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Description
Until recently, self-help activities of people with their own experience with mental illness (hereinafter MH illness) in the Pilsen Region were represented by two small organizations in Pilsen and Klatovy, self-advocacy is completely in its infancy. No inpatient psychiatric facility in the region involves peer workers.
TOSEVÍ was established in 2019 in the CHRC clubhouse with support of Ledovec as a self-advocacy NGO hoping that it can contribute to strengthening the involvement of people with MH problems both in policy making and mental health care in the region. Last but not least, it strives to spead self-help activities from a regional city to regions so that self-help is more easily available to anyone who suffers from MH illness. We will also promote the topic through public destigmatization events.
After two years of our volunteer activities, we see an opportunity to take our activities to the next level.
Based in CHRC (Clubhouse and Recovery College) in Pilsen and with kind support of the Ledovec, we plan to significantly strengthen the capacity of our organization. We will create and train our team. We will offer regular self-help activities in Pilsen and at least three other places in the region.
We offer a number of educational courses led by people with their own experience with MH illness.
We have agreed on the possibility of involving peer workers at the Psychiatric Clinic in Pilsen, the Psychiatric Department of the Klatovy Hospital and the Lnáře Psychiatric Hospital, and thanks to this project we will launch it.
As co-organizers, we will participate in the Mental Health Days program in the region and strengthen the voice of people with their own experience with MH illness there.
We are also looking forward to being heard at the meetings of the regional working groups on the transformation of Czech psychiatry and at other meetings where it is still "about us without us".
Summary of project results
In the Pilsen Region, at the time of the Toseví’s launch, there were two self-help organizations of people with their own experience with mental illness, Křišťál in Klatovy and Krystal in Pilsen. Their activities were locally and thematically limited. They were not interested in implementing themselves in the field of destigmatization, education and self-advocacy. In the area of self-help, they were more involved in "team activities" (art and craft worskhops 1-3 times per week at two places in the Pilsen region, sometimes they went on a joint trip). These activities are okay, they help people, with experience with mental illness, who like to paint and create, avoid complete social isolation. The founders and people around Toseví have experienced that this is not enough. They wanted to develop self-help activities for people with different interests and activities focused on self-discovery, self-development and, most importantly, recovery. We saw the need to expand self-help, educational and destigmatization activities to smaller towns in the Pilsen region. We felt that in order to make the voice of people with mental illness more heard, we needed to professionalize our organization, and also strive for greater involvement of people, with experience of recovery from mental illness, in the system of care, for people with mental illness. The only professional organisation employing peer workers in the Pilsen region was Ledovec. In Toseví, we wanted to involve peer workers also in the psychiatric wards of hospitals. The Ledovec organisation supported recovery activities in the Ledovec clubhouse. The user self-help association Toseví was created here on the initiative of people with their own experience with mental illness. In the development of our activities, some of the experienced staff from Ledovec have been a great mentoring support. We have faced challenges in the implementation of the project, most of which we expected. It was necessary to find suitable candidates for peer worker positions, to establish cooperation in the hospitals and to support the peer worker''s involvement in the team with the help of tutors (staff directly from the psychiatric wards). A less obvious complexity was finding a way to retain peer workers in the hospitals after the project had ended. No one had yet been involved in the self-help field in the smaller towns in the region and it was untested whether people would be reluctant to come to self-help and training activities because of fears and stigma. There was a need to find suitable candidates for self-help group facilitators and trainers with their own experience with mental illness who had the courage to share their life stories. Creating content for the website was also a big challenge for us as we had no experience with it.
Increasing the capacity of the association
First and foremost, we have strengthened as an organization, grown in personnel, and become recognized in the region and within user organizations across the country. During the project years, the organization has named its goals and values, offered involvement to others, and learned to manage its financial management and administrative duties. The association collaborated with Ledovec NGO, an organization that trained Toseví particularly in management and leadership. In the second year of the project, the association launched its own website www.tosevi.cz and published a brochure on the principles of the association and offer of its activities.
Self-help and education
The association has significantly expanded the range of self-help groups in the region. Throughout the project, the self-help group Pathways to Recovery was implemented in Pilsen, later joined by a self-help group at the psychiatric facility of faculty hospital’s day care centre (these groups continue to be held every week).
Subsequently, it initiated self-help groups in Rokycany, Domažlice and Stříbro (these groups continue to meet once a fortnight). Support and supervision were provided by the moderators of the self-help meetings.
Thanks to the funds from the project, the association provided 2 people with an accredited Basic Course for Peer Consultants in Mental Health Care at CMHCD (Center for Mental Health Care Development) association in Prague, 1 person with a course for a social care worker, and 2 people with a two-day course on Music Therapy in the Process of Recovery from Mental Illness.
During the project, the association was intensively involved in organizing educational activities. They implemented three runs of the crash course to help through their own experience with mental illness (the socalled “co”-peer course). We trained 39 people with their own experience with mental illness in the Pilsen region.
We have also run one-off educational seminars taught by people with experience with mental illness in collaboration with professionals. These seminars were offered both in Pilsen and in other towns of the region (our successful seminar on adolescent loneliness/hikikomori was requested by our Prague colleagues). In total, we organized 25 educational seminars on mental health topics for the public, as well as for members and supporters of the association.
