Lille 3 - Second day of Empowerment Congress
Door: Jolijn
Blijf op de hoogte en volg Jolijn
13 Februari 2014 | Frankrijk, Rijsel
It took me a while to finish this blog post. However, at 31 January 2014, I was in Lille, France for : “The European Congress: How to promote empowerment experiences of mental health users and carers in Europe? Indicators and good practices” , organized by the World Health Organization Europe Collaborating Centre (WHOECC) in Lille.
It was the second and final day of the congress. I arrived a little bit late, at 9.40 while the programme started at 9.30 (our driver got lost on the way, while we were with 6 people folded in the car). Anyway, we got there, and I immediately went to the room where I should have my workshop.
The day started with a round of workshops, divided into 4 themes:
1 Protection of human rights and tackling stigma and discrimination
2 Involvement in decision-making
3 High quality care and evaluation/accountability
4 Access to information and resources
I was scheduled in number 3: High quality care and accountability of services. When I arrived in the room, the introduction had already started. I missed most of the introduction because I had to discuss some organizational matters. I was the 4th guest-speaker in this session.
The first speaker was Nathalie Lagueux from AQRP (Canada) on employing peer support workers in mental health services in the Province of Quebec: an approach centred on empowerment promoting de-stigmatization. She spoke about labels and stigma, and how hiring peer advocates as co-workers in mental health care services has helped to reduce the stigma. Hiring peer advocates has many positive effects, such as additional expertise in the team (diversification), advocacy to ensure users rights, building bridges between team members and users (combatting social exclusion) and generating hope and a recovery-perspective to users (positive identification). Research shows that hiring peer support workers positively contributes to empowerment of users.
The second speaker was Barbara d’Avanzo of the Istituto di Ricerche Farmacologiche Mario Negri (Italy). She spoke about empowerment impact through a consumer-run quality improvement initiative. She spoke about a project on assessment of the perceived quality of care by users of mental health services. This project involved users throughout the entire process, including analysing the findings and the definition of priority issues that need to be changed. This process of evaluating the experiences of service users by a survey and involving users in a consumer focus group, had had an empowering effect on the users of these services. This project aims to integrate the concept of responsiveness to the user’s expectations into the mental health services.
The third speaker was Hela Ouennich Belhajyahia, of the office national de la famille et de la population (Tunisia). She spoke about the empowerment and its importance in the caring of women victim of violence. In the care for women victims of violence, the major focus of the treatment is on empowerment. The approach starts by listening to the woman, and raising awareness (talking about dynamics). The next stage is focussed on empowering the woman by offering support in legal procedures and self-management, and after that comes a post-treatment stage. Empowerment must not only target psychological aspects, but also social, financial and even political aspects.
I was the 4th and final guest speaker in the row, and I gave a presentation on the Eindhoven Model: Avoiding forced interventions by Family Group Conferencing (FGC). I explained that when a person doesn’t want any psychiatric care, that this doesn’t mean that the persons doesn’t want to solve the situation he/she is in. By Family Group Conferencing the person can consult with their own people of choice, to identify possibilities and to come to an own plan. Persons are entitled to make their own plan, according to the right to legal capacity. Family Group Conferencing enables self-determination with the support of the person’s own social network, and is therefore a way of supported decision making. I briefly explained the working of Family Group Conferencing and the pilot-project we started in the Netherlands to avoid forced interventions by Family Group Conferencing, which we hope to make a European project.
I was thanked for this contribution (and one of the session’s rapporteurs even congratulated me with this success. That was nice.)
Then the keynote speaker John Jenkins of IMHCN (England) spoke about several levels of creating change. He spoke about changing practices and changing thinking and how this is related. To change the system, it is needed to change the thinking and to change attitudes. And it needs to be done everywhere. Health is an issue of the community as a whole.
After a little coffee break there was time for questions, answers and discussion.
