Expert-meeting on the Right to Mental Health

This blog contains my personal experience of this meeting. It was a closed consultation, but I have permission to write about it on this blog. So this blog is only reflecting my personal interpretation of what was said at this meeting, and cannot be used as an official report.

On 13 and 14 October 2016, I participated in an expert meeting on the Right of Everyone to Mental Health. The meeting took place at the Department of Philosophy of Vilnius University in Lithuania, and was organized by the UN Special Rapporteur on the Right to Health (fully: the UN Special Rapporteur on the Right of Everyone to the Enjoyment of the Highest Attainable Standard of Physical and Mental Health), Mr. Dainius Puras.

On Thursday 13 October 2016, from 12.00 on the doors opened, and participants started arriving at the meeting room at the second floor of the Department of Philosophy of Vilnius University. After a welcome coffee, the International Consultation on the Right of Everyone to Mental Health started at 13.00. There were 22 international participants with a broad variety of backgrounds, and an organizing team.

Karile Levickaite, director of Mental Health Perspectives in Lithuania ( http://perspektyvos.org ) welcomed us, and gave some introductory remarks. Mental Health Perspectives (formerly known as Global Initiative on Psychiatry) is a non-governmental organization established in the year 2000 and working in the field of mental health and human rights.
This international meeting of experts serves to discuss key mental health policy issues, with the United Nations (UN) Special Rapporteur on the right to health professor, Dainius Puras, together with experts from Western and Central Europe will. This discussion will help Professor Puras to prepare a report, which next June will be presented to the UN Human Rights Council. (also see: http://perspektyvos.org/lt/naujienos/vilniuje_prof_d_puras_sudes_pagrindus_savo_ataskaitai_jungtinems_tautoms )

Then we were welcomed by the Rector Magnificus of Vilnius University, who spoke about the connection between science and culture, and how the 400-year old University has been a witness throughout Lithuania’s history, and offered room for innovative thoughts and independent knowledge development during regimes, and therefor symbolic to gaining wisdom and freeing oneself.

Then Prof. Dainius Puras, UN Special Rapporteur on the Rights to Health, briefly elaborated on his objectives and expectations for this meeting, and explained that during the discussion, the mental health situation will be discussed from a human rights perspective, to identify constructive suggestions for the future report on the Right of Everyone to Mental Health.

Then the first session started, titled: The right of everyone to good mental health: the interplay between mental health and its underlying determinants.

Paulius Skruibis of Vilnius University spoke about suicide prevention and determinants, and stressed that in suicidology research the general assumption is that suicide is caused by ‘mental illness’, resulting in narrowed research on biological, pathologized determinants. But in fact, modern research shows that social factors need to be included. For example in Lithuania, important historic events, such as gaining independence or EU-accession, are of influence on the suicide numbers. This shows that a much broader scope, which includes local and social dynamics, is needed in suicide research.

Olga Byelyayeva of the Eurasian Harm Reduction Network (EHRN) spoke about the situation of drug users in the Eurasian region, where they are often labelled as criminals or regarded as ‘mentally ill’, and subjected to terrible acts of torture that are done in the name of drug treatments, such as deprivation of rights, active infliction of pain and suffering and denial of support, even concerning their basic needs. Testimonies reveal absolutely horrific situations, and are invoking discussion in the region. EHRN aims to expose and change these inhumane practices, and advocates for an appropriate standard of support for drug users, with full respect for their human rights.

Vanessa Lacey of TENI, Ireland, spoke about transgender issues in relation to health. Trans people often still face a broad lack of understanding throughout all aspects of life, including access to health care. Non-conforming gender identities are pathologized and diagnosed, which has a negative impact on the general understanding, since it is labelled as an ‘illness’ and not as human variety in equality. Depathologization is needed. However, current health care systems require labelling to get access to services, so the system for access to care and support also has to change.

Then I, Jolijn Santegoeds on behalf of ENUSP, spoke about gender-perspective and mental health care. As an introduction I briefly mentioned my personal experiences of a strong intersection between gender related experiences and mental health, including gender dimensions in the harm done by forced treatments, and the accumulation of oppression. As overall main points I stressed that due to existing patriarchal structures, women, girls and other marginalized gender identities, are at high risk of double and intersectional human rights violations, namely disability-based as well as gender-based violations. They are at high risk of not being heard, being pathologized, and to be subjected to a range of forced interventions and human rights violations, such as deprivation of legal capacity, liberty, property, the right to found a family, and specifically subjection to electroshock-therapy (ECT), forced anticonception and sterilization and institutionalization.

