CoE meeting on Draft Additional Protocol - Reisverslag uit Straatsburg, Frankrijk van Jolijn Santegoeds - CoE meeting on Draft Additional Protocol - Reisverslag uit Straatsburg, Frankrijk van Jolijn Santegoeds -

CoE meeting on Draft Additional Protocol

Door: Jolijn Santegoeds

Blijf op de hoogte en volg Jolijn

09 Juni 2017 | Frankrijk, Straatsburg

On Tuesday evening 6 June 2017, I travelled to Strasbourg, where I arrived with some delay. After an expensive taxi-ride (since there was no public transport after 23.00) I had a rest at the Adonis Hotel.

On Friday 7 June 2017, there was an important meeting at the Council of Europe: the plenary meeting of the Committee on Bioethics (DH-BIO), to discuss the “Draft Additional Protocol to the Oviedo Convention on Human Rights and Biomedicine - on the protection of the human rights and dignity of persons with mental disorders with regard to involuntary placement and involuntary treatment” (also see: ). Topics of the meeting were: Examination of the draft Additional Protocol revised by the Drafting Group in the light of the comments made during the public consultation and by delegations, and: Exchange of views on the further organisation of the drafting process.

The meeting was held in room G.3 of the Agora building, Council of Europe in Strasbourg. There were many country-representatives in the room, and in the back, there was a reserved space for the representatives of INGO’s (International Non-Governmental Organizations). There were only 2 INGO’s represented: Rehabilitation International (RI), and the European Disability Forum (EDF, ).
I was part of the delegation of EDF, representing ENUSP (European Network of (Ex) Users and Survivors of Psychiatry, ). ENUSP is a member of EDF. I was there together with Alva Finn (Mental Health Europe) and Pat Clarke (vice-president of EDF), and we had aligned our views and presentations in advance, in order to come with a solid joint position against the Draft Additional Protocol. It was my first time to join a meeting at the Council of Europe.

The meeting started at 9 AM. I got in a few minutes late, because the entrance staff couldn’t find my badge. The general introduction had already started when I walked in.

The latest changes to the Draft Additional Protocol were summarized in the order of the document: rearranging the order of topics in the preamble, adding that alternatives are important, a number of changes in terminology (considering ICD-10 standards), specifying that “mental disorder alone” cannot be a reason for involuntary placement, some changes to the parts on “legality, proportionality and necessity”, highlighting there is still some discussion on the details regarding “person of trust” and “legal assistance”, as well as on the definition of “criteria for involuntary treatment”(chapter 3) where ‘therapeutic purpose’ has been added. Also some changes had been made to the articles on “Standard procedures”, and discussion remains on ‘who should do the second opinion’. Maximum terms have been added (after which renewal of the measures can take place). A chapter on Seclusion and Restraint is added, aligned with the standards of the CPT (European Committee on the Prevention of Torture), and discussion remains on setting standards on “information and communication” as well as on the articles on “complaint procedures”, “record-keeping” and “monitoring”.

Within 5 minutes of being present, I was already triggered by many things that had been said, which clash with human rights standards, as well as with modern views on quality of mental health care, and frankly, I was shocked by the shallowness of the language used.

The chair then gave the floor to the representatives of INGO’s to introduce themselves.
The first speaker was Pat Clarke, who introduced the European Disability Forum (EDF) and stated that the Draft Additional Protocol is clashing with the letter and spirit of the UN Convention on the Rights of Persons with Disabilities (UN CRPD), especially with articles 14 (liberty), 15 (freedom from torture), 17 (right to integrity), and 25 (right to health). He also highlighted the need for inviting to this meeting the persons who are directly affected by these measures and protocols, which is why EDF has included representatives of ENUSP and MHE in the delegation, as the voice of persons directly affected.

Alva Finn then presented the joint letter which had been prepared by ENUSP and MHE together. See the letter here:

