DH BIO meeting on Draft Additional Protocol
Door: Jolijn Santegoeds
Blijf op de hoogte en volg Jolijn
14 Juni 2019 | Frankrijk, Straatsburg
The topic of the meeting was the Council of Europe- Draft Additional Protocol to the Oviedo Convention, which concerns new standards on involuntary treatment and involuntary placement, affecting all of Europe.(For more information, see: http://www.edf-feph.org/withdraw-additional-protocol-oviedo-convention )
With a growing number of European NGOs, we are campaigning against this proposed "Draft Additional Protocol concerning the protection of human rights and dignity of persons with mental disorder with regard to involuntary placement and involuntary treatment."
This proposed Draft obviously clashes with the United Nations Convention on the Rights of Persons with Disabilities (UN CRPD). Therefore we call to #WithdrawOviedo.
I was participating on behalf of ENUSP, the European Network of Users, Ex-Users and Survivors of Psychiatry (http://enusp.org ), part of the EDF-delegation, together with representatives of other European NGOs , such as MHE, EASPD and others. I was the only person with lived experience of involuntary placement and involuntary treatment.
To enable my participation, I had launched a fundraising-campaign at GoFundMe (see: https://www.gofundme.com/mindrights-torturefree-psychiatry ). And with the support of EDF (European Disability Forum) I succeeded to have the travel arrangements covered.
On Wednesday 5 June I departed from home very early, and arrived around 10 AM at Strasbourg Airport. I then made my way to the European area, where I had a lunch meeting with those of the EDF delegation who were already present in Strasbourg. We had lunch with about 6-7 persons near the Council of Europe building, and we talked through the state of affairs.
At 15.00 in the afternoon we had a meeting with the Council of Europe - Human Rights Commissioner Office, with Claudia Lam (Deputy to the Director a.i.) and Hasan Bermek (Advisor on the Rights of Persons with Disabilities). In a pleasant meeting, we exchanged views on the current situation and explored possible scenarios regarding next steps in the process. Much is still unclear. We will have to anticipate to the activities of the Bioethics Committee, and try to influence every step of the process. We will continue to campaign to #WithdrawOviedo and raise awareness at all levels. It was a very interesting exploring exercise of potential next steps. The meeting on 6 June will bring more clarity to some extent.
After the meeting with the Human Rights Commissioner Office, we all went to our hotel rooms. I still had to check in. Around 18.00 I was meeting up with Kristijan Grdjan (MHE), and we spent the evening sitting by the river, escaping the heat a bit, and having interesting conversations.
Later that night, when I was alone in my hotel, I had a rather stressful episode. It is a fact that being in a stressful situation sometimes can have its impact. After a long phone call, I went to sleep, and the next morning I felt ready for the job.
On Thursday 6 June 2019, I woke up early, packed my bags and left to the Council of Europe Building by tram, where the meeting of the Bioethics Committee started at 9 AM. The EDF delegation counted 8 persons, and we occupied a full row in the room.
There were 3 main topics discussed in the meeting, which lasted from 9.00 to 13.00.
The first topic of the meeting was actually not about the substance of the Draft Additional Protocol itself, but it was about a proposal to ask the European Court on Human Rights (ECtHR) for their Advisory Opinion on the Draft Additional Protocol.
Proposal to request an Advisory Opinion of the European Court on Human Rights (ECthR) on the Draft Additional Protocol.
The Bioethics Committee is discussing the option, under Article 29 of the Oviedo Convention, to ask the European Court on Human Rights (ECtHR) for their interpretation of the Draft Additional Protocol, with regards to the interrelation of Oviedo Article 7 and Oviedo Article 26, and the existing caselaw.
Copied text of articles 7 and 26 and 29
“Article 7 – Protection of persons who have a mental disorder
Subject to protective conditions prescribed by law, including supervisory, control and appeal procedures, a person who has a mental disorder of a serious nature may be subjected, without his or her consent, to an intervention aimed at treating his or her mental disorder only where, without such treatment, serious harm is likely to result to his or her health.