The first questions were mainly of practical nature on the projects of the other speakers. (I guess my contribution must have been clear). Then the discussion went from involvement to exclusion/inclusion, to solitary confinement and security-based institutions. This opened quite a firm discussion on forced interventions, which ended with a majority agreeing that coercion is a failure of the care system or merely a failure of the state, since 120 countries ratifies the CRPD and there is a human right to adequate quality of care services. (that was a nice conclusion). Then the topic of change was brought up again, speaking about the economic crisis and budget cuts versus the large amounts of money that still go into genetic and pharmacological research. The demand for change of the mental health care system was evident in the room, and the people with old-fashioned perceptions formed a minority. (Probably the conference theme “user empowerment” contributed to this kind of balance. Nevertheless I still have much higher expectations from WHO, such as full and active CRPD-compliance and active promotion of users human rights, including leadership in the active abolition of forced treatments/ forced hospitalization, but in that way the congress wasn't really impressive)
After lunch, at 13.30 there was a plenary session on general decisions and the reports and recommendations of the workshops, which had been prepared by the organizers during lunch time. The workshop summaries were a lot of information in a short time, which I cannot summarize meaningfully. But I was very proud to see that my contribution was listed amongst the outcomes of workshop 3:
“Promoting the experimentation of “broader” Family Group Conferencing in Europe as an alternative to forced hospitalizations: Eindhoven Model” / “Promouvoir l’experimentation de Conferences de Groupes de Familles “elarges” en Europe comme alternative aux hospitalisations sous contrainte: modele d’Eindhoven”.
It looks like I succeeded to raise awareness on the possibility to prevent coercion by Family Group Conferencing, which is based on the core value that persons themselves are the experts on their own lives. The recognition of the Eindhoven Model as a good practice by WHOECC is therefore a (small) step towards embracing the core principles of the CRPD. So I am quite happy with this recognition. We have won another little inch.
After the summaries it was time for reflections from various guest speakers.
Jasna Russo, user/survivor researcher at the Center for citizenship participation Brunel University (London) gave some very critical scientific feedback on the current misconcept of the definition of empowerment, and stated that the indicators were mainly about participation and involvement, and not about empowerment which is a fundamental change in hierarchy. There is a great difference between so-called “rubber stamp involvement” which co-opts people in the system without giving them any power to bring change, and real user-led involvement which gives users the power to make meaningful decisions and define the outcome of the processes. The word meaningful is crucial in involvement. She cited many quotations and resources, and made a very clear point.
At the end of her speech she invited me on stage for a little role play about misconceptualized empowerment (coming from the book: Critical perspectives on user involvement by Marian Barnes and Phil Cotterell). She was Mrs. Overthetop and I was Mrs. Margin. It was a very clear illustration of her critical speech.
Then Piotr Iwaneyko, chair of the European Network of Users and Survivors of Psychiatry (Poland) emphasized that the gap between Eastern and Western Europe is still widening. Despite the fact that many eastern countries adapted the models of western Europe which look nice on paper, the pattern of legislation and the general models of control and power have not significantly changed. Additionally, any independent advocacy is often done by volunteers who lack resources, and they face a counter-lobby from doctors against these NGO’s. In several countries there are even fake NGO’s which get money from Brussels for user advocacy, but in reality these organizations are run by hospitals (and represent the hospitals interests). Several things may look like a good practice on paper, but in reality it is not a good practice. It is necessary to formulate strong demands to ensure real user advocacy in all of Europe.
Then Diana Rose, King’s College (England) spoke about how empowerment relates to having choices, such as choosing one’s own goals in life, including on recovery. The person’s goals should not be limited to “acceptable goals, aimed at creating middle-class-clones”, but persons should be really allowed to make their own choices and decisions.
Empowerment is owned by the person self and not by the professionals.
There were 2 more speakers, who spoke in French. But since I was also networking at the side of the meeting, it was relatively hard to follow the translation, and I didn’t really get the message of these speakers.
At 15.30 the final session of the conference started. It was titled: General conclusions and perspectives, and it was rather ceremonial.
First there was a part about the French context of this meeting by Claire Compagnon (France), and then Jurgen Scheftlein of the European Commission spoke some words about the European context such as the European Mental Health Action Plan.
