currently been established in Japan. I think that is an issue that they should make efforts for.

Mr. Udagawa: I think the respite care system called “short stays,” in which people with mental disorders can access short-term housing, can be used in a similar fashion to how halfway houses operate. However, the current short stay system only provides the family members of people with mental disorders a break from caregiving. I think it would be good to implement short stays into the integrated community care system and use them to determine whether or not someone requires hospitalization.

 

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

We must get professionals at healthcare institutions to obtain an accurate understanding of what is happening to people with mental disorders based on neuroscience or biology so they can understand what is necessary for their subjective recovery. Furthermore, I think physicians must not perceive treatment as ending within the consultation room; I want them to know how we are doing after we have left the consultation room. To achieve that, we must follow the daily living patterns of people affected by mental disorders in a longitudinal manner and, based on policy or research, create a situation in which daily living conditions are communicated even if the people most affected do not put them into exact words.

Interview date: August 17, Online (Zoom)

 

[1] Recovery is defined as “A process which enables people to participate in daily living, employment, learning, and their community. For individuals, recovery can mean ensuring people with disabilities can lead full and productive lives, or it can mean to reduce or mitigate symptoms.” (Department of Community Mental Health and Law, National Institute of Mental Health National Center for Psychiatry and Neurology, https://www.ncnp.go.jp/nimh/chiiki/about/recovery.html).

[2] Studies that conduct basic research based on issues facing patients discovered in clinical settings to find results that can be used in clinical practice.

[3] Short-term living facilities where people can receive support and training to transition back to normal everyday living after hospital discharge.

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