Day 2 ENUSP Empowerment Seminar 2015 Brussels

On Monday 14 December 2015 the ENUSP Empowerment Seminar started at 9.30. It was a day filled with sessions focussed on strategizing the cooperation with other organisations: Mental Health Europe, the European Patients’ Forum, the European Disability Forum and the EU Fundamental Rights Agency.

The day started with a session on the past and current cooperation with several European organizations, and a discussion on ENUSP strategy and potential goals to be achieved with each organization.

First Karl Bach Jensen and Maths Jesperson shared the history of ENUSP with us. In the 1990s several European user organizations started to cooperate, with the support of the Dutch government, and the European Desk was created. The UK based Hamlet Trust provided support to connect with Eastern countries a bit more. By that time Mental Health Europe (MHE) was formed by a group that separated themselves from the World Federation on Mental Health (mainly for the reason that WFMH takes money from pharmaceutical companies). However, in the start the cooperation between MHE and ENUSP wasn’t always fully free from paternalism, but by now, good relations have been established, as illustrated by the fact that MHE is providing support to realize this Empowerment Seminar. Also in regards of advocacy for our human rights ENUSP often cooperates with MHE. Many participants agreed that they experience the cooperation with MHE is pleasant.

In 1996 ENUSP was one of the founding members of the European Disability Forum (EDF), and also back in that time, there has been an intense debate about whether (ex)users/survivors would want to identify with the term “disability”. Eventually, both ENUSP and WNUSP decided to accept the term disability, since the social model of disability makes sense (It is the community that is either disabling or enabling) and the social model of disability gives opportunities to approach the mental health sector from a mainstream human rights perspective (not again segregated).
Since then ENUSP has grown further as a credible and representative user-led European organization, with a growing number of members, and ENUSP is frequently asked to give input in main European and international developments, such as being consulted for various EU programmes, the World Health Organization (WHO), and close cooperation with European NGOs like EDF and MHE.
Several ENUSP members, such as Karl Bach Jensen, Maths Jesperson and Gabor Gombos, were involved via WNUSP in the drafting process of the UN Convention on the Rights of Persons with Disabilities, and they worked closely with Tina Minkowitz, a user/survivor and lawyer who has been of great importance for the UN CRPD text.

Then Gabriela Tanasan continued on the more recent history of ENUSP. Gabriela has been chair of ENUSP several years ago, and has remained actively supporting the board for the years since then, including by taking a coordinating role in organizing several ENUSP events. This is actually the 6th Empowerment Seminar of ENUSP (the others were: Brussels 2009, Thessaloniki 2010, Brussels 2011, Zagreb 2012, Bucharest 2013, (then the GA in Hillerod 2014), and now Brussels 2015). As was said earlier, MHE has been giving support to organize these Empowerment Seminars. The archives of the past communication with MHE are present. However, the archives of the communication with the European Disability Forum (EDF) are not yet in place in the new digital ENUSP archive, which is noted as a point of attention.
Gabriela is also our contact person with the European Patients’ Forum (EPF) and her experiences with this organization are positive, in terms of her being respected as an expert, and also EPF provides a lot of practical support in terms of trainings and toolkits etcetera, which is empowering ENUSP, such as the training course on Communication that John Kidney followed.
Gabriela has followed a training course on Fundraising, to which she was invited by the European Patients’ Forum (EPF). Since then she has been working on a Fundraising Strategy for ENUSP, including identifying potential donor organizations and applications, and the EPF training proved to be of huge beneficence in this regards. So ENUSP has been gaining a lot of practical guidance for capacity building from the cooperation with EPF, and it could be recommended to continue cooperation with EPF.