The final speaker before the official thanks-and-goodbye was Mathijs Muijen of WHO Europe (Denmark). He made some terrible remarks on stage, such as “the CRPD doesn’t apply to all of the mental health field” and “In Eastern Europe the situation is so bad, they would rather have paternalistic care than nothing” (like it’s okay to lock people up when they are poor??). And this guy is representing WHO!?? I found these positions very shocking. Afterwards I tried to talk to him about these remarks, but I got in a kind of argument with him. After 2 sentences he said “never mind” right in my face and he turned himself away. I felt really disrespected, and actually I got really upset by that. Tears were in my eyes and I tried to find a hiding place, but there was no hiding place, and I walked back into the room, still upset. Suddenly I met the main organizer, and very briefly vented my emotions, just to explain why I was suddenly upset, and then I walked on and I decided to go to the balcony to have a cigarette to calm down. When I crossed the room I heard the WHO-guy talking to other people in Dutch, and I couldn’t stop myself from sarcastically saying from a distance: “Ah you are even Dutch, It has been a long time since I was treated so disrespectful, Thank you for that”. And then I walked right out of the room. Then I had a cigarette and when I walked back into the room, the WHO-guy came to me again, and he said “I seem to have upset you, can it still be fixed or is it too much? Shall we talk now?”. I told him I appreciated his gesture of re-opening the dialogue, because I was really upset by his attitude of sidelining me, while I am actually trying to participate actively. We talked about the CRPD and its applicability to the mental health care field, but we didn’t reach consensus. That was not really a happy ending of the conference.
Afterwards we went with several people, mainly user/survivors, to the third bar in the street, which was a nice place to have a social drink and to debrief. Jasna had already left and Rene also needed to go home, so in the evening it was Gabriela, Piotr, Stephanie and me who went for dinner together. We had a good time together which lasted until midnight again. Then in the lobby of the hotel the four of us had a little ENUSP strategic meeting and made a list of things to do. It was again late when we said goodbye.
The next morning I left early to go to the train station to go back home to Eindhoven. I was quite exhausted when I reached home, but it had been a good experience to participate at this congress. It remains rather weird that WHO is not fully embracing the CRPD yet (and that some people create their own version of the CRPD’s rights). I think it was good that ENUSP took part in this meeting to raise awareness about our human rights. Many participants appreciated that contribution, and maybe the organizers as well. In the future we will find out whether the presentations of ENUSP at this congress will have any meaningful effect in this process around the empowerment of users by WHO CC Europe in Lille.
It was the second and final day of the congress. I arrived a little bit late, at 9.40 while the programme started at 9.30 (our driver got lost on the way, while we were with 6 people folded in the car). Anyway, we got there, and I immediately went to the room where I should have my workshop.
The day started with a round of workshops, divided into 4 themes:
1 Protection of human rights and tackling stigma and discrimination
2 Involvement in decision-making
3 High quality care and evaluation/accountability
4 Access to information and resources
I was scheduled in number 3: High quality care and accountability of services. When I arrived in the room, the introduction had already started. I missed most of the introduction because I had to discuss some organizational matters. I was the 4th guest-speaker in this session.
The first speaker was Nathalie Lagueux from AQRP (Canada) on employing peer support workers in mental health services in the Province of Quebec: an approach centred on empowerment promoting de-stigmatization. She spoke about labels and stigma, and how hiring peer advocates as co-workers in mental health care services has helped to reduce the stigma. Hiring peer advocates has many positive effects, such as additional expertise in the team (diversification), advocacy to ensure users rights, building bridges between team members and users (combatting social exclusion) and generating hope and a recovery-perspective to users (positive identification). Research shows that hiring peer support workers positively contributes to empowerment of users.
The second speaker was Barbara d’Avanzo of the Istituto di Ricerche Farmacologiche Mario Negri (Italy). She spoke about empowerment impact through a consumer-run quality improvement initiative. She spoke about a project on assessment of the perceived quality of care by users of mental health services. This project involved users throughout the entire process, including analysing the findings and the definition of priority issues that need to be changed. This process of evaluating the experiences of service users by a survey and involving users in a consumer focus group, had had an empowering effect on the users of these services. This project aims to integrate the concept of responsiveness to the user’s expectations into the mental health services.