A very interesting discussion arose around the issue of pathologizing human behaviour (as a defect) versus the social model (as part of diversity), and the use and misuse of diagnosis. Themes in the discussion were about stereotyping and ‘classification systems’, and the incompleteness of any diagnosis, and its tension regarding the recognition of universal diversity in identities. About service provision based on diagnosis as a gateway to support, versus realizing a community based continuum of care and support including prevention. About categorisation for budgeting and scientific purposes, versus the transformation to universal support based design of services accessible for everyone. About the social aspects and the role of society in psychosocial disabilities, and the question how healthy our society is, and the need for a cross sectional approach of mental health support. About the social exclusion brought about by diagnosis, and how diagnosis are misused to nullify social interaction and to legitimize abuse and discrimination, and the question whether it’s the system or the practice that is the problem. And about public opinions.

After this very interesting first session, it was time for a coffee break, and then the second and final session of the day started, titled: Addressing change in the normative framework: towards full integration of a human rights framework within existing model of services.

Catalina Devandas-Aguilar, UN Special Rapporteur on the Rights of Persons with Disabilities, spoke about the paradigm shift brought about by the UN Convention on the Rights of Persons with Disabilities (UN CRPD). She emphasized that the UN CRPD requires to abolish all mental health laws that allow for forced interventions, since these laws are discriminatory and result in more harm and exclusion. Even though these laws refer to human rights, it is clear that coercion is not care, but it’s a violation. The UN CRPD emphasizes that all persons with disabilities are entitled to the full enjoyment of all human rights, including liberty, legal capacity and respect and so on, which is a paradigm shift compared to the existing mental health systems. The UN CRPD requires to shift the focus from control to support to overcome barriers for full inclusion and the enjoyment of all human rights. What is needed is change in the existing systems, as well as development of new approaches.

Ramune Mazaliauskiene of the Lithuanian Association of Psychiatrists, spoke about knowledge creation, and referred to a Japanese model that describes stages of knowledge creation. There is qualitative and quantitative knowledge creation, and very often, the mainstream specialists only come up with quantitative knowledge (more of the same), and not with new born innovation, which often comes from pioneers. And while the pioneers are good in developing new knowledge, the mainstream is good in developing standardization, so each has a role to play. When one wants new knowledge, perspectives from the outside are needed. The ideal situation is called “Ba” in Japanese, so she wished us all a good “Ba”.

Then Martin Wayne of the University of Essex presented his analysis of article 12 of the UN Convention on the Rights of Persons with Disabilities (UN CRPD), and in his opinion, article 12.4 does not require abolition of substitute decision-making (as is the opinion of the Essex Autonomy Project, see page 8 of their latest report on Legal Capacity legislation in the UK, see http://autonomy.essex.ac.uk/eap-three-jurisdictions-report ). He argued that the debates on substituted decision making versus supported decision making, were too much polarized, and presented a black-white choice only, which results in an impasse, for which he used the word “autono-mania”, which was not practical according to him. He suggested that the discussion should better focus on safeguards (by which he meant the regulations for existing systems of conventional interventions), and then there would be more support by governments. He also criticized the General Comment on CRPD Article 12, which he found a kind of narrow, selective and single-sided opinion, which was rejective of other opinions, and he argued that there was no evidence-base for the suggested changes.

In the discussion a lot of remarks were made on his (inaccurate) interpretation of article 12.4, which cannot be separated from the rest of article 12, and in fact, article 12 clearly does mean the abolition of substitute decision making, and a shift from control to support for the exercise of the will and preferences of the person. Governments do know that article 12 requires change, which is why they make so many reservations, as they may find it hard to imagine that another approach is possible and better. But in fact, there is huge support for a culture shift in mental health care. For example, the UN-message “Dignity must prevail” which was issued last year on mental health day, 10 October 2015, has the second highest number of retweets in all UN history! (see the message Dignity must prevail here: http://www.ohchr.org/EN/NewsEvents/Pages/DisplayNews.aspx?NewsID=16583&LangID=E ) It is true that the CRPD challenges the conventional assumptions of incapacity, which may be a battle against 2000 years of history. And in fact, it is the “improving safeguards”-approach that is narrow-minded, and its discussions are generally only focussed on procedural formats and time frames, or “humanizing forced interventions”, while the General Comment leads to questioning forced interventions in its essence, and in its social context, which is leading to a debate on real alternatives and new approaches, presenting space to much more diversity of outcome. (Needless to say that respect for each and everyone’s human rights is an “evidence-based” good practice).