Article 26 – Restrictions on the exercise of the rights
1 No restrictions shall be placed on the exercise of the rights and protective provisions contained in this Convention other than such as are prescribed by law and are necessary in a democratic society in the interest of public safety, for the prevention of crime, for the protection of public health or for the protection of the rights and freedoms of others.
2 The restrictions contemplated in the preceding paragraph may not be placed on Articles 11, 13, 14, 16, 17, 19, 20 and 21.
Article 29 – Interpretation of the Convention
The European Court of Human Rights may give, without direct reference to any specific proceedings pending in a court, advisory opinions on legal questions concerning the interpretation of the present Convention at the request of:
–the Government of a Party, after having informed the other Parties;
–the Committee set up by Article 32, with membership restricted to the Representatives of the Parties to this Convention, by a decision adopted by a two-thirds majority of votes cast. “
You can find the full text of the Oviedo Convention here: https://www.coe.int/en/web/conventions/full-list/-/conventions/rms/090000168007cf98
So to summarize:
Article 7 is about so-called “danger to the OWN health or safety” and does not include "danger to others" (so that is excluded from that article).
And Article 26 is about exceptions, regarding interventions to protect the rights and freedoms of OTHERS.
The president of the meeting explained: The nature of the questions to ECtHR would be about whether Article 7 excludes treatment without consent regarding harm to others, and whether Article 26 has the same limitations as the European Convention on Human Rights article 8. There is also a question about the specification of protective conditions under article 7 regarding supervisory, control and appeal procedures. Possibly the ECtHR caselaw could bring answers. Therefore the proposal is to ask the ECtHR for their interpretation based on their caselaw. Subsequently, it would then be possible to follow the ECtHR caselaw and use the same decision making principles in the Draft Additional Protocol.
The ECtHR-Advisory Opinion would not be binding, yet it will have a certain weight, since the Draft Additional Protocol should not be contradictive, but adhere to the same principles and basis as the caselaw of the ECtHR.
During the meeting on 6 June, the Bioethics Committee members discussed this proposal to get an advisory opinion from ECtHR, and there were a variety of opinions on whether this would be useful or not. Many questions were raised.
According to some of the members of the Bioethics Committee, the mentioned scope and limitations on the articles 7 and 26 are too vague, thus requiring an Advisory Opinion of ECtHR.
Some members (e.g. Turkey) saw no need as they considered the articles were clear in itself.
Some argued that a specific request on a particular topic can only be submitted when there is a legal void that has to be filled, which is not the case since there is a lot of caselaw on measures against the will of the person to protect from harm to self or others. It is unclear if the Court can refuse the request.
Some members found it was wrong to use the Court to solve a political dispute of different interpretations, and e.g. the representative of Switzerland underlined that a Court opinion wouldn't help to solve the problem of different opinions and isn't a way to bring stakeholders closer together. It will only confirm existing jurisprudence, and the question is will that change anything? There is fierce opposition by NGOs opposing the full nature of the Draft Additional Protocol (not just disagreeing with a few articles). The position of the Court will not change that, and it doesn’t resolve the political question.
Some States questioned what would be done with the Court Opinion (will it be considered binding, or cause more division? can it be ignored?)
Will there be a few questions in consistency, or a whole lot of detailed requests on various topics?
The Bureau explained that the ECtHR Advisory Opinion would serve to enlighten the Committee with guidance for the phrasing of the Draft, and e.g. explain whether article 26 is only limited to ‘life-threatening danger’ or not.
France asked questions about “risk of serious harm to self or others”, and stressed that the key is in the relation between article 7 and article 26. The ECtHR cases already specify the circumstances, so why ask for clarification.
The representative of UK asked whether the relation with the UN CRPD could be included in the request to ECtHR, especially since the ECtHR caselaw is also evolving in this direction (e.g. Rooman v. Belgium). Also the link with Article 6 Oviedo should be explored, regarding elements of resisting treatment (which has been applied regarding tuberculosis (TB), yet the difference between mental health and TB was beyond question). And what about budget and workload of ECtHR.
Malta raised questions about the framing of the “last resort” principle, which is open for interpretation, and legal cases are generally vague on this. Also the liability of doctors regarding the life of the patients and the standard of care must be clarified (e.g. regarding prevention of crime)
Greece stated that all opinions are welcome and will contribute to wisdom and expertise.