The third speaker was Hela Ouennich Belhajyahia, of the office national de la famille et de la population (Tunisia). She spoke about the empowerment and its importance in the caring of women victim of violence. In the care for women victims of violence, the major focus of the treatment is on empowerment. The approach starts by listening to the woman, and raising awareness (talking about dynamics). The next stage is focussed on empowering the woman by offering support in legal procedures and self-management, and after that comes a post-treatment stage. Empowerment must not only target psychological aspects, but also social, financial and even political aspects.
I was the 4th and final guest speaker in the row, and I gave a presentation on the Eindhoven Model: Avoiding forced interventions by Family Group Conferencing (FGC). I explained that when a person doesn’t want any psychiatric care, that this doesn’t mean that the persons doesn’t want to solve the situation he/she is in. By Family Group Conferencing the person can consult with their own people of choice, to identify possibilities and to come to an own plan. Persons are entitled to make their own plan, according to the right to legal capacity. Family Group Conferencing enables self-determination with the support of the person’s own social network, and is therefore a way of supported decision making. I briefly explained the working of Family Group Conferencing and the pilot-project we started in the Netherlands to avoid forced interventions by Family Group Conferencing, which we hope to make a European project.
I was thanked for this contribution (and one of the session’s rapporteurs even congratulated me with this success. That was nice.)
Then the keynote speaker John Jenkins of IMHCN (England) spoke about several levels of creating change. He spoke about changing practices and changing thinking and how this is related. To change the system, it is needed to change the thinking and to change attitudes. And it needs to be done everywhere. Health is an issue of the community as a whole.
After a little coffee break there was time for questions, answers and discussion.
The first questions were mainly of practical nature on the projects of the other speakers. (I guess my contribution must have been clear). Then the discussion went from involvement to exclusion/inclusion, to solitary confinement and security-based institutions. This opened quite a firm discussion on forced interventions, which ended with a majority agreeing that coercion is a failure of the care system or merely a failure of the state, since 120 countries ratifies the CRPD and there is a human right to adequate quality of care services. (that was a nice conclusion). Then the topic of change was brought up again, speaking about the economic crisis and budget cuts versus the large amounts of money that still go into genetic and pharmacological research. The demand for change of the mental health care system was evident in the room, and the people with old-fashioned perceptions formed a minority. (Probably the conference theme “user empowerment” contributed to this kind of balance. Nevertheless I still have much higher expectations from WHO, such as full and active CRPD-compliance and active promotion of users human rights, including leadership in the active abolition of forced treatments/ forced hospitalization, but in that way the congress wasn't really impressive)
After lunch, at 13.30 there was a plenary session on general decisions and the reports and recommendations of the workshops, which had been prepared by the organizers during lunch time. The workshop summaries were a lot of information in a short time, which I cannot summarize meaningfully. But I was very proud to see that my contribution was listed amongst the outcomes of workshop 3:
“Promoting the experimentation of “broader” Family Group Conferencing in Europe as an alternative to forced hospitalizations: Eindhoven Model” / “Promouvoir l’experimentation de Conferences de Groupes de Familles “elarges” en Europe comme alternative aux hospitalisations sous contrainte: modele d’Eindhoven”.
It looks like I succeeded to raise awareness on the possibility to prevent coercion by Family Group Conferencing, which is based on the core value that persons themselves are the experts on their own lives. The recognition of the Eindhoven Model as a good practice by WHOECC is therefore a (small) step towards embracing the core principles of the CRPD. So I am quite happy with this recognition. We have won another little inch.
After the summaries it was time for reflections from various guest speakers.
Jasna Russo, user/survivor researcher at the Center for citizenship participation Brunel University (London) gave some very critical scientific feedback on the current misconcept of the definition of empowerment, and stated that the indicators were mainly about participation and involvement, and not about empowerment which is a fundamental change in hierarchy. There is a great difference between so-called “rubber stamp involvement” which co-opts people in the system without giving them any power to bring change, and real user-led involvement which gives users the power to make meaningful decisions and define the outcome of the processes. The word meaningful is crucial in involvement. She cited many quotations and resources, and made a very clear point.
At the end of her speech she invited me on stage for a little role play about misconceptualized empowerment (coming from the book: Critical perspectives on user involvement by Marian Barnes and Phil Cotterell). She was Mrs. Overthetop and I was Mrs. Margin. It was a very clear illustration of her critical speech.