The final speaker of the day was Oliver Lewis of MDAC, who also spoke about the “political impasse on article 12”, which he compared to a “Mental Brexit”, where 2 groups are standing opposite to each other, and not open for each other’s opinions, just shouting their own opinion. He identified 2 groups: 1 is the legislators, service providers, courts and so on, who feel the duty to offer “protection” and see the harm done as “collateral damage” or “side effects” and consider that “worth it”. The other group is the group that sees coercion as human rights violation and wants a full and absolute prohibition. And Oliver posed the question: Should it really be an absolute position of no force in any circumstances? Or is there a grey area, and if so, should that be acknowledged? How to get out of the impasse that is not moving?

Also this presentation caused a lot of discussion, and in fact, a similar discussion took place during the drafting process of the UN Convention on the Rights of Persons with Disabilities, so this discussion is very typical for this theme.

In the drafting of the UN CRPD, the issues of involuntary treatment and guardianship have been discussed, and were found to be based in disability-related discrimination, and therefore it is an unacceptable practice. There may be an impasse now, but we also see the discussion is still taking place. And the main issue here is to get through the conflict, just as with other human rights, such as ending slavery or promoting women’s rights. Regarding slavery, some patrons may have been treating their servants quite well, and they may have been loved for that, but still, the prohibition of slavery is an absolute prohibition. And the same strict norm is applied to rape, so when a woman thinks that she may have deserved it, that still doesn’t make it okay, and we condemn the practice. So also when it comes to forced treatments, there is also a strict norm, which should be respected. And we should also remember that, for example, regarding persons with Down syndrome the general assumption was that they would be incapable of exercising choice, learning, or living independently, and we see the opposite being proven nowadays.

I also stressed that, eventually, all stakeholders have the same goal (the best care), and my experiences as an activist in the Netherlands show that it is possible to find common grounds and to cooperate with both groups. For example, recently, a progressive group of Dutch mental health care professionals have issued a manifest in which they declare to ban the seclusion cell by 2020, and about 14 institutions have officially signed it. It is an example of how a user protest can lead to changes within professional systems, and it is not necessarily polarized. It is possible to overcome the impasse, and to start joint projects.

It was a very interesting discussion, and so the conference closed a bit later than planned.
An hour later, we were expected in a restaurant called Aula for a joint dinner together. It was a nice evening, with nice people and nice conversations. I stayed for a while after the dinner, and then I walked to my hotel, wrote a small blog and did some emails, and then went to bed.

*

Friday 14 October 2016, was the second day of the expert meeting on the Right of Everyone to Mental Health, organized by the UN Special Rapporteur on the Right to Health, at the Department of Philosophy of Vilnius University in Lithuania. The meeting started at 9 AM with a word of welcome by Karile Levickaite, and prof. Dainius Puras.

The first session was called: Paradigm change: practical challenges in reshaping existing models of mental health care services.

The first speaker was Michelle Funk of WHO. She spoke about the global context of the paradigm shift, and highlighted a number of barriers, such as mind-sets on the assumed “helpfulness” of the existing system of forced interventions, as well as a feeling of “helplessness” due to a lack of alternatives, and a fear of being held accountable for any adverse events (based on false assumptions that dangerousness and mental health problems show a causal link, there is no evidence that supports that assumption. In fact, persons with mental health problems are far more often a victim than a perpetrator of crime. So mental health problems and dangerousness are distinct from each other, but they can coexist). Another barrier is formed by the negative stereotypes of incapacity, leading to mechanisms of control instead of recovery, empowerment and inclusion. The social focus is hugely insufficient. The biomedical model has formed a strong focus on chemical-imbalance rhetorics, which in fact enables to omit and neglect social factors, and causes investments in the wrong models. The WHO Quality Rights Project aims to link up all stakeholders on human rights and mental health care, and aims to support the implementation of the UN Convention on the Rights of Persons with Disabilities in mental health care in practice.

Jan Pfeifer of Mental Health Europe, spoke about institutionalization and de-institutionalization in Europe, and referred to the MHE-report Mapping Exclusion (see http://www.mhe-sme.org/policy/mapping-exclusion/ ). He highlighted the fundamental difference between the paternalistic model of care, which is unfortunately in place in many countries, and social models of care, such as in Trieste, where a transformation to community based care has been made. He highlighted a number of “traps” concerning de-institutionalization, such as assuming that it means to humanize existing models, while it in fact requires new approaches. Another risk is to close institutions without providing alternatives, which means the problem changes, but it isn’t solved. Or to build community support systems without de-institutionalization, or a new system with the same old culture. What is needed is a change in thinking, and in practices, and in the system, from rigid to human.

