Entrenched stigma and a fixed mindset about how people with mental health conditions should be treated are two of the biggest challenges to mental health reform in the WHO European Region. But now, more and more countries are seeing change at the grassroots level that is transforming how people receive and provide mental health support.
Estonia is one of these countries. Since 2020, Estonia has been using the WHO QualityRights tool kit 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 residential care homes catering to people with severe psychosocial and intellectual disabilities.
“When we’re talking about transforming services, we’re talking about transforming relationships,” says Cláudia Braga, a WHO QualityRights trainer with over a decade of experience in service transformation in her home country of Brazil. “You need to consider people with a psychosocial disability as citizens, and you want to promote services that are based on their right to freedom.”
Braga is one of 3 trainers who were in Tallinn in September to refresh Estonian experts’ knowledge of the QualityRights tool kit, a suite of tools developed by WHO for assessing and improving the quality of care in mental health and social care institutions.
These assessments aim to determine whether the facilities adequately support the recovery of people with mental health conditions, while also protecting their fundamental human rights – such as the right to make decisions about their own lives, to have a job, and to get married and have a family. These rights are too often violated because of stigma.
According to Cärolyn-Angelika Liblik, a service coordinator at ENSIB, mental health and social care have historically been built around the mindset of “out of sight, out of mind”. People with mental health conditions tend to be pushed into institutions – which are often separated from communities – for life, where they are forgotten.
Through interviews, document reviews and observation, the trainers usually determine 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 to live independently.
They also check whether 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, WHO conducted assessments of 75 long-term care institutions across 25 countries, including Estonia, and found them to be “far below the standard”. The rights of people staying in these facilities were often violated. For example, staff did not inform users of why they were being given particular treatments, and even physically restrained them to administer medication.
These episodes often occur when a service user is experiencing a mental health crisis, but they can also arise when staff apply a general solution (such as locking all the users’ doors at night) to a specific case (a patient who may want to escape during a mental health crisis).
“But people are not in the middle of a crisis all the time,” says Simon Vasseur-Bacle, a clinical psychologist and QualityRights trainer at the WHO Collaborating Centre for Research and Training in Mental Health in Lille, France. He advises staff to think creatively of how to apply particular solutions in particular cases, while also involving the service users themselves – as well as their families and other professionals – in determining what they want, both during a crisis and in normal life.
Making mental health about the person, not the disease
One problem is that staff in these facilities may see assessors like Liblik as an intrusive presence, potentially adding more work in a setting that is already short-staffed. In their QualityRights training workshop in Estonia, however, both Vasseur-Bacle and Braga emphasized that service transformation is not about adding more work, but about the creative use of existing resources – both human and otherwise – to make the services about the person, not the disease.
They also believe that in most cases, staff are more than willing to change when given the chance. “In my experience, people want to transform services,” says Braga. “They want to work in a good service. All of us want to go home and tell people that on that day we were able to help a user, for example, to go to a specific supermarket to buy pasta. When we use the QualityRights tool kit, we are able to motivate people to think about that.”
In many cases, this change in thinking is sparked by the assessment process itself, if not by the numerous follow-up visits that help services implement the recommendations they make.
Ultimately, Liblik hopes that service providers understand that she and her team are there to improve the lives of service users. “I wouldn't be here and working in the Social Insurance Board if I didn't want to change the world,” she says.
Although ENSIB has so far been the only institution to implement QualityRights assessments in Estonia, they are hoping that will change. Part of the reason they asked WHO to hold the training in Tallinn in September was to recruit others to join their assessments, including family members of service users and the service providers themselves.
Many of the participants committed to improving their knowledge of the tool kit and becoming involved in assessments in the future. As one participant said, “These 2 days have been like an eye-opener. I feel strongly that change and development are possible. I am very curious to see how it will develop further in Estonia.”