I met Claudia Marinetti, director of Mental Health Europe – the largest mental health organisation in Europe – at an event held in the European Parliament on 10 October 2019 to mark the World Mental Health Day and focusing on suicide prevention, the topic of that year’s WMHD. In addition to statistics and approaches to prevention and the economic burden of suicide, the attending experts discussed ways in which human rights violations are closely associated with rising suicide rates.
Dr. Claudia Marinetti is the Director of Mental Health Europe (Brussels), a European non-governmental network-based organisation committed to the promotion of positive mental health, prevention of mental distress, improvement of care, advocacy for social inclusion, and protection of the rights of users and ex-users of mental health services, persons with psychosocial disabilities, their families and carers.
Claudia, could you tell me about MHE as an organisation, about your mission and the key areas of your work?
Mental Health Europe is the largest independent European network focused on mental health. When I say independent, it means that we are very careful about who we accept funding from. As one of our ethical principles, we refuse any funding from pharmaceutical and related industries. This is very important for us, because it helps us maintain our credibility and avoid any potential conflict of interest.
In Mental Health Europe, we represent uses and ex-uses of mental health services, but also service providers, volunteers, professionals, carers and families affected by mental health problems. Thus, we bring together everybody who is committed to mental health and human rights from the psychosocial perspective.
We represent over 70 organisations in 30 countries across the European region. Things that we do are mainly in areas such as promoting positive mental health, defending the rights of persons with mental ill health, combating stigma and making sure that European policies are mental health friendly.
Human rights are really at the core of Mental Health Europe’s work, because human rights violations can negatively impact mental health and the lives of people living with mental health problems and psychosocial disabilities. In particular, the work of Mental Health Europe is guided by the UN Convention on the Rights of Persons with Disabilities (UNCRPD) which stipulates that persons with disabilities, including those with psychosocial disabilities, must fully enjoy their human rights like any other person.
We monitor the implementation of the UNCRPD by the European Union to make sure that European policies reflect and respect the obligations under the Convention and follow the recommendations received from the Committee on the Rights of Persons with Disabilities in 2015. We also monitor the work of the Council of Europe through our participation in the Conference of International NGOs.
In general, we work to raise awareness of the rights of persons with psychosocial disabilities and to empower users and ex-users of mental health services. We also build capacity to achieve human rights-compliant mental health services and communities.
What challenges has your organisation faced in promoting the values of mental health and human rights?
The challenges are quite varied. We often have to deal with the issues of political will and public opinion and with the fact that some countries still do not have a system in place that supports truly human-rights compliant and community-based mental health services.
There are many obstacles in the way of meaningful progress when it comes to mental health and human rights: laws, misguided policies, limited resources and insufficient use of evidence-based information.
And there is still a lack of understanding of the real value of mental health in society and of the social and other determinants of mental health and even of the rights and mentality of people living with mental health problems and psychosocial disabilities. These factors really limit mental health promotion and protection and have contributed to a predominance of the biomedical approach to treatment, as well as stigma and discrimination.
At Mental Health Europe, we really try to move away from the biomedical model which sees a person as an object to be treated and mental problems as a disease caused purely by biological factors. This approach often supports power struggles and certain commercial interests.
Instead, we promote a psychosocial model that considers every individual as a whole with their social environment, history and relationships and also considers everyone an expert in his or her own life.
As experts, we never doubt the value of promoting the rights of people with psychosocial disabilities. What do you think of the relevance of this topic for broader society?
According to recent data, at least one in six people in the EU – or some 84 million – have mental health problems. In 2015 in Europe, more than 84 thousand people died due to mental health problems and suicide. Worldwide, suicide is responsible for over 800 thousand deaths every year. Plus, there are 25 attempted suicides for each one completed, and even more people have had thoughts of suicide.
When we look at these figures, we begin to realise the huge cost of mental health problems to society – not only in economic terms, of course.
Making sure that people with mental health problems have full access to their rights also means addressing the problems of inequality and social injustice as barriers to creating safe, sustainable and cohesive societies. Therefore, if we want to build this type of society, we really need to take into account the human rights of persons with mental health problems, especially when we realise how many people are affected. I am convinced that promoting respect for the rights of people, particularly young people, with psychosocial disabilities can help us break the circle of disadvantage and social exclusion. There are so many strong points to be made about why we need to work on this.
In 2019, the theme of the World Mental Health Day was suicide prevention. Do you see a link between suicide rates and human rights violations?
There is evidence that negative experience such as involuntary treatment and placement in mental health institutions can lead to trauma and irreversible health damage. This is also the reason why people with mental health problems may avoid or delay contact with the health care system, which can lead to negative health outcomes, life-threatening distress and even suicide attempts.
