Gesine Heetderks and Michael Huppertz
Mindful Change Foundation
From April 1 to 11, 2019, we travelled to Côte d’Ivoire to gain an insight into how the SAMENTACOM project, funded by our foundation, has progressed and how it can be developed. SAMENTACOM aims to implement a social-psychiatric-oriented care for people with mental illnesses and epilepsy. The project was initiated during our stay in Côte d’Ivoire in January 2018 — triggered by the disturbing reports of mentally ill people living without medical help under the most degrading conditions in the poor countries of Africa and Asia — and has started work since then.
Our current visit was carefully prepared and organized by the project leader, the Ivorian psychiatrist Prof. Koua from the University of Bouaké, and his staff. In addition to Prof. Koua, the team in charge includes another psychiatrist, two psychiatrists still in training, a sociologist, an Agent de Santé (staff member in one of the health centers), a pharmacologist, a lawyer, two geographers and an assistant. We were involved in the work on all the construction sites relevant to the project. We participated in several discussions with staff, but also with patients and relatives, and suggestions from our side regarding the ongoing work and further development of the project were welcomed. Critical questions were also welcome.
The main topics of our trip were:
1. The development of psychiatric and neurological work in the existing health centers;
2. Further training on psychosocial aspects of the treatment and further development of supervision;
3. Cooperation with the Camps de Prière –Prayer camps (CdP);
4. Cooperation with the national pharmaceutical authority to ensure the supply of medicine
1. The development of psychiatric and neurological work in existing health centers.
In Côte d’Ivoire, there is nationwide care with small, simple health centers that are responsible for all health issues, but generally do not treat psychiatric or epileptic patients. Therefore, the aim is to enable these health centers to take care of these patients. SAMENTACOM has therefore initiated a pilot project in 10 health centers, mostly in the rural area of Bouaké. So far, it has been investigated what psychiatric help is already available there, psychiatric consultation hours have been set up and regular supervision by Prof. Koua’s staff in form of joint local treatments has begun. One of the main problems of the project was to find the patients in the villages and prayer camps, to make them visible and to enable them to receive treatment. In the future, this must be one of the tasks of the Agents de Santé, who will be trained as part of the project.
The drug treatment of psychoses and epilepsies represents an indispensable progress. The need for additional psychosocial training for those who work with the mentally ill has become clear, not only so that they can better respond to their mental situation and social environment, but also so that they themselves can cope better with difficulties in dealing with the mentally ill. We were impressed by a meeting with about 50 Catholic sisters, some of whom are in charge of a health post and some of whom have received psychiatric training from Prof. Koua. They seemed highly motivated, and at the same time they talked about many situations with mentally ill people, in which they felt helpless and sometimes scared. The desire for monthly supervision was expressed and it became clear that they needed a lot of support.
2. Training on psychosocial aspects of treatment and further development of supervision
We experienced supervision in one of the ten health posts of the project. One of the nurses of this post had taken part in the basic psychiatric training with Prof. Koua. The consultation was conducted by this nurse together with a psychiatrist from the team. This will take place once a month in the future. During the consultation most patients had epilepsy, some had relapses because they had stopped taking their medication, and others were treated for the first time. One patient had been chained up three times, treated once with antipsychotic medication and then taken to a prayer camp during another psychotic episode.
It was noticeable that the nurse turned more to the relatives with their questions than to the patients themselves. The tone was short and concise, there was little recognizable sympathy. There were frequent interruptions due to mobile phone calls. The patients behaved rather submissively. — Other employees take a lot of time talking to patients and their relatives, show a lot of patience, but of course it takes less time when you talk to the relatives instead of the patients. Our impression is that decisions are not made or even negotiated with the patient.
Parallel to the consultation, Prof. Koua, together with an employee, conducted an initial training course for the Agents de Santé there on how to recognize and deal with mentally and epileptically ill people. Their task will be to go to the villages and encourage the sick to come to the clinic, talk to the families and stay in contact with the sick during the treatment. This training is an important part of our project. There were 8 Agents de Santé present, including a woman. The Agents were very involved, they described problem cases. The message from Prof. Koua was very clear: in the future they should also be given the task to report suspicious cases to their center, but they do not have to make a diagnosis and of course they should not carry out any treatment. Rather, it is a matter of establishing contact between the patients and their villages and the health centers and accompanying them. They know all the patients in the villages and in the prayer camps.