As a next speaker I briefly shared my view on the cooperation with the European Disability Forum EDF during the past year. I am currently assisting Eric Olsen on behalf of ENUSP with his role in the EDF Board, which means that I observe the EDF board communication to see what is going on. I consider the cooperation with EDF as positive. I experience a very friendly and welcoming atmosphere at EDF. For example, EDF has enabled me to be present in Geneva on behalf of ENUSP during the EU review at the UN CRPD Committee, and they allocated time in the EDF side events in Geneva, to present the ENUSP Submissions (LOI and Shadow Report on the EU). The only small disadvantage is that they are a big organization covering a wide range of different disabilities, which sometimes means that our issues may not always make it to their top priority list directly. However, they do give us a platform, consult us, and are open for our feedback (including on the idea of working more intensively on the Council of Europe affairs), and they clearly make efforts to meaningfully include us. So that is positive. So my recommendation was to keep on engaging with EDF.

During the discussion time the very positive experiences between ENUSP and ENIL (European Network for Independent Living) were mentioned, and we were all inspired by ENILs “Myth buster” awareness glossy, see http://www.enil.eu/wp-content/uploads/2014/12/Myths-Buster-final-spread-A3-WEB.pdf

- MENTAL HEALTH EUROPE
After the coffee break, it was time for our first external speaker, Maria Nyman, Director of Mental Health Europe (MHE, http://www.mhe-sme.org )


Maria first explained the origin and structure of Mental Health Europe, which long ago was the European branch of the World Federation on Mental Health, until the European regional umbrella organization split off because they did not agree to taking money from the pharmaceutical and medical industry as WFMH does, and Mental Health Europe was formed, which is still the only European mental health NGO (together with ENUSP of course) that doesn’t take money from the pharmaceutical companies. MHE has 70 members in 30 countries, of which 27 out of 28 EU Member States. MHE has a variety of members, such as service providers, national advocacy organizations and organizations of users and survivors of psychiatry as well. Two ENUSP board members, Guadelupe Morales and Stephanie Wooley are also board members of MHE. There is a lot of common ground between MHE and ENUSP when it comes to our positions on promoting human rights in the mental health field.
MHE has a small secretariat in Brussels, from which they lobby to the European Commission, the European Parliament and other European bodies, with the goal to put mental health high on their agenda, and to ensure that mental health is mainstreamed in all policies. MHE also provides policy recommendations, such as amendments and position papers. Also, MHE is involved in different European projects to which they give input, such as on research. MHE also makes efforts to raise awareness on mental health, such as by a short video campaign on recovery, for which they are currently interviewing persons with lived experience.
In the past year, MHE has frequently worked alongside ENUSP, for example in the EU review process before the UN CRPD Committee in Geneva, and in the EU Joint Action on Mental Health, several events at the European Commission, and the letter against the Draft Additional Protocol to the Oviedo Convention. There may be further opportunities to cooperate closer in the future, perhaps even in funded joint projects, such as research with universities or so, but this is complicated and would need to be explored further. For now we will anyway keep on flagging each other, MHE and ENUSP, on important moments that need action from our sides, including by seeing how we can cooperate on our common grounds or in coherence wherever this has an added value. MHE is also willing to support another future ENUSP Empowerment Seminar, most likely as co-funding.
ENUSP is very thankful to MHE for its support, including for the presence of Maria Nyman at the ENUSP Empowerment Seminar, and we look forward to further cooperation with MHE.