Peer support
In the span of 3 x 0.2 FTE involved peer workers Petra Vestfálová and Lenka Mirovská in three psychiatric inpatient facilities. In Lnáře and Pilsen we added peer workers Monika Kříženecká, Michaela Taušová and Martina Šilhánková. We managed to convince the hospitals to continue using peers after the end of the project in Mental hospital Lnáře, where the peer consultant Petra Vestfálová is now working full-time and
Monika Krizenecká half-time. In Klatovy, the hospital was satisfied with the peer worker, but they were not able to find funds to employ a peer worker after the project. However, a peer worker from the Ledovec’s mental health centre Klatovy is working in the Klatovy psychiatric ward. The cooperation with the psychiatric facility of the faculty hospital in Pilsen was slowed down by delays in moving the clinic to new premises, where a day-care centre was to be established with the involvement of a peer from our organization.
However, during the first half of 2022, this was achieved, and the clinic even used two peer workers, Michaela Taušová at half-time and Lenka Mirovská, who was always available for one full day during the programme. After the project, one peer is still involved in running the self-help group of the day hospital and the other in visiting the clinic patients in the clubhouse Ledovce (about twice a month), during which he presents the offer of the association.
Self-advocacy and destigmatization
Members of the association participated in community planning of social services in the Pilsen region, and in meetings of regional coordinators with peers and national meetings of the Platform for Associations of People with Experience with Mental Illness at the National Council for Mental Health (NCMH). An important event in which Toseví participated was the three-day national Peer Gathering in Ledovec.
The Toseví association also participated in the regional Days for Mental Health and organized two information campaigns on the issues addressed in the project. In 2022, it contributed to the programme in Pilsen, and in 2023 it offered the programme (thematic meetings and educational seminars) in four other cities of the region.
The project was implemented under the Health Programme in the area of Improving Prevention and Reducing Health Inequalities. Its main objective, according to the application, was to strengthen the role (and voice) of people with their own experience with mental illness in the mental health care system in the Pilsen Region.
The purpose of the project was to support the patient organization Toseví NGO to increase its staff capacity and to provide educational activities for people with their own experience with mental illness.
Furthermore, the purpose was to involve these persons in service planning (self-advocacy) and service implementation (self-help, education, peer work) in the system of care for people with mental illness.
In terms of strengthening the capacity of the organization, we have gradually employed 4 people with lived experience of mental illness on a part-time basis. 33 more people, of whom 24 have experience with mental illness themselves. The indicator staff capacity of the organization is 4.02, which is the first output of activity 1. The project support also enabled the association to purchase a laptop, a multi-function printer and other equipment.
The association has been involved in activities in the region as well as in nationwide peer activities and initiatives of the Ministry of Health of the Czech Republic to change the mental health care system.
In the area of self-help and education, we see the benefits of the project as the greatest:
Within the framework of self-help activities (the second output of Activity 2, indicator number of self-help and destigmatization meetings: 191), 191 meetings of self-help groups were held in five locations in the Pilsen Region. At least 70 unique persons with mental illness were supported in the groups during the project. An additional 10 persons gained experience in facilitating self-help meetings during the project and benefited from the supervision of self-help group facilitators and peer counselors. We consider it a great success that, after the end of the project, all 5 groups are still running, new Moderators are coming on board (Ondřej Lorenc, Anna F. Joseph, Jiřina Pechová, Jana Stříbrská) and the groups are growing with new people with experience with mental illness. Thanks to the experience gained during the project, we managed to raise funds for the necessary rent, the pay for the employees and to pay for further training and supervision for the facilitators of the self-help groups. Twenty meetings of Toseví members and supporters were held to discuss the current needs and direction of the association.
Within the framework of inward training, we managed to train 9 employees of Toseví NGO (first output of activity 2, indicator number of trained persons). All 9 people continue to help through their own experience either professionally or on a volunteer basis. After the end of the project, they continue to run one or more of the following activities: moderation of self-help activities, peering, destigmatization and self-advocacy in the region and at the national level.
During the project, we implemented three runs of a crash course on helping through one''s own experience with mental illness (the so-called “co-peer course”). 39 people with their own experience with mental illness in the Pilsen region were trained. Many of the trained people started cooperation with Toseví NGO or started to organize self-help activities in the CHRC Ledovec Club, others started to participate in self-help and educational activities of the Toseví association. Others use the experience gained on the course to informally help other people, for example, those in the acute phase of mental illness.
In addition, we organized 25 educational seminars on mental health topics. The seminars reached more than 160 unique individuals from the public and people with mental illness. 17 individuals with experience with mental illness gained experience creating and teaching recovery-focused seminars. After the project ended, we committed to a grant from the Ministry of Health to conduct 12 additional training seminars with trainers with their own experience in recovery from mental illness.
An essential activity of the project was the introduction of a peer worker position in three inpatient psychiatric units in the region. With the start of the project, we have gradually involved a peer consultant Petra Vestfálová at Mental health hospital Lnáře and a peer consultant Lenka Mirovská at the psychiatric department of the Klatovy Hospital and at the Psychiatric Clinic of the faculty hospital We also engaged two peer consultants in the form of 0.2 FTE in Mental health hospital Lnáře and one in the psychiatric facility of the faculty hospital in Pilsen.
The association organized 2 information campaigns on the issues addressed in the project plan as part of the national event, Mental Health Days.