With regard to the psychological training and further education of the SAMENTACOM team in dealing with mentally ill people, we have succeeded in recruiting a clinical psychologist from Abidjan. The idea is that together with Prof. Koua he will produce a brochure in which the important elements of the psychological treatment will be explained. The team of Prof. Koua can then take over the training in the health posts.
3. Cooperation with the Camps de Prière (CdP) prayer camps
The prayer camps are villages with spiritual offerings, which usually accept mentally and epileptically ill people against payment, mostly for long periods of time, even against the will of the people concerned, at the request of their relatives. Mental illnesses and epilepsy are religiously interpreted in Africa often as possession by evil spirits, and so the treatment consists of prayers and sometimes also torture to which the sick are subjected in order to drive the evil spirits out of them. They are often chained to trees in the open air, sometimes for years, so that they cannot run away and cause any damage. The path of the patients usually leads via healers who practice traditional medicine to the prayer camps, which are mostly evangelically oriented, with traditional religious elements playing a more or less important role. In view of the helplessness of many relatives in dealing with mental illnesses, the accommodation of the sick in prayer camps often seems to them to be the only possible solution. The Camps de Prière are therefore of central importance, and the development of constructive cooperation with them, if successful, is an opportunity for the development of psychiatric care in West Africa.
So far, there is no overview of how many Camps de Prière there are and where they are located. They are not registered anywhere, and anyone can set up such a camp. The aim must therefore be a national survey in this matter. To this end, SAMENTACOM conducted a pilot survey in the Bouaké area and presented it in a very successful brochure. 71 prayer camps were recorded and mapped, 40 of which were visited. If this is extrapolated for Côte d’Ivoire, there should be around 2000 prayer camps in this country.
According to the pilot survey, the vast majority of the prayer camps are willing to cooperate. We have visited several prayer camps, including one we visited last year. However, after a very friendly reception it turned out that the religious leaders had decided to pray only with the patients and not to allow any more medical treatment by the SAMENTACOM team. In a conversation with the village elders, Prof. Koua urged everyone to allow the treatment; otherwise they would come into conflict with the law. We saw three patients chained to the camp — one of whom we had seen chained there a year ago — living there without psychiatric help. One can only speculate about the director’s motives for refusing to cooperate. In any case, perhaps a more regular contact and regular talks could have prevented such a break — also with the clear message that detaining patients and refusing to help them at the same time is a violation of the law and a violation of human rights that will not be tolerated. However, the legal situation and, in particular, the human rights dimension of such action appears to be generally rather unknown. For future conflicts of this kind with prayer camps, it is therefore important to find out about the legal basis and also to sensitize the relevant police authorities to this problem.
However, it has also become clear how important it is to support patients and their relatives in learning to articulate and represent their own interests. In a village we showed the impressive film: “La Maladie du demon” by Judith Kugler. A suggestion made by Prof. Koua at this meeting with patients and their relatives to found a self-help group and to invite the local authorities and the police to participate, met with a broad response. The founding meeting was scheduled for the end of May.
4. Cooperation with the national pharmacy authority to ensure the supply of medicines
Together with Prof. Koua we had a meeting with representatives of the National Pharmacy Authority for the Public Sector (NPSP). The aim was to reach an agreement with the NPSP that would lead them to order, pay for and deliver the medicines to the centers involved in our project (and possibly for more centers in the future) at a lower cost than in the pharmacies. So far, we have sent medicines to Côte d’Ivoire in collaboration with Medeor. Medeor is a German NGO that delivers medication to poor countries at low cost.
At the meeting it became clear that the NPSP only wanted to get involved if the quantity of drugs needed was so large that it was worth the effort. To this end, the NPSP wants to collect data on the drugs used and those needed in the future. In the meantime, it has been decided that this data collection by the NPSP will soon be carried out in all known centers that treat patients with epilepsy and severe mental illnesses in relevant numbers, and that on this basis the drugs will then be procured by the NPSP itself in the future.
Results and tasks:
1. We have seen the balance sheet for 2018/19 (until 31.3.2019), it is ok. The planning for 2019/20 is outlined, a detailed planning will follow.