Then it was my turn to speak. I introduced ENUSP, and stated: We are talking about horrible measures here, while mental health care is supposed to lead to wellbeing and recovery. Forced measures lead exactly to the opposite effect: they are horrible, even traumatizing, and they actually disable care by undermining meaningful relations and causing fear and distance. These practices have got nothing to do with mental health care or human rights, and they have to stop.
Already decades ago, in the MI-Principles in 1991, it was acknowledged that forced measures do NOT have any therapeutic beneficence in itself, which is why these measures are positioned as a last resort. Nevertheless, in many places there are no alternatives in place, leading to widespread use of forced measures, which could be prevented by organizing appropriate support in line with the UN CRPD. The “first resorts” need to be put in place.
Also the UN CRPD recognizes the need for an absolute prohibition of forced measures in mental health care, and calls for a global paradigm shift in the attitudes towards persons with psychosocial and other disabilities since 2006. The new understandings need to be fostered, and this may not go in a linear pace, similarly to other human rights themes, such as for example: Initially there were also questions whether women would be able to live independently, but it proves this is possible when the community supports this. Similarly, modern times prove that persons with Down Syndrome can participate in the community, with support. And now we, persons with psychosocial disabilities are also liberated by UN CRPD, and it is time to ensure our rights now. The Council of Europe should show leadership and give guidance to the implementation of this change throughout Europe. The Draft Additional Protocol needs to disappear. What is needed, is to organize the first resorts, not the last resorts.

The representatives of Rehabilitation International (RI) supported the position that it is needed to organize first resorts, not last resorts.

Then the representative of the Parliamentary Assembly of the Council of Europe (PACE) highlighted that the Parliamentary Assembly had already in 2016 explicitly requested the Bioethics Committee to withdraw the Draft Additional Protocol, also see: . PACE is preparing a new motion, and has appointed a new rapporteur to engage with the Bioethics Committee. She stressed that the credibility of the Council of Europe is at stake. “The way to hell is paved with good intentions”. The Draft Additional Protocol is incompatible with the UN Convention on the Rights of Persons with Disabilities (UN CRPD), and it does not serve its claimed purpose to protect persons with psychosocial disabilities.

The chair of the meeting then explained that the Draft Additional Protocol was drafted after a survey regarding REC2004/10, which pointed at legal gaps concerning the application of involuntary measures. Due to the concerns about the lack of safeguards, the Bioethics Committee has drafted the protocol. “The first resorts are also necessary, but fall under another body”. Also it was said: “The comments of the public consultation have all been taken into account, and have been analysed. However, the Bioethics Committee has decided to continue with the Draft Additional Protocol”

Then the various country-representatives, which together form the Bioethics Committee, started discussing the text of the Draft Additional Protocol.
Several speakers expressed their appreciation for the input by the INGO’s / DPO’s (Disabled People’s Organizations).
However, it was clear that, despite all criticism, the Bioethics Committee still plans to proceed with the Draft Additional Protocol.

The reasoning of Bioethics Committee is basically: “that Central and Eastern European Countries need these legislative frames to access justice at the European Court, since national laws may not be in place or be flawed, and then an additional legal framework with basic standards is needed”. The representative of the secretariat of the European Committee on the Prevention of Torture (CPT) stated “we know force is happening so we need safeguards for minimal quality” .

I was shocked. How can they disregard the UN Convention on the Rights of Persons with Disabilities, which already provides the basic human rights standards? In light of the UN CRPD, every act of non-consensual placement and treatment should be seen as a human rights violation, which gives people in countries that have ratified the UN CRPD (nearly all of Europe) relatively strong grounds to advocate for their rights, and against forced measures. The UN CRPD also applies to Central and Eastern Europe. It is odd that their reasoning implicitly suggests that no cases from Central and European countries are ever submitted to the European Court of Human Rights, yet it is merely the European Court itself that rejects these cases, on the basis of legislation that allows such practices, such as the doctrine of article 5.1.e, which is now again reinforced by the language in the Draft Additional Protocol.
It really makes no sense, that the Bioethics Committee suggests that a document with inferior standards would improve the rights of persons in Central and Eastern Europe. They should better elaborate on the standards of the UN CRPD, and give guidance to the implementation across Member States.

I was quite shocked to see that the Draft Additional Protocol was basically composed and changed on the basis of ad hoc remarks coming from the floor, without further evidence (to me this appears similar to how the Diagnostic and Statistical Manual of Mental Disorders (DSM) is made up). They seemed to have no clue that human rights are actually binding standards, and that it would be their job to secure these… And they also seemed to have no idea about true care and support for mental health, but appeared stuck in medical model views. I wonder how many of them actually spent more than a visit in a psychiatric hospital. I bet very few of them.
It was really shocking to see that “this is how my rights are made”. The Bioethics Committee hadn’t event taken the efforts to invite real experts on the matter (ENUSP and MHE were only there thanks to the courtesy of EDF). While it is such a delicate matter.