- EUROPEAN PATIENTS’FORUM
After the lunch, Camille Bullot gave a presentation on behalf of the European Patients’ Forum (EPF, http://www.eu-patient.eu/ ). Many of us immediately noticed some suspicious language and images in the EPF materials, resulting in careful listening by all of us.
EPF was founded in 2003 to enable patient involvement in European policy making. EPFs vision is that everyone should have access to high quality care, and their mission is to ensure that this care is patient driven. EPF is an umbrella organization with member organizations comprising both national umbrella organizations, such as patient platforms which are cross cutting, as well as organizations representing different specific ‘diseases’, such as ENUSP. EPF advocates only on cross cutting issues at the European level, to stimulate a European environment that is more patient-friendly. Since 2008 EPF also started doing research to provide evidence of their positions, such as on integrated care, and on the electronic patient file.
Gabriela Tanasan is the contact person on behalf of ENUSP in EPF, and EPF holds a weekly “virtual coffee” on Skype to engage with each other. In 2014 and 2015 ENUSP has been selected to send a representative to attend capacity building events organized by EPF, such as on Communication and on Fundraising. In EPF there are several member organisation on mental health, such as for example besides ENUSP and MHE, also Gamian Europe and Eufami. EPF welcomes our input on the mental health perspective, and there are plans to focus on mental health during the EPF General Assembly in 2016, for which cooperation can be explored.
Camille proceeded to explain that about 20% of EPFs budget comes from the pharmaceutical and medical industry, and EPF has a policy that says the industry cannot influence how the money is used by EPF, and by having multiple different donors from the pharmaceutical industry, they claim to be able to be independent from their influence.
Camille then explained a bit more on their campaign on patient empowerment, with the aim to stimulate self-management, information to the patient (the doctor is not a priest), and shaping a co-production process of wellbeing. EPF has made a campaign around the letter E, five times E for better health by patient empowerment. It is about (individual) Education, Expertise, and Equality, and (organizational) Experience and (policy) Engagement. There are leaflets, background materials and a toolkit available for the 5E campaign for better health by patient empowerment, including a social media campaign. EPF also has the option to share good practices of patient empowerment, and testimonies via their channels.

Her presentation did spark a critical debate. I asked her why EPF does not include the UN Convention on the Rights of Persons with Disabilities in their work, and why they focus on the argument of ‘cost-reduction’ instead. I also emphasized that the CRPD gives us the right to free choice in health care, which goes further than EPFs terminology of “influence on treatment, better relations with doctors, co-production of wellbeing”. Surprisingly, she replied that she thought that the UN CRPD doesn’t apply to patients with chronic diseases, but only to persons with disabilities, which in her opinion was exclusively a job for the European Disability Forum. She appeared interested when I told her about the social model of disability, and she appeared totally unaware that the CRPD could also be used by the patient movement. I found that lack of information quite surprising, since she was representing such an important European organization.
Katrine Wiedersoe, ENUSP board member elaborated on the importance of choice, since many barriers are paternalistic, also in treatment. There are several fundamentally different approaches to mental health, such as the biomedical model (scientific realism, presuming everything can be fixed by doctors), the constructionist view (presuming everything is based on individual choices) and relational social constructionism (presuming everything is connected to the social and relational dynamics). Empowerment does not mean forcing someone into a certain treatment, but it is about having the choice to get what you prefer for yourself.
Then also Hege Orefellen took the floor to explain the human rights approach in more detail, and elaborated on the right to free and informed consent to any health care treatment, while linking this to the broader understanding of human rights under various UN treaties.

Before the discussion ended, Catherine Naughton of the European Disability Forum (EDF) had arrived, and she was given the floor to react on the remark on the CRPD as supposedly exclusively useful to EDF. Also Catherine Naughton explained that the CRPD does not exclude patients from persons with disabilities, but it is meant to include everyone with support needs. Rather, the CRPD is not adding any new human rights to the spectrum, but it emphasizes in some more detail that the existing mainstream human rights are also applicable to persons with disabilities. The CRPD is about the same human rights that every human being is entitled to, so it definitely also includes patients.
Camille was very open to our feedback and expressed her intention to take our feedback and suggestions back to the office of EPF. It altogether appeared that our differences could be overcome by more awareness raising towards EPF.