Bosnia Hercegovina mentioned that they questioned whether freedom would be a good solution for everyone, illustrating their position with a situation where persons were de-institutionalized and seemed “unable to live in the community independently”. (I responded to this point later in the meeting)
The Committee decided to vote to see whether there was enough support to proceed with preparing the Questions. Switzerland said no. Many states abstained since their support would depend on the scope and phrasing of the questions, and some states were in support of proceeding with the Questions.
Eventually it was decided that the Request would be drafted first, since support would depend on the substance of the request. It was decided that a draft set of questions of 1-2 pages will be prepared by DH BIO Bureau to be discussed further in their November session, e.g. to see if there is support to continue along this line, and to decide on the formulation of the questions, and to decide upon submitting.
The Article-29 Procedure has never been done before, so the rules of procedures are not fully clear yet. E.g. it is unclear if the Court can reject such a request for an advisory opinion, or whether they can e.g. take the UN CRPD or expert opinions into account. It is estimated that the procedure, and obtaining the Advisory Opinion from ECtHR, would take about 6 months or a year.
Personally, I find this a worrying proposal, since the ECtHR jurisprudence is reflecting the old paradigm, composed of old standards dating from far before the UN CRPD came into existence. It is unlikely that a new paradigm will emerge through their Advisory Opinion. They are likely to repeat the status quo, which basically would leave everything the way it is now.
And indeed it is questionable whether an Advisory Opinion from the ECtHR could be ignored.
Speculative: The request for an Advisory Opinion of ECtHR could be a “trick” of DH BIO to use the ECtHR as a “shield” in their decision making: It is unlikely that DH BIO would go against any Advisory Opinion of the ECtHR, so, the Advisory Opinion is likely to be followed. Based on the supposed ‘authority’ of the ECtHR interpretation and jurisprudence, DH BIO could continue to ‘justify’ their outdated approach, and the Advisory Opinion of ECtHR could hypothetically be used to supersede the discussions, including sidelining the views of European NGOs and human rights experts. Possibly, DH BIO intends to use the procedural hierarchy to avoid taking conflicting decisions themselves, and hide behind the ECtHR stance on this.
More optimistic speculations could be that the DH BIO Committee is merely causing delay to avoid having to take a conflicting decision on whether to proceed with the draft despite human rights objections (since the Draft Additional Protocol was ordered by the Council of Ministers, the Bioethics Committee may not be free to reject the task to draw up the Draft Additional Protocol with this very scope and title on involuntary placement and involuntary treatment).
We will see how it all turns out.
Personally, I also feel a need to mention that the ECtHR is not recognizing or reflecting the real scope of human rights violations with regards to involuntary placement and treatment in Europe (My personal case is just one example of complaints ignored by ECtHR, and with me are thousands of others who systematically lack access to justice). The small number of cases in which the ECtHR found human rights violations in mental health care, is just the tip of an iceberg. The real number of complaints is much, much higher. Yet the systematic power imbalances leaves most of them invisible and voiceless. So in my opinion, the DH BIO is about to make a bad choice in asking ECtHR for their opinion on this particular topic of human rights. The ECtHR caseload is neither reflecting the highest standard of human rights, nor is it reflecting the lived experience of human rights and – violations across Europe.
ENUSP and other NGOs will stay on top of these developments, preparing collectively to keep pushing to #WithdrawOviedo.
After a coffee break, the meeting proceeded with the second topic. It was 11.30 by then.
Study on Voluntary Measures
The Bioethics Committee Secretariat has prepared a “Concept note on a study on good practices in mental health care – How to promote voluntary measures” (doc: DH-BIO(2019)1-confidential)
The announcement of the Study on Good Practices/Voluntary Measures was already communicated to us earlier.
(see e.g. the notes of the lunch-meeting on #WithdrawOviedo during the Workforum on 13 May in Brussels: https://punkertje.waarbenjij.nu/reisverslag/5053167/ec-work-forum-on-un-crpd-implementation-in-the-eu )
Copied paragraph of 13 May meeting:
“.. DH BIO is now examining a “concept note for a study on alternatives to involuntary measures”. This seems like a good progress, because it is a first crack in the old paradigm at the Council of Europe. In that regards it is surely positive.
