how Estonia is using a WHO tool to tackle stigma and promote human rights in mental health services

Entrenched stigma and rigid thinking about how people with mental illness should be treated are two of the major challenges to mental health reform in the WHO European Region. But now more and more countries are seeing grassroots changes that are changing the way people receive and provide mental health support.

Estonia is one of these countries. Since 2020, Estonia has been using the WHO QualityRights toolkit to transform its mental health and social care services. To date, the Estonian National Social Insurance Board (ENSIB) has assessed more than 30 facilities ranging from assisted living facilities to nursing homes for people with severe psychosocial and intellectual disabilities.

“When we talk about service transformation, we’re talking about relationship transformation,” says Cláudia Braga, WHO quality rights trainer with over a decade of service transformation experience in her home country of Brazil. “You have to look at people with a psychosocial disability as citizens and you want to promote services based on their right to freedom.”

Braga is one of three trainers who were in Tallinn in September to refresh Estonian experts on the QualityRights Toolkit, a set of tools developed by WHO to assess and improve the quality of care in mental health and social care settings .

These assessments aim to determine whether facilities are adequately supporting the recovery of people with mental illness while protecting their basic human rights – such as the right to make decisions about their own life, to have a job and to marry and have a family . All too often, these rights are violated because of stigma.

According to Carolyn-Angelika Liblik, a service coordinator at ENSIB, mental health and social care have historically been built around the “out of sight, out of mind” mindset. People with mental illness are typically relegated to lifelong institutions that are often disconnected from communities where they are forgotten.

To what extent these facilities offer their users a good standard of living, good physical and mental health care and opportunities to make decisions about their care and live independently, the trainers usually determine through interviews, document reviews and observations.

They also check that service users are free from violence, torture or abuse (including seclusion and restraint), all of which violate the United Nations Convention on the Rights of Persons with Disabilities, ratified in Estonia in 2012. They then make recommendations on how the facility can improve the situation for service users.

Providing mental health care while protecting human rights

In Estonia, as in many countries in the European Region, long-term care institutions remain the main form of care for people with intellectual and psychosocial disabilities.

In 2018, the WHO carried out assessments of 75 long-term care facilities in 25 countries, including Estonia, and found them to be “far below standard”. The rights of the people staying in these facilities were often violated. For example, staff did not inform users why they were being given certain treatments and even physically restrained them to administer medication.

These episodes often occur when a service user is going through a mental health crisis, but they can also occur when staff seek a general resolution (e.g. during a mental health crisis).

“But people are not always in the middle of a crisis,” says Simon Vasseur-Bacle, clinical psychologist and QualityRights trainer at the WHO Collaborating Center for Research and Training in Mental Health in Lille, France. He advises employees to think creatively about how to apply specific solutions in specific cases, while also involving the service users themselves – as well as their families and other professionals – in defining their desires, both in a crisis and in everyday life.

Make mental health about the person, not the disease

One problem is that staff at these facilities may find assessors like Liblik to be an intrusive presence, potentially adding more work to an environment that is already understaffed. However, in their QualityRights training workshop in Estonia, both Vasseur-Bacle and Braga emphasized that transforming services is not about adding more work, but about creatively using existing resources – both human and otherwise – to Tailor services to the person, not the disease.

They also believe that in most cases, employees are more than willing to change if given the chance. “In my experience, people want to transform services,” says Braga. “They want to work in a good service. We all want to go home and tell people that that day, for example, we were able to help a user go to a certain supermarket to buy pasta. By using the QualityRights toolkit, we can motivate people to think about it.”

In many cases, this rethinking is triggered by the assessment process itself, if not by the numerous follow-up visits that help services implement their recommendations.

Ultimately, Liblik hopes service providers will understand that she and her team are there to improve the lives of service users. “I wouldn’t be here and I wouldn’t be working on Social Security if I didn’t want to change the world,” she says.

Although ENSIB has so far been the only institution conducting QualityRights assessments in Estonia, they hope that will change. One of the reasons they asked WHO to hold the training in Tallinn in September was to recruit others to participate in their assessments, including family members of service users and the service providers themselves.

Many of the participants pledged to improve their knowledge of the toolkit and to participate in future assessments. As one participant said: “These 2 days were like an eye opener. I firmly believe that change and development are possible. I’m very excited to see how things will develop in Estonia.”