It was equally shocking that the Bioethics Committee was taking existing practices as a starting point for identifying a “baseline” of what they call “rights” that should be seen as a minimum standard. So this obviously won’t bring change in practices. Many times it was said “this particular construction may not always be practically feasible, let’s change it and soften the rules”. The “human rights” they were discussing eroded and deformed by the minute. It was really unbelievable.

Obviously, this Draft Additional Protocol is very harmful to the rights of persons with psychosocial disabilities, since it means that significantly lower standards would be applied, instead of the standards of the UN Convention on the Rights of Persons with Disabilities, which is the modern and universally accepted baseline for human rights in this field since 2006.
How can they not see this? Or do they do this deliberately? I don’t know.

At some point the chair explained that the Draft Additional Protocol is “not against the CRPD”, but is should be seen as minimal standards, to give “rights” to people who are currently subjected to these measures. However, this makes no sense.

So, during the meeting, the country-representatives of the Bioethics Committee bargained about words and terminology of the Draft Additional Protocol, starting with the “person of trust”: is it a guardian, a legal representative, or an individual supports person? based on choice or appointed by a system? How much “communication rights” does a person of trust have? What if the person of choice is not in the “best interest” of the patient? Various country-representatives described the practices in their countries, and there was a little bit of variety of opinions on what a “person of trust” should entail. Mostly, the language used was very paternalistic and stigmatizing (medical model oriented). This seemed to be the type of discussion envisioned at this meeting. The Bioethics Committee appeared unwilling to leave their self-defined margins of discussion.

But especially Alva (MHE) and I (ENUSP) kept on raising our hands to make interventions at various points in the debate, without suggesting that improvements to this text could fix the errors. We chose to expose the overarching principles, and not endorsing any part of the Draft Additional Protocol.

The discussion on terminology continued : whether it should be appointing/consulting/accessing a lawyer, and on formulations regarding the “least restrictive option” and that “alternatives must have been tried”. Someone made a good analysis of how a lack of resources is responsible for a lack of “first resorts”, leading to a high use of “last resorts”. Basically everyone agreed that this lack of appropriate care should be fought against, but at another occasion. Perhaps the principle could be addressed in the preamble firmly. But soon the discussion again went down to the level of “but in some situations it may not be practical to try less restrictive options”…

Someone then added that the treatments must be “effective and safe”. Alva Finn (MHE) highlighted that there is growing evidence that psychiatric medication is unsafe, with side-effects that are harmful to one’s health. The chair then said: “Medication always has side-effects, but that is no reason to stop using it. A doctor can judge whether the risks and benefits are balanced”. Then I responded: "The right to health implies choice". A discussion followed on choice and “incapacity / impaired decision making”. A philosophical country-representative said: “free choice does not exist”.

Again I made an intervention, and stated that in dealing with crisis-situations there are more options than only “black & white” ; force or neglect. For example, by preventing mental health problems and crisis in an early stage, also forced interventions can be prevented. And also, there are alternative ways of dealing with crisis-situations, such as non-violent de-escalation and other non-violent approaches. In this meeting, I sense that involuntary measures still seem to be considered as “effective treatments” which is not the case. The practice of involuntary measures in mental health care is not evidence based, nor based on human rights, but dates from centuries ago, prior to human rights even came to existence. In fact, involuntary measures are more like a “bad habit”. And since the past decades there is even scientific evidence showing that coercion is counter-effective. The time to stop these practices is NOW, which is one of the reasons why the UN CRPD explicitly raises attention to this topic.

The chair responded: “The protocol is not against the CRPD. But still, no country has implemented the standards of the UN CRPD yet. Forced measures are a reality, so we need safeguards”. She added: “And we know that forced treatments are saving lives, and the evidence about efficacy and safety need to be collected”.

Then the floor was given to the country-representatives again, for their discussion on the terminology of the Draft Additional Protocol. I felt like I was sitting next to an isolated bubble. More like a witness than a meaningful expert-participant.

The discussion went on about the language in their sentence about “alternatives”. Another 30 minutes were invested in useless language of a useless Protocol, at the cost of real meaningful work they could have done as a Committee that holds powers. It makes me angry and sad. Such a waste of potential.

During the lunchbreak, I met Martha, a nice young woman who works with youth, and we had a very interesting conversation on youth participation, and about the credibility of European actors which actually are not aligned (such as on the one hand: the EU has stopped the European funding to psychiatric institutions, since they don’t want to fund human rights violations – yet the Council of Europe now drafts a protocol on “involuntary placement”, fully the opposite of each other). In this way, the European institutions are not credible as a leader, and not appealing to be involved in.