Yet I reacted also more critical. I said it could also be a political move of distraction, a bribe, to keep us at the table, and still maintain the ‘first part of the draft’, on which the discussion now seems to be moving away. And also I need to question: how much difference will their guidance paper actually make, as it won’t be a binding standard, not give resources, and we also have other bodies like WHO giving firm standards nowadays. Conflicting standards should be avoided. So I am a bit skeptical. As long as the Draft still attempts to authorize coercive practices, it is unacceptable to me, regardless of the amount of ‘pleasant theories’ that surround these human right violations. “
Within EDF we had already agreed that the Study on Voluntary Measures in itself is positive step, - however the advocacy against the Draft Additional Protocol itself remains unchanged.
The president of the meeting explained: During the work on the Draft Additional Protocol, the Bioethics Committee has been informed about many good practices and voluntary measures which are successful in avoiding coercion. Examples included e.g. housing combined with social support. The plan is to consult NGOs on the Good Practices, together with all relevant actors, and to perform a study on the Good Practices. To this end, a Roundtable conference will be planned, to give more clarity on the expected outcome of the study, and on what can be done, and who can be consultants.
It was agreed that the Bioethics Committee will organize the Roundtable meeting on Good Practices, tbc in Brussels in November 2019, to identify the frame and scope of the Study on Good Practices/Voluntary Measures, and to find out who can take responsibility for carrying out the study. The plan is to invite all stakeholders, mentioned e.g. NGOs, CPT, PACE, ENNHRI etcetera.
--> input can be sent to DH BIO to prepare the Roundtable on Voluntary Measures. The call for input will be sent out by DH BIO before summer, so there will be enough time for them to collect input for the Roundtable before November.
A small practical point was added, before the discussion on the Study on Good Practices/Voluntary Measures took place:
Budget cuts at Council of Europe, DH BIO
There is a situation of budget cuts affecting the Council of Europe, and affecting the agenda of the Bioethics Committee (because Russia chose to stop paying CoE fee). The budget cuts may be a barrier for the Study on Voluntary Measures. Voluntary donations of Member States are asked, and it is unclear if e.g. NGOs could give funding for the Study on Good Practices/Voluntary measures.
The Bioethics Committee members discussed the proposal of the Study and Roundtable consultation on Good Practices. There was wide support for the Study. Not a single objection, but rather consensus amongst all stakeholders (very unlike the Draft Additional Protocol itself. The contrast between the 2 approaches is clear).
During the discussions, the Bioethics Committee members mostly made additional suggestions.
Norway strongly supported the Study, mentioned the Research-network on Coercion, and suggested to involve CPT. Sweden suggested to include International NGOs and professional organizations.
France suggested WHO CC Lille, where hospital beds have been turned into day care, and peer support is evolving. Also the WHO Quality Rights assessments can help to find best practices.
The Council of Europe’s own Parliamentary Assembly (PACE) also supported the Study, as can be seen from their recent publication: PACE committee calls for an end to coercive practices in mental health http://assembly.coe.int/nw/xml/News/News-View-EN.asp?newsid=7478〈=2
Reina de Bruin-Wezeman also highlighted an example from the Netherlands where a number of nurses feel conflicted about the use of confinement, and the administration of medication without consent, yet the practices appear hard to change e.g. due to the prescriptions for a “safe work environment”. More understanding about alternatives is needed. An expert opinion could be supportive to bring change.
The European NGO-delegation requested the floor.
Pat Clarke stated on behalf of EDF (European Disability Forum) that European NGOs and OPDs welcome the Study on Good Practices, yet we still oppose the Draft, because it seeks to legitimize human rights violations which is unacceptable. It must be flagged that there is also no consensus amongst professionals on the use of involuntary measures. 46 out of 47 member states of the Council of Europe have ratified the UN Convention on the Rights of Persons with Disabilities (UN CRPD), which means the UN CRPD is the current legal ethical framework that the Council of Europe must follow too. This means to ensure protection of human rights for all persons, and to fully ban coercion. Many studies have already been done on Good Practices, and duplication should be avoided. It is important to work with Organizations of Persons with Disabilities (OPDs) . The UN CRPD requires to include persons with disabilities in all stages of decision making processes: “Nothing about us, without us”. EDF and its members remain willing to contribute to the process.