2. The payments of the patients for medicines supplied by us or Medeor will be registered and returned to the project. They are to be used to finance any further medication that may be necessary and also for the work of the centers, e.g. to finance motorcycles or agents’ salaries.
3. 20 Agents de Santé will be specially trained for mentally and epileptically ill people. Of these, 10 will be financed by us in the future (2 each for 5 centers). We are also willing to pay the material costs for the agents. The main problem of the project will still be to find the patients in the villages and prayer camps and to enable them to receive treatment. This function can and must mainly be fulfilled by the agents.
4. A monthly supervision by the psychiatrists of the project is planned
5. For the time being no further central training courses will be carried out because sufficient nurses have already been trained for this phase of the project. Instead, there will be decentralized training courses on site in the health centers and training courses for CdP staff. The idea is to continue using the prayer camps, at least in part, by upgrading them as real sanatoriums with controls and conditions. However, it remains to be seen how many CdPs are prepared to do so and understand the therapeutic concepts. Where possible, police training could and should also be offered.
6. In addition, a guide for psychological training should be drawn up by the psychologist and Prof. Koua, which should first be binding for the SAMENTACOM team and then for the staff in the health centers.
7. We will support a National Enquête on the Camps de Prière. It will be carried out by the end of the year. The University of Bouaké is the supporting body. Prof. Koua submits the application and makes the calculation. We take care of the financing, be it through us and/or through cooperating foundations.
8. Medical therapy will be continued in a more differentiated form. More attention should be paid to side effects, and more attention should also be paid to compliance, including that of relatives and the prayer camps.
9. Data on drug demand in the centers will be collected by the NPSP. It is planned that the NPSP will then, as with all other diseases, take over the supply of medicines for mentally and epileptically ill patients.
10. The legal situation regarding human rights violations must become clearer. In this respect, we must become more aware of national law.
11. We have been recommended to negotiate a convention between our Foundation and the Ivorian State; our recognition as an NGO in Côte d’Ivoire can facilitate our work in this country with the authorities. This is in preparation.
12. The number of centers in the project is not yet to be increased, but rather the quality and quantity of work in the centers is to be improved. We may then gradually add individual centers, if possible those that are already at work and possibly also religiously oriented, even if we agree that this is a model for the whole country and that sooner or later it should and can be extended nationwide.
Human rights violations against people with mental illness, epilepsy and disability – Amnesty International’s Action Network for Health Professions organized an international symposium in Kassel
On 16.02.2019 a symposium on human rights violations against people with mental illness, epilepsy and mental disability took place in the Gießhaus of the University of Kassel. The conference was organized by Aktionsnetz Heilberufe, financed by Amnesty International and simultaneously translated into two languages (English and German). Members of Amnesty International, representatives of NGOs and other interested parties were present, many from therapeutic professions.
La maladie du demon — disease of demons
On the evening before the conference, director Lilith Kugler took the audience to Burkina Faso with her award-winning debut work and presented the situation of people with mental or epileptic diseases. People suffering from psychosis are hidden in sheds for their own protection and that of the community and are tied to trees there or in nature. In some cases, prayer camps are used which are located far outside the community, are only known in the immediate vicinity and are not subject to any controls. There they are provided with food by their relatives or, if they do not visit them, by members of the camp. The “treatment” usually takes place exclusively with prayers in order to expel the evil spirits. There is no psychiatric supply of medication. The sick often spend years under a tree and the film shows an example of a person digging deeper and deeper into the earth and others talking to themselves or even silencing completely. Sensitively and without any pathos, Lilith Kugler, accompanied by a parish priest, Guitanga Tankpari, presents the situation and the background for the experience and action of the local people. The pastor visits some patients and tries to free them from their chains and to find a place for them in their communities again. The Christian pastor tries to combine the traditional culture with human accompaniment and the achievements of medicine in order to bring people back to community and recovery. Medical care is provided by a psychiatric nurse, Timothée Tindano, who travels from far away and has an outpatient consultation two days a month. The supply of medication is a major problem.