Egle Sumskiene of Vilnius University, presented an extensive Lithuanian study on various expenses related to mental health problems, to create a full financial overview in order to identify the economic effectiveness of certain interventions, such as solely psycho-pharmaceutical therapy (pills), or a combination with other therapies. (research shows that nobody in this Lithuanian study receives only therapy without pills).

Jonas Ruskus, UN CRPD Committee member, emphasized that all persons are born free and equal, and have the right to equal recognition before the law. The UN CRPD stresses that also persons with disabilities have this right. Yet, most countries still have national laws in place which allow for deprivation of rights based on assumed “incapacity”. General Comment no1 on CRPD Article 12 further explains that substitute decision making needs to be abolished. Half a step is not progress, but divide from the goal. He also linked the UN CRPD to the practice of social work, which is in itself a profession that shows an overlap with many CRPD rights, and enables people to feel “real human among other humans”.

The discussion was not as intense as yesterday. It was about continued investments in the inherited systems (often by default), the power of hospitals and pharma, prison-like experiences in hospitals, the power of human stories, the assumed liability for events in the community in contrast with the lack of liability for harm done in the name of/ or inside mental health care practices, and European structures, funds and directives.

Then we had a coffee break, a short one, since we were already behind on schedule.
Session 2 was on: Investing in mental health services: identifying rights-compliant and evidence-based good practices.

Valentine Hristakeva of the Global Initiative on Psychiatry, Bulgaria, spoke about a new model and practice of supported decision-making, facilitated by an NGO initiative to support persons with severe psychosocial disabilities in Bulgaria, since they often live in very isolated, poor and inhuman conditions, and lack any form of support, and in Bulgarian institutions a lot of human rights violations are taking place. The NGO focusses on providing support, and sees trust, contact and a good relation as key aspects. They never question anyone’s decision, and support the person in their wishes and their individual life plans, including by diverse forms of support and social services. Half of the staff are persons with psychosocial disabilities themselves, which has positive effects in the relation process with users. The NGO, which supports 100 users, does not use any forced interventions, since their focus is always on mediation. The project is still in pilot phase, meaning that every step is discussed and reflected upon. It is a very promising practice.

Ieva Leimane from ZELDA, Latvia spoke about a supported decision-making project in Latvia, which focusses on persons with very severe and complex psychosocial disabilities, currently they have 28 users. The NGO that runs this project, is originally an advocacy organization, and it was a big step for them to open another department in the organization, and to start providing services, simply because the need for these services is so high that something had to be done. Community based service is not a fixed box, but it is about individual and complex situations that need unique solutions, and often there are many barriers in the community, such as rejection, sometimes also by service providers and family. Sometimes people question why so much money should go into 1 person, but then they explain how the users have suffered from many years of utter neglect, and how bad the situation was before, and then most people grow understanding. Dealing with complex challenges is in fact the main job overall, and the NGO actually manages to support people into a dignified life that exceeds any other previous assumptions. This is another promising project.

Maths Jesperson presented several models of good practice, such as the model of the Personal Ombudsman, which he has developed in Skone, Sweden (see http://zeroproject.org/policy/sweden-2/ ). And he also highlighted the Open Dialogue model from Lapland (see http://open-dialogue.net/ ), and the project in Trieste (see http://www.triestesalutementale.it/english/index.htm ). Also, there are several networks that foster the exchange of new models, such as the International Mental Health Collaboration Network, IMHCN (http://www.imhcn.org/ ) and the International Network Towards Alternatives and Recovery, INTAR (http://intar.org/ ). Maths also stressed that he was appalled that there still is no action plan to address the well-known shortened lifespan of persons who use psychiatric medication, who may live 25 years shorter due to the psychiatric medication. This is a form of genocide, and it must be stopped. So why is there no action plan!

The next presentation was by Marianne Kastrup of the European Psychiatric Association, who was rescheduled from the next session to this session. She explained that within EPA it is recognized that torture and ill-treatment is not acceptable, but there is discussion about what torture and ill-treatment is. Within EPA there are also concerns about overdiagnosing and overmedicating (such as ADHD for children), as well as arguable labelling of transgender or the new “orthorexia” (when one only wants healthy food). There is an Ethics-Committee in EPA, and also Guidance papers are issued, such as recently on “the image of psychiatry”, and the double role of doing good versus offering protection.