Pep Sole spoke on behalf of EASPD (European Association of Service Providers for Persons with Disabilities). He stressed the importance of community based services, and firmly stated that involuntary measures must be decreased absolutely. It is not wise to put energy in the Draft Additional Protocol, because it does not work. The minimal consensus about the use of coercion is impossible to achieve. The Draft Additional Protocol was started before the UN CRPD, and the ratification of the UN CRPD changed the views of Member States on the rights of persons with disabilities. After CRPD-ratification coercion cannot be allowed or justified and states cannot act like nothing has changed. When a person is seemingly unable to live independently, the State must provide support. Professionals do not want to use coercion, and they feel bad about it, as if they are failing and do not know what to do. What is needed are alternatives, and building up a real mental health policy, instead of authorizing violations.
Then I made my intervention on behalf of ENUSP (European Network of (Ex-) Users and Survivors of Psychiatry). I stressed that coercion and care are the opposite of each other. Imagine being confined without having done a crime, but just based on the assumption of someone else. This is a horrible experience, which doesn’t bring wellbeing or recovery. So I asked:
1.Whose wellbeing is the topic? We all know coercion is a violation and it cannot be called care.
2. Besides that, it is not a medical issue. It has been widely acknowledged that mental health problems result from adverse experiences such as trauma, violence, discrimination, power imbalances, poverty, lack of chances. All of these are human rights issues, which must be addressed as such. A social approach to mental health is needed.
3. Coercion is traumatizing and creates distance, undermines trust and contact, and therefore coercion disables meaningful care-relations. Trust and good relations are crucial for real mental health support. Coercion disables support by breaking relations, and it must be banned.
4. Coercion is said to be a "last resort when alternatives are not available", but very often the alternatives exist only in theory and are not available at all, leading to widespread coercion. If no resources are added then how will this change?
To illustrate the situation, coercion happened to me because there was no 24/7 support available. Then the staff used the last resort. However, this is a care-gap. This care-gap cannot be filled with coercion. What is needed is real care. (to compare: In medical care a health-crisis would result in Intensive Care where many resources are made available. In mental health care we see the contrary: in a mental health-crisis situation resort is made to coercion and the staff is actually physically and emotionally abandoning the person. How can abandonment be called care? This is merely “not care”). The care-gap must be filled with real care and support. No more resort to coercion. This is the real job of DH BIO here.
5. Regarding the Study on Good Practices: Be mindful that many of the good practices may be dedicated to so-called medium/milder problems (e.g. therapies etc.). It will be crucial to explicitly also include the Good Practices for preventing and overcoming severe crisis situations and escalations.
6. When mentioning "risk for harm to self or others", it is actually about a hypothetical situation in the future, but nobody can look into the future. It is preventive detention based on disability, which is a human rights violation by definition.
7. There is basically no access to justice, and no option to complain effectively, because practices have been authorized by laws and are not regarded as violations. (illustrated with my testimony: 24 years of complaints at all levels and not even any investigation in the Netherlands, nor by the European Court on Human Rights. You may imagine what the situation is like in the rest of Europe…). Most safeguards apply only afterwards (e.g. a theoretical right to challenge decisions afterwards, after the harm already has been done). This is not protecting us.
8. It is important to note that the psychiatric system of institutions and coercion did not originate from science, but springs from a dark history of xenophobia in Europe, which was never fully addressed and remedied in Europe. Only in recent decades science, evidence, and experience-based practices came into the field, such as trauma-informed approach, recovery and empowerment, community based support. The development of real mental health support is still young and it needs to be fostered. The CRPD offers a great and historical momentum to make the shift, from exclusion to inclusion, and to break forever with the harsh practices of the past, and to ensure real support is available, which puts the wellbeing of the person central.