Also affected persons and the consequences of the illness for them and their families are presented. The situation of the helpers in the local aid project is also addressed. The diseases are interpreted in the local tradition as an expression of obsession, which leads to the fact that the demons must be driven out or tamed. The demons can also jump over to other people and so the helpers are sometimes also suspected of being infected by the demons. But the film also shows how elementary care can be developed with simple means. This care is currently being expanded with the help of two German NGOs.
The director was present during the following discussion and answered the numerous questions. Meanwhile she is back in Burkina Faso, showing her film there — also to the people who participate in the film — and she and we are looking forward to the resonance there. The film can be requested for screenings in cinemas and events in order to reach a broader public for the topic in other countries as well.
Amnesty International’s Position on Mental Health and Human Rights. Starting point and questions
Michael Huppertz, psychiatrist, psychotherapist, sociologist and member of the Aktionsnetz Heilberufe, introduced in his introductory lecture the topic of long hidden human rights violations against people with mental and epileptic diseases in countries without relevant psychiatric care. He spoke from a human rights perspective about the problems that arise on the way to improving their situation. If in the past decades there was protest against abuse of mentally ill people, it was in connection with criticism of arbitrary and violent treatment within psychiatric institutions. But many more people outside psychiatric institutions than within them are deprived of their basic rights. This is simply due to the fact that there are around 1.5 million beds in psychiatric institutions worldwide, including homes, but at least 200 times as many severely mentally ill people in poor countries who have no access to psychiatric treatment. It is only since about 10 years that the problem, which has been known to experts for a long time, has been brought to the public by investigative journalists. Human rights organizations, including Amnesty International, have also paid little attention to the situation of this large part of the population to this day. So it is also about an inclusion of this group in the human rights movement. Using the development of Amnesty International as an example, he explained how the organization initially devoted itself to political prisoners and civil and political rights, and later on generally campaigned for the abolition of torture and the death penalty. In 2001, the mandate was extended to the protection of all human rights.
Sometimes, but never comprehensively, the situation of mentally ill and disabled people was taken into account. Recently, however, the issue seems to be gaining more attention at the international level, which has been promoted by important international conventions. Various problems have arisen with regard to cooperation with regional and state actors, the plausibility of the modern concept of human rights in rural regions, the possibilities of NGOs to influence international negotiations and national health policy. Especially NGOs that are practically active on the ground have to bear in mind that they do not contribute to the mistakes of Western psychiatry being repeated in the development of psychiatric care in developing countries. In particular, the establishment of large, separate psychiatric institutions should be rejected because it is inefficient and expensive and because such institutions are particularly vulnerable to human rights violations under precarious conditions. In addition, there is a danger that the governments of the countries concerned, which generally spend very little or nothing on mental health, will be relieved of responsibility for the issue of mental health. In the efficient and affordable development of psychiatric care within general decentralized and outpatient health care, on the other hand, one can refer to the international expertise of the WHO, for example. At the end, Michael Huppertz formulated numerous questions for the participants of the conference, the answers to which could be important for a possible future engagement of Amnesty International.
Global mental health and human rights — an overview of the current situation
Wolfgang Krahl of the International Network for Development Cooperation in the Field of Mental Health e.V., psychiatrist and forensic scientist, who has been active for decades in various emerging and developing countries in research, education and cooperation projects, impressively demonstrated, based on the Declaration of Human Rights, that mental health has long been neglected in the realization of these human rights. Families, especially in poor countries, are the only supporters of mentally ill people who, for their own protection and that of others, resort to numerous human rights violations, for example by chaining their relatives to chains and locking them away. The best anti-Stigmaprogramm is a good treatment and rehabilitation! It also takes the burden off the affected families, relieves them for other tasks and activities and is a concrete development aid. According to the WHO’s catalogue of objectives, this includes good initial care for mentally ill people right into the local communities, the provision of psychotropic drugs, the training of mental health experts, who do not have to be psychiatrists, and then also educational work and psychoeducation. This requires state implementation and networking of various sectors, monitoring and further research. He pointed out that in Europe, too, the development of psychiatry was a long process that began in the 18th century and led to the first liberations of the mentally ill from their shackles. Wolfgang Krahl also recalled the most comprehensive and organized human rights violations in Germany between 1933–1945. Within the framework of the T4 program, 200,000 sick people were systematically murdered, many of them forcibly sterilized, with the significant participation of psychiatrists and nursing staff.