During our event to mark Human Rights Day on 10 December, I heard some powerful testimonies from people who had experienced involuntary treatment or placement in isolation about what had been done to them and what this meant to them. I remember one person with such experience who said, “Well, they (staff of the mental health clinic – author) tell us that they are forcing treatment on us because they want to prevent us from suicide, but everything else that they do shows that they don’t really care about our lives.”
In Russia, there is a type of mental health institution called “psychoneurological residential facilities” which do not exist in most European countries. These are closed-type institutions where persons with psychosocial disabilities are held in terrible conditions and often exposed to torture, humiliation and other abuse. Have you heard anything about it?
Actually, I do not know enough about the situation in Russia to comment on it. But I know enough about institutions in Europe. We know that these institutions are still dominated by medical professionals and healthcare staff who often insist on maintaining social distance between them and users. These services are based on a biomedical model which reduces individuals to their diagnoses, where people are considered from the perspective of a disease that needs to be fixed but not as subjects having rights.
Institutions often have a negative impact on people’s health and contribute to segregation rather than inclusion in society. At the European level, Mental Health Europe, together with other organisations, has been advocating for a transition from institutional to community-based care. It’s not so much about closing institutions as it is about moving towards a different model of care.
We believe that institutionalisation must end, and we urge the EU, its member states and other countries across Europe to stop funding institutions and to replace them with community-based support. There is evidence that this approach is better, so this must be the way to go.
What do you think is the impact such institutions have on society in general? Should society intervene in any way and by what means?
First, we need to change the way society perceives the concept of mental health and people with mental health problems – then it might be more willing to defend these people’s rights. There is also a body of evidence showing that closed-type facilities are not economically feasible. Economic arguments often work best with policymakers.
There is also a misconception that people with mental health problems may be dangerous to society. But in fact, these people become victims of violence more often than the other way around. This is a kind of stigma that needs to be addressed.
Also, I believe that in addition to advocacy campaigns, civil society organisations should look at international law frameworks which could be used. You might check what instruments your country has signed and ratified. For instance, if it has ratified the UN Convention on the Rights of Persons of Disabilities, one can say, “Well, actually you’ve signed up to this and must live up to it. The situation needs to change.”
And if we want people to listen to us, we should not just say “this needs to change” but explain how. It would be better to say, “This situation needs to change because of our values, because of its importance for society and because of the legal requirements. And this is how it could be done”. You can support it by evidence and examples from other countries – not to copy others but to show what is possible and how it can be achieved.
The reform of psychiatry in Italy that was associated with the adoption of the Law of Basal in 1978 and culminated in 1998 with the dismantling of the entire system of state psychiatric institutions – what is your opinion of the path taken by the Italian psychiatry in the twentieth century and the results achieved? Do you think the Italian reform can serve as an example for other countries?
I think it’s one of the good practices, but perhaps we should not limit ourselves just to this reform. I believe that the reform of the Italian psychiatric system was certainly ground-breaking. It took place at the moment when other countries were far from even thinking this would be possible. And indeed, it sent a signal to other countries that things could be done differently by closing down state institutions.
The Italian experience also showed that reforms of the psychiatric system are a challenging undertaking. Closing down institutions is just one step which should be complemented by sufficiently accessible community-based care. Otherwise, this will make things even worse for people who need care.
Another important thing is that such community-based care settings should not become smaller-scale institutions. Instead, they need to be human rights-based, follow a psychosocial approach, protect, support and empower users, so that these services mean something different for users than the old psychiatric system.
What is your vision of the psychiatry of the future guided by the values of human rights and mental health?
I believe that the psychiatry of the future should begin with seeing each person as a psychosocial whole. It should consider the social determinants of mental health, such as poverty, education, employment, and really start thinking about things that can trigger mental health problems in a person’s life. It should focus on reducing inequalities and it should invest in peer supporters and community health workers. These are just some of the many ways to address the social determinants of mental health. Supporting the mental health service users’ communities is key to enabling full participation of persons with psychosocial disabilities as requested by the UNCPD. Psychiatry could play a key role in making such participation possible.
And it is also essential that persons with lived experience are recognized as experts and are meaningfully involved in policy changes and in service design. This, of course, requires an open-minded psychiatric community.
We have been trying to change the culture of professionals who might be struggling with that and this is something that MHE is going to focus on more and more. There are many psychiatrists that are actually keen to implement systemic change towards a psychosocial approach. However, there is still much to be done in terms of awareness-raising among health professionals and policymakers.
What is your vision of a society of the future guided by the values of human rights and mental health?
There are a lot of arguments why respecting the human rights of people with mental health problems is important. Any of us or someone we know one day could be facing a situation where their rights are at risk. Once people understand it and accept the fact it could happen to anyone, the entire society will be able to contribute to advocacy and awareness-raising among health professionals and policy makers.
This will definitely give a big push to creating a really safe society, based on inclusion and acceptance, where everyone will know that they have that safety network in place and their rights will be respected. This is the foundation of a cohesive and sustainable society.