9. The argument "coercion still happens so it must be regulated" doesn't make sense; e.g. rape also still happens but nonetheless it is prohibited.
6. Real care and support are possible and the UN CRPD gives us these rights. We want no compromise. Invest in support, not coercion. Withdraw the Additional Protocol to the Oviedo Convention!
Kristijan Grdjan spoke on behalf of MHE (Mental Health Europe) and stressed that the Bioethics Committee should abide by the mental health standards, including the standards under the UN CRPD. Solitary confinement is not good for anyone, yet the Bioethics Committee considers this is different “only for persons with disabilities”. This should make the Committee think deeply about what they are doing here. Before the UN CRPD, the lack of care was not considered a crime, yet the CRPD makes clear that failure to provide support is a human rights violation. The promotion of voluntary care should not be hindered. He highlighted the MHE-report on Promising Practices to End Coercion in Mental Health Services (see: https://mhe-sme.org/coercionreport/ )
Claude Mathis spoke on behalf of IE (Inclusion Europe) and highlighted that persons with intellectual disabilities and their families also oppose the Draft Additional Protocol, which does not protect the human rights of persons with disabilities, but is an open door for violations. As an illustration he pointed at the BBC television which recently exposed horrific conditions in Whorlton Hall hospital in the UK (e.g. see http://www.edf-feph.org/newsroom/news/close-institutions-now-our-reactions-abuses-whorton-hall-specialist-hospital ) . The focus should be exclusively on good voluntary care, and on decision making processes with support and no undue influence, e.g. regarding consent to treatments. The General Comment on CRPD article 12 offers guidance. The Bioethics Committee should not disregard civil society and human rights bodies who are actively taking part in the discussion on the Draft Additional Protocol. Also the Council of Europe Disability Strategy 2017-2023 mentions equal recognition before the law, equality and non-discrimination, and freedom from exploitation, violence and abuse as Priority Areas. (see: https://rm.coe.int/16806fe7d4 )
I could sense that the interventions by the EDF-delegation changed the atmosphere in the room a bit.
The discussion on the Study on Good Practices/Voluntary Measures continued.
Ireland is a strong supporter of the Study.
Bosnia Hercegovina expressed support for the Study on Voluntary Measures, and illustrated this with a project on persons with PTSD: after the war, they were initially put in hospital beds with medication, but that didn’t help, after which the system was reformed and based on support, early intervention, prevention of relapse, coordinated care etcetera. Persons with PTSD are now receiving community based support. It works for mild and also severe situations. (It was very interesting to see this insightful remark coming from the representative of Bosnia, who had earlier questioned whether freedom would be appropriate for all).
Malta stated that mental health care is not ideal yet, and there is much scope to decrease coercion. To zero or almost zero, such disagreements may be solved in the Roundtable. A comparison could be made by collecting sample data over a defined time, to seek the involuntary admissions and check if they could have been avoided. If there are places with fewer coercion, then one has to find the reasons and options for improvement.
PACE underlined that practices indeed vary from place to place, even within hospitals. E.g. coercion in France may vary from 80% in 1 place to 0% in another place. Also in Germany it varies. A study would be important.
Romania also supported the Study.
I asked for second intervention, regarding a study by comparison of data to see if coercion can be avoided. I stated that for such a comparison the right questions have to be asked, since it is already clear that the use of coercion depends largely on the available resources, and the availability of “First resorts” before the last resort. Again I illustrated this with the example that coercion happened to me because there was no 24/7 support available, and then they had no other option available than the “last resort” which was coercion. This was in the Netherlands, and it is considered legal. I have no way to access justice with my complaints. I did try. While if staff would have been available, more skilled, the coercion could have been avoided.