Wolfgang Krahl presented how much money states spend on psychiatric care and how the gap between countries with high and low per capita incomes diverges. Low and lower middle income countries usually spend less than 1% of their low health budgets, sometimes nothing at all, on the treatment of these diseases. As a result, billions of people would have no access to psychiatric care. After infectious diseases and injuries, mental illnesses are the most common diseases. He showed what drastic consequences this can have for those affected. As a rule, traditional healers are the first port of call for those affected and their families. Traditional healing methods could also be sometimes successful for mild forms of depression, dependency diseases and neurotic symptoms. In the case of severe depression, schizophrenia, bipolar psychoses and epilepsy, on the other hand, psychiatric treatments, including psychotropic drugs and antiepileptic drugs, would have to be used not too late.
Mental health and human rights in Côte d’Ivoire
Nathalie Kouakou from Amnesty International Côte d’Ivoire spoke about the situation in her country, where she has been campaigning for several years for the implementation of human rights standards in the health system. Especially mentally ill people are impaired in the perception and defence of their rights and are therefore particularly predestined to become victims of human rights violations. Although the WHO defines the right to mental health as a central component of well-being, those affected by mental illness, epilepsy or reduced intelligence are still often stigmatised, excluded from education, political debates, elections, starting a family, etc. The WHO also defines the right to mental health as a central element of well-being. In Côte d’Ivoire, the whole issue of the life situation of the mentally ill is marginalised.
Nathalie Kouakou presented the UN Convention on the Rights of Persons with Disabilities and the Mental Health Action Plan, which call for social improvements for people affected beyond medical treatment and aim to break down barriers to integration. They want to draw the attention of those responsible and decision-makers, encourage them and point out ways in which they can help to implement appropriate guidelines and protect and guarantee the rights of those affected. In particular, however, the Convention aims at the housing, living and treatment situation, the standards of which must meet today’s increased knowledge. A different picture of mental illness should also be brought into society, for example through improved education of the population. Degrading treatment and accommodation should also be punished, as it should be possible for those affected to complain about it. The government should provide instruments to strengthen patients and their families, for example in the form of associations and self-help groups. Large psychiatric institutions in large cities should be replaced by psychosocial and medical care closer to home. In order to guarantee all of this, government offices for coordination and planning would have to be created in the administration. The African Union had also largely joined the postulates of the WHO, but there was still a lack of visibility of the problem in the country and a lack of commitment on the part of the Ministry of Health. The precarious situation of the lacking resources on the one hand and the little committed approach to the implementation of the guidelines on the other hand promotes the continuation of the traditional practices of the religious-cultural understanding of mental impairments with the danger of the continued mistreatment, disregard and exclusion of the affected persons. This also includes sexual abuse within the framework of magical thinking as well as kidnappings and the removal of organs.
Despite the otherwise dynamic process in the development of the country, the magical thinking of guilt, magic and obsession prevails here. In addition to the already weak medical care in the country, which was still affected by the military coup of 1999, various crises and the civil war of 2002–2011, there is an increased incidence of trauma disorder. Psychiatric care is scarce, and only 25% of health districts have any form of psychiatric care at all. On the other hand, Côte d’Ivoire has a new constitution in 2016 which stipulates that all people with disabilities must be protected from discrimination and that no one must be disadvantaged because of their mental or physical condition.
In her concluding demands, Nathalie Kouakou underlined the need for further research into the epidemiology, sociological data and legal status of the diseases in question in Côte d’Ivoire, improved accessibility of the initial contact points in the municipalities, also for mental illnesses, for investment in training for specialist staff, but also for volunteers in the village structures, in order to build up a good support network and educational work.