At 15.00 the (delayed) lunch break was finished and the meeting continued with the discussion on terminology regarding principles and criteria for “alternatives” and “last resort”. It was a long discussion that was basically going nowhere.
I suggested that they could perhaps take a look at the MI-principles of past century for some inspiration, since there is a significant overlap (or maybe the MI-principles are even of higher standard that the Draft Additional Protocol actually)….

The MI-principles, which have the “last resort-approach” date from 1991. The UN CRPD dates from 2006. Now it is 2017. It is unacceptable that the Bioethics Committee is now discussing guidelines on the USE of seclusion and restraints.

Then the topic of “seclusion and restraint” (Chapter 5) was opened up for discussion.
First a representative of the secretariat of the European Committee on the Prevention of Torture (CPT) gave an introduction to the (new) standards of the CPT regarding seclusion and restraints (also see )
He stated that “CPT considers seclusion and restraints may be necessary in extreme situations, for the protection of the person or others. However, conditions may have the risk to amount to inhuman or degrading treatment. There are cases where patients have died from seclusion or restraints. Visits to hospitals show big differences, even within different wards of the same hospital. Often there is a lack of registration. “Fundamental safeguards are needed”. He suggested that permanent presence of staff during the use of restraints, to monitor safety, would have the additional benefit of “building a relation with the patient”.

This remark made me furious, and I raised my hand and stated : From experience, I know that this scenario is very degrading. Can you imagine, being tied up to a bed, and then there is someone in the room watching you. That is very degrading in itself, and when you ask ”please untie me”, the person says “no”. That is horribly degrading. That doesn’t lead to trust or relationships. Relationships cannot be produced under force, as applies to any relation, for example sexual relations.
I felt that these words were heard by some people.

Other country-representatives expressed that they were happy to see that the Draft Additional Protocol is being brought in line with CPT standards.

The country-representatives went back to discussing their margins, “should a doctor decide on seclusion? Or a nurse?” ... “and convenience should not be a reason for seclusion”.. “who should be notified of seclusion?”.. “what if the director of the institution is not a health care expert but an economic manager”...”Data collection and overview may be easy if digitalized”… “Explanatory reports have a different status in different countries”…

Around 16.00 PM I had to leave the meeting, to go back to the airport and get my flight. On the meeting programme it said that also 2 other items would be discussed in the afternoon, so I knew I was missing just a little bit of the end of this debate. The Draft Additional Protocol will be placed on the agenda of the next plenary meeting of the Bioethics Committee, to be held in October 2017, directly after the 20th anniversary of the Oviedo Convention.
The Bioethics Committee stated its willingness to invite us (the INGO representatives present) to further discussions and developments on the Draft Additional Protocol, so I am planning to be at the next session again.

It hadn’t been an easy meeting, but I am still glad I was there to speak out against this horrible Draft Additional Protocol. It is a true nightmare if this gets through, since it would put a brake on the human rights of persons with psychosocial (and intellectual) disabilities in Europe, and take us back to the past century… what a horror! This issue of forced treatments is far too severe to be treated this unprofessionally. I am still angry and sad about it, and disappointed.

But on the positive side, I did get a number of positive responses to my contribution, and I shared some business cards. So there were also some persons open to my views. It’s a start. I will keep on doing my best to stop this horrible Draft Additional Protocol.

It was somewhat ironic and disturbing, that the meeting was held directly next to the building of the European Court of Human Rights, which is located opposite to the Agora Building of the Council of Europe, where I had my meeting. In fact, to me the buildings of the European Court (and the Council of Europe in general) remain symbolic for exclusion, since their laws and judgements generally facilitate coercion, rather than banning these. (the doctrine of the European Convention on Human Rights article 5.1.e). They talk about rights, but they have no clue about reality. My personal case illustrates that even with many guidelines for registration of coercion (comparable to the “safeguards” in the Draft Additional Protocol), access to justice is still not secured.

Probably a big awareness raising campaign is needed to change the paradigm at these Council of Europe-mechanisms, and opposing the Draft Additional Protocol is one step. My personal case is another step.

It was quite intense to walk so nearby the European Court of Human Rights, which gives me hopes and fears, especially now with my own case. Will our rights ever be accessible? I don’t know. But I consider myself blessed to have found international support to help me with my case. That gave me some peace of mind.

I spent less than 24 hours in Strasbourg, yet it was quite intense. It is likely that this won’t be my last visit to Strasbourg…. I will be back. Hasta la Vista ;)

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