Regarding the remark of the representative of Bosnia Hercegovina on “people unable to live independently”, I brought attention to the heartbreaking Esidimeni tragedy in South Africa, where an institution was closed due to human rights violations, and the persons were just sent out on the streets, or to shady and corrupt ‘pop-up NGOs’ . The majority of them, 140 person lost their lives, most of them within weeks, because they had literally no support for even their most basic needs. No compassion. They were sent away without support and died alone in deep suffering. The State should have taken responsibility to protect their very basic human right to life, by providing community based support, and fostering inclusion. UN experts, including the UN Special Rapporteur on Disability. Mrs. Catalina Devandas, have made recommendations regarding state responsibilities concerning this tragedy. (see https://www.ohchr.org/EN/NewsEvents/Pages/DisplayNews.aspx?NewsID=20981&LangID=E ) This should never ever happen again anywhere. It should be a lesson for us all, in remembrance of those who lost their lives due to a lack of support.
The discussion of the Bioethics Committee continued.
Switzerland supported the Study on Good Pracices/Voluntary Measures, and stated that they found soft law the correct protocol to regulate voluntary measures. So not frame or incite hard norms but guide the good practices. The existing framework of the Oviedo Convention offers conditions for involuntary treatment and formal rights: right to be heard, extensive case law of the European Court (e.g. Rooman v Belgium). Including the requirement of the specific aspect/element of treatment (“therapeutic purpose”) , since confinement in itself is not treatment. There has been a case against Switzerland about danger to others, where it was assumed that danger to others also implies a danger to self (extension by interpretation), and it was found sufficient. The Study on Voluntary Measures should not deal with coercion, conditions and legal framework. The political support for coercive ‘protection’ has gone sour and is not taking us forwards.
Cyprus also supported the Study, and stressed that the contribution of NGOs will be very important in the round table, and the agenda needs to be very specific. The Roundtable needs to be complete, but also ‘the right size’.
To conclude on this part: There was unanimous support to organize the Roundtable and the Study. The Secretariat will send a call for submission to delegations and OPDs. In consultation with OPDs, a roundtable will be organised in Brussels in the fall.
Then there was about 15 minutes left for the last topic on the agenda.
Draft Additional Protocol to the Oviedo Convention
The bureau stated that the objective remains relevant. They will carefully review the Draft Additional Protocol with all opinions they received, and aim to strengthen alternatives.
Unfortunately I had to leave about 10 minutes before the meeting ended, but the EDF-delegation kept me closely informed on the outcomes on this part.
It was decided that the Committee will continue working on the Draft Additional Protocol. They will organize an enlarged bureau meeting to revise the Draft Additional Protocol in October 2019. Delegations interested in working on the text should indicate it.
Switzerland stated that it does not want voluntary measures to be regulated at all. Their proposal is to reconsider the form of the instrument: Possibly the form of recommendation would be suitable, instead of the protocol that has to be ratified. Besides that, the protocol will be chased by too many players to survive.
Spain stated that the task is not to change only words, but our approach. We should think about recommendations. It would be useful to compare the underlying principles in the UN CRPD, also in terms of implementation of the additional protocol.
Sweden supports the continued efforts on the Draft Additional Protocol and the Bureau responsible of the further work.
The proposal is:
1. An increased focus on voluntary measures needs to be made visible, voluntary care need to be added
2. Clarification on terminology: voluntary instead of alternative
3. Clarification of the term of mental disorder
Organizations of Persons with Disabilities (OPDs) should be consulted, and organizations such as ENUSP and other members of EDF remain willing to share our expertise in order to secure human rights in Europe for all persons, with and without disability.
It had been a tough meeting. I noticed that it gave me true stress, (e.g. by the fear of Europe going the wrong way and possibly being ignorant to human rights?). It is a fact that I had to pass the building of the European Court on Human Rights twice a day, confronting me with the impunity of coercive psychiatry in Europe. And the Court and the Council are like twins, they are somehow joined together. So sometimes the fear brings stress. Yet, I try to remain hopeful, since on the other hand, I still do believe that the Council of Europe cannot ignore the UN CRPD. They will have to come around eventually. That idea fills me with huge hopes: What if all the energy stops going into coercion, and the focus would be real wellbeing, real mental health, for all people. Europe would be really different if real wellbeing and mental health would be a priority.