From West Africa to Southeast Asia: Transforming access to mental health care through WHO Quality Rights and CBM’s mental health work
Carmen Valle works as a consultant for mental health projects of the Christoffel-Blinden-Mission (cbm), in particular with regard to human rights education, in various countries in Africa and Asia. She followed her organization’s experience and solution models. She described how it can be possible to create basic networks on the ground, to support decision-makers and people in the care of people with disabilities. Cbm relies among other things on so-called peer groups, i.e. on people who are experienced in life and enjoy the respect of the community and at the same time are open-minded for the implementation of social psychiatric care in the communities and often have a practical therapeutic effect. She impressively presented a well thought-out concept at the various levels of how the countries could continue to maintain and develop the system independently without the support of NGOs. Mental health care and consideration of the situation of mentally ill, stigmatized people with epilepsy and mental impairment should be integrated into the overall concept of development work, for example in educational projects in schools and kindergartens. The idea of inclusion can also be introduced at an early stage here, as well as at parent and community meetings. This also strengthens awareness of the particular vulnerability of those affected to assault and abuse and thus social control, which can serve as protection. The concept of their organization is to provide emergency aid in threshold and developing countries, for example after earthquakes, tsunamis, etc., in addition to the so-called basic needs, and to focus separately on mental health and local work. Worldwide, on-the-spot trainers are trained in first aid for first aid after traumatization according to WHO guidelines.
The situation of traumatized people in Liberia
Susanne Grosse, social scientist at the University of Kassel, as hostess of the event in the Gießhaus of the University of Kassel not only ensured a pleasant conference atmosphere, but in view of her forthcoming research stay in Liberia she not only reported on the similarly disastrous situation of those affected there with vivid film and pictorial material, but also made it clear on the basis of the standards of care in Germany that we ourselves have not been far away from poor care for so long. The psychiatric enquiries and visitor commissions had provided for more transparency and standards, but needed constant improvement. It is precisely the people affected who find it difficult to stand up for their rights. In projects in Liberia, people are trained for psychosocial support, especially for the numerous traumatized people in the country. Thousands of former recruited child soldiers have now grown up and have families of their own, but often carry trauma sequel disorders with them — with serious consequences for themselves and society.
The practical significance of international human rights conventions for the development of psychiatric care
Margret Osterfeld, retired psychiatrist and committed to Aktion Psychisch Kranke e.V., was not only a committed critic at previous lectures, but also spoke about her work at the UN Subcommittee on the Prevention of Torture, in the framework of which teams regularly visit care institutions in various countries and draw up reports on the extent to which corresponding standards of care are observed or disregarded and improved. These teams usually have access to all mental health facilities and prepare reports on the human rights situation in these facilities. If they do not get free access, they stop working. The reports are forwarded to the competent authorities and proposals are made to improve the situation. A publication beyond that is aimed at, but the organization renounces it, if the addressed governments do not agree, in order not to endanger the further co-operation.
Discussion on the podium and with the audience
The lectures — moderated by Mirjam Ibold, psychologist and member of the Action Network of Health Professionals — were accompanied by lively discussions for which there was plenty of time. The concluding panel discussion — moderated by Gesine Heetderks, psychiatrist and neurologist — focused on the question of what the consequences would be for the possible involvement of Amnesty International. There was a consensus that a dual strategy would make sense for improving the situation of people with mental illness and epilepsy. On the one hand, a sustainable change in their situation can only be achieved if appropriate influence is exerted on the government. The states concerned have signed various conventions of human rights significance, including the important Convention on the Rights of Persons with Disabilities of 2008. They can and must be made aware that the situation of these people is a violation of elementary human rights. On the other hand, however, human rights violations such as chaining people are generally not the result of sadistic motives, but rather of a lack of alternatives and helplessness in dealing with the mysterious diseases. Therefore, such a political strategy can only be successful if it is accompanied by suitable pilot projects demonstrating that in poor countries such as Burkina Faso, Côte d’Ivoire or Ethiopia, medical care for these people is also possible at affordable costs and can therefore be incorporated into government health programs. So it is not a question of pillorying governments, but of using such pilot projects to persuade them to cooperate, in their own interest, because in this way a fundamental human rights problem in their countries can be tackled and perhaps resolved.
It is a question of promoting an encouraging and helpful approach to these people through education about mental illness, epilepsy and mental disability and, above all, through real improvements in the treatment and care of those affected. This information and encouragement should involve those affected and their families, the health workers, but also the authorities and civil society. The motto “Don’t blame” should be taken into account as far as possible. Comments should be face-saving and realistic for the responsible governments, so that further investigations, development reviews, new proposals etc. can be made in constant cooperation with the administrations.