A short discussion followed, mainly about ethics and roles of psychiatric professionals, and for example, how to foster further support for the recovery approach. And about tolerance in the community.

During the discussion, the North-West of Europe was idealized, which cause me to respond, emphasizing that the North-West is the root of the old paradigm, which is still persistently present, although also some good initiatives exist every here and there, however, there is reason to be careful and critically analyse North-West Europe based solutions before copying any of these.

I had already mentioned my project with Family Group Conferencing (Eindhovens Model) as a side note in yesterday’s discussion, so I didn’t bring it up during this discussion, but you can read more about it here: http://punkertje.waarbenjij.nu/reisverslag/4567654/presentation-text-on-eindhoven-model-cosp or onmy website http://www.mindrights.org

Then we had a nice lunch which was served in the cafeteria down the hallway. After lunch, everyone went quickly back in the room.

The third and final session of the day was on: Role of stakeholders (policy makers, professional groups, users of services) in promotion of mental health care services based on human rights and evidence.

Judith Klein of the Open Society - Mental Health Initiative (who has switched places with Marianne Kastrup) spoke with us through Skype. She highlighted that de-institutionalization is really a human rights issue. She showed a video with testimonies and experiences, which showed that with support for living in the community, the quality of life of persons with psychosocial disabilities is much better than in institutions. They went from surviving to really living. De-institutionalization is not about just changing locations of the person, but about fundamental changes in attitudes and services. In institutions, there is only a regime, with hardly any free choice, or only in the margins, while de-institutionalization means recognition that persons with psychosocial disabilities have the same wishes in life as others, and should be supported to live in the community. The barriers can, and need to be broken, and action is needed now.

Then Alva Finn of Mental Health Europe emphasized that we are all in this together, and the role of each stakeholder is crucial. She elaborated on a variety of stakeholder roles, such as policy makers for guidance and budgets, professional health care workers to develop new approaches, and experts with lived experience to push and steer the change, and she stressed the need for co-production. Her speech was covering a range of practical key points for main stakeholder roles, on the level of practice. I liked her analysis.

Then I, Jolijn Santegoeds, was the last speaker of the session. I questioned the definition of “evidence” in mental health care, since the statistical research is not sensitive to social attitudes, relations, or local dynamics. And also the biomedical model has a narrow view in itself, and disconnects behaviour from the human dimension. And the so-called “Random Control Trials” are based on the idea that everyone is the same, which is inappropriate for mental health care. So another form of evidence and research is needed, which should unfold around experience. In industrial settings, complaints and feedback steer quality developments. But unfortunately, complaints and feedback in mental health care are generally not taken serious, nor part of a learning cycle. It is needed to (re)define the goals of mental health care, redefine which practices contribute to this goal, and to install a new system of research and development and evaluation. There is no blueprint on how to make change, and you have to work with what is there. In the Netherlands our allies happen to be nurses and other health care workers, rather than lawyers or politicians, but maybe it is different in other countries. A general point is that during mental health crisis situations, it is the coping capacity that has been exhausted, and there is a need for knowledge on alternatives. If there are no alternatives, the default answer will be institutionalization. And if de-institutionalization takes place without properly arranging community based support, other tragedies may happen, as we see in South Africa, where persons with psychosocial disabilities literally die from neglect after de-institutionalization, up to a shocking number of 1 every 3 days… (see: Esidimeni Campaign http://annemarierobb.wixsite.com/esidimenicampaign ). In this way, there will only arise resistance to de-institutionalization, which is pushing persons with psychosocial disabilities back into the margins again, in horrible institutions, in a different segregated life, away from normal life… I also stressed that one should not forget the power of positivity. Real care is a beautiful thing, that gives a warm feeling, and is nice, while ill-treatment is painful and hard to deal with. Once new initiatives start bringing new positive energy, it may serve as a magnet.

The discussion was mainly about the definition of evidence in mental health care, the narrowness of the biomedical research, the need for a broad notion of diversity, to move from control to support, and the definition of institution (not as a building but as a culture), which are all challenging steps.
It has been a quite Eurocentric meeting, and Catalina Devandas stressed again that idealizing the North-West of Europe may actually make things worse than before. It is much more interesting to look at countries without extensive mental health systems, to identify non-medicalized good practices, which exist and can help to make the paradigm change.

After some final reflections by prof. Dainius Puras, who thanked us all for our contributions, which he had found very helpful, the meeting closed around 15.45.

It had been a very interesting and inspiring meeting. I am happy and proud that I have been part of this.