Then Piotr Iwaneyko, chair of the European Network of Users and Survivors of Psychiatry (Poland) emphasized that the gap between Eastern and Western Europe is still widening. Despite the fact that many eastern countries adapted the models of western Europe which look nice on paper, the pattern of legislation and the general models of control and power have not significantly changed. Additionally, any independent advocacy is often done by volunteers who lack resources, and they face a counter-lobby from doctors against these NGO’s. In several countries there are even fake NGO’s which get money from Brussels for user advocacy, but in reality these organizations are run by hospitals (and represent the hospitals interests). Several things may look like a good practice on paper, but in reality it is not a good practice. It is necessary to formulate strong demands to ensure real user advocacy in all of Europe.
Then Diana Rose, King’s College (England) spoke about how empowerment relates to having choices, such as choosing one’s own goals in life, including on recovery. The person’s goals should not be limited to “acceptable goals, aimed at creating middle-class-clones”, but persons should be really allowed to make their own choices and decisions.
Empowerment is owned by the person self and not by the professionals.
There were 2 more speakers, who spoke in French. But since I was also networking at the side of the meeting, it was relatively hard to follow the translation, and I didn’t really get the message of these speakers.
At 15.30 the final session of the conference started. It was titled: General conclusions and perspectives, and it was rather ceremonial.
First there was a part about the French context of this meeting by Claire Compagnon (France), and then Jurgen Scheftlein of the European Commission spoke some words about the European context such as the European Mental Health Action Plan.
The final speaker before the official thanks-and-goodbye was Mathijs Muijen of WHO Europe (Denmark). He made some terrible remarks on stage, such as “the CRPD doesn’t apply to all of the mental health field” and “In Eastern Europe the situation is so bad, they would rather have paternalistic care than nothing” (like it’s okay to lock people up when they are poor??). And this guy is representing WHO!?? I found these positions very shocking. Afterwards I tried to talk to him about these remarks, but I got in a kind of argument with him. After 2 sentences he said “never mind” right in my face and he turned himself away. I felt really disrespected, and actually I got really upset by that. Tears were in my eyes and I tried to find a hiding place, but there was no hiding place, and I walked back into the room, still upset. Suddenly I met the main organizer, and very briefly vented my emotions, just to explain why I was suddenly upset, and then I walked on and I decided to go to the balcony to have a cigarette to calm down. When I crossed the room I heard the WHO-guy talking to other people in Dutch, and I couldn’t stop myself from sarcastically saying from a distance: “Ah you are even Dutch, It has been a long time since I was treated so disrespectful, Thank you for that”. And then I walked right out of the room. Then I had a cigarette and when I walked back into the room, the WHO-guy came to me again, and he said “I seem to have upset you, can it still be fixed or is it too much? Shall we talk now?”. I told him I appreciated his gesture of re-opening the dialogue, because I was really upset by his attitude of sidelining me, while I am actually trying to participate actively. We talked about the CRPD and its applicability to the mental health care field, but we didn’t reach consensus. That was not really a happy ending of the conference.
Afterwards we went with several people, mainly user/survivors, to the third bar in the street, which was a nice place to have a social drink and to debrief. Jasna had already left and Rene also needed to go home, so in the evening it was Gabriela, Piotr, Stephanie and me who went for dinner together. We had a good time together which lasted until midnight again. Then in the lobby of the hotel the four of us had a little ENUSP strategic meeting and made a list of things to do. It was again late when we said goodbye.
The next morning I left early to go to the train station to go back home to Eindhoven. I was quite exhausted when I reached home, but it had been a good experience to participate at this congress. It remains rather weird that WHO is not fully embracing the CRPD yet (and that some people create their own version of the CRPD’s rights). I think it was good that ENUSP took part in this meeting to raise awareness about our human rights. Many participants appreciated that contribution, and maybe the organizers as well. In the future we will find out whether the presentations of ENUSP at this congress will have any meaningful effect in this process around the empowerment of users by WHO CC Europe in Lille.
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Je kunt nu ook Smileys gebruiken. Via de toolbar, toetsenbord of door eerst : te typen en dan een woord bijvoorbeeld :smiley