I have been facing some hard circumstances and challenges lately, and I am actually proud that I managed to participate in this meeting. I am thankful that I was given the chance by the people who donated to fund my trip. I was happy to be heard. Instead of feeling powerless to the impunity, I can now help pushing for awareness at this important level, which will affect all Europeans in all member states. Much is at stake (e.g. see the report: Mapping and Understanding Exclusion by MHE: https://mhe-sme.org/wp-content/uploads/2018/01/Mapping-and-Understanding-Exclusion-in-Europe.pdf )
The Draft Additional Protocol puts fear in the hearts of (ex)users and survivors of psychiatry, because we know what it means to be placed in institutions against one’s will, being held down by force, overpowered by a “crisis team”, stripped from clothes and possessions, drugged against one’s will, confined, solitude, disoriented numbed and harmed by psychiatric drugs, restrained in belts on a bed, away from family and friends,…
To hear a powerful Committee like DH BIO talking about prolonging to justify the use of such rough and painful measures on vulnerable people, it is really hard to bear. The night before the meeting, I actually had a breakdown moment in my hotel room, by which I broke my laptop. The feelings of despair and powerlessness just came alive again and I panicked. The confrontation with these painful experiences, and the blunt Draft Additional Protocol , the biased ECtHR that fails to address the human rights of persons with psychosocial disabilities. It doesn’t make me feel safe. It was actually a really tough meeting that caused some internal overload.
This is part of having lived experience of coercion. It is a horrible experience that I wish nobody would ever be put through. It cannot be thought of lightly. When I was solitary confined, I wanted to die and I made attempts. I am not the only one. Coercion costs lives! It is torture. It cannot be continued. It has to stop here and now.
DH BIO must do its job and uphold human rights: arrange support and ban coercion.
15 Juni 2019 - 15:24
Timo Kallioaho:Dear Jolijn,
I read through your very detailed report on the DH BIO meeting on the Draft Additional Protocol. Certainly, it was a tough meeting. But I appreciate what you do, Jolijn. I understand well how terrible it has been for you at hospital in the Netherlands because I, personally, had a period of 6 years at a psychiatric hospital (between the years 1986-1992) here in Finland.
Could you say when we could meet each other again? --- I've contacted Mr Paul Bomke organizing the European Empowerment seminar of MHE in Landau, Germany, in September 2019. Do you know about this event? There is one problem: namely MHE will reimburse travel costs for a limited amount of persons and, perhaps, for those members of MHE. I asked Olga and she said that ENUSP is not a member of MHE.
Will you attend this seminar in Landau?
With kind regards, Timo
16 Juni 2019 - 10:46
Jolijn Santegoeds:Dear Timo
Thank you for your reply, and indeed, as (ex)users-survivors, I think we recognize each other’s experiences very deeply, in which lays the power of peer support. I’m confident that we will meet soon again. I will respond to you on email about the MHE empowerment seminar, which may indeed have its limitations, yet efforts are being made to make the best out of it. Let’s hope ENUSP will soon have substantial resources to organize our own empowerment events. And let’s keep on working on the fundraising proposals for ENUSP. We will get there step by step.
21 November 2019 - 22:24
Constantijn Van Rens:Hoi Jolijn,
Wat doe je ontzettend goed werk! Wil me ook graag blijven inzetten om te helpen tegen dwang in de psychiatrie en hoop op een samenwerking. Ben meer dan twintig jaar gedwongen 'behandeld' : gedwongen opsluiting, maanden in isoleercel en dwang depot injecties gedurende vele jaren. Kortom een echte martelin.
Maar nu het volgende..
Ben sinds 1 september 2019 " ontsnapt " uit de ggze en ben nu ondergedoken bij een kennis in het buitenland. Heb een R.M. lopen tot juli 2020 en ook de reclassering wil dat ik contact opneem, anders wordt een voorwaardelijke maatregel te uitvoer gebracht.
Zit nu met mijn handen in het haar wat ik moet of kan doen, aangezien ik nu ook niet meer ingeschreven sta in Nederland en mijn uitkering gaat stoppen. Graag zou ik hulp, informatie hebben hoe ik kan overleven buiten de ggz en zomogelijk buiten Nederland.. Alle hulp en info is welkom.
Graag hoor ik van jou,
Groeten Constantijn van Rens
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