- EUROPEAN DISABILITY FORUM
Catherine Naughton then explained a bit more about the European Disability Forum (EDF, http://www.edf-feph.org/ ). EDF is a umbrella organization which aims to give a voice to the 80 million persons with disabilities in Europe.
EDF has 100 members, which are either full members such as national disability councils and European NGOs / DPOs, or observer members (disability councils outside the European Economic Area), who all have 2 votes per organization in EDF. Also, EDF has ordinary members (other European organizations) or associate members (national level organizations) that have a small number of votes in EDF together. The board and executive committee of EDF can only be fulfilled by full members, which are self-representing organizations. EDF has a number of working groups, such as on ICT, transport, independent living and community based services, international cooperation, the UN CRPD, access to health and health stereotypes, persons requiring high level of support, the built environment, European Structural Funds regulations and on women and youth.
EDFs overall budget is about 1,3 million annually, consisting of 80% by EU funding and 20% self-funding, which EDF obtains by membership fees and by co-funding that is being sought for every activity, such as governments’ co-funding for EDFs GA in various countries. The amount of paperwork to be done for EU grants is enormous, such as applying and reporting, and EDF has had extensive auditing visits where EU officials came into the EDF office unannounced and checked all paperwork, also after 7 years. So the paper trail is important to take into account when dealing with EU funding.
About the cooperation between ENUSP and EDF, Eric Olsen was elected onto the EDF Board as a representative of ENUSP, and he still is in the EDF Board. The next elections will take place at the EDF General Assembly in May 2017. Also, ENUSP and EDF cooperated on the EU review-process before the UN CRPD Committee last year, and also many other activities were done in cooperation and coherence, for example ENUSP gave input to several speeches and presentations which were held by EDF at meetings at the EU and the Council of Europe. Also, several proposals and actions by ENUSP were supported by EDF, such as the critical WNUSP/ENUSP response to a detrimental Lancet article on the UN Convention on the Rights of Persons with Disabilities last year, where EDF supported the article written by user/survivors from ENUSP and WNUSP, but unfortunately our submission was not accepted for publication by the Lancet editors.
About the future cooperation, next to continuing the ongoing mutual cooperation and input to advocacy, EDF would like to get training and guidance of ENUSP on the inclusion of (ex) users and survivors in all aspects of the work, including on participation in meetings, to make staff understand what they should take into account in terms of policy and accessibility to facilitate social inclusion. EDF finds it very important to know what persons with psychosocial disabilities need. Point taken by ENUSP.
About funding opportunities, and assistance in funding opportunities, or options for co-funded projects, this could be explored further, although it is really complicated and a lot of work to obtain grants. EDF will take a look at the EU Funding Proposals, which describe calls to apply for money for a certain goal. If a topic is chosen, it is very important to do it really good, including by explaining the added value of the project for the EU. It is important to have the working structures in place in advance, because if the project fails, the funding needs to be paid back. A theme for a joint project could be about ways of decision making, or any topic that is important for all EDF members (as added value for EDF).
Also EDF has provided a training for their members on shadow-reporting to the UN CRPD Committee, and this was a success, and EDF plans to do this training every year, and ENUSP members from countries that are coming up for review by the UN CRPD Committee are eligible to attend these trainings.

Some practical discussion followed about what can be done in terms of joint action against the ‘interpretive declarations and reservations’ that many European countries make upon ratification. What about directly supporting the development of good practices, and to go beyond writing about human rights. How does EDF approach the Calls for Proposals and proposed projects for funding, and which questions and arguments do they take into account to discover potential. And whether there was any specific attention for actions against torture. And about the potential positive impact of research on the implementation of the CRPD and best practices, to show that implementation is possible, which could lower any resistance against the paradigm shift. It was interesting to explore these various themes, and all participants agreed that we would be further exploring the future possibilities of cooperation in joint projects with EDF. Especially since ENUSP currently does not have the capacity to apply for a 80-20 ratio EU funding, since the self-funding of 20% of the budget is problematic for ENUSP.

Around 16.30 we had a coffee break, and then we had another external speaker. It was a long day.

- EU FUNDAMENTAL RIGHTS AGENCY
Henri Nickels of the EU Fundamental Rights Agency (FRA, http://fra.europa.eu/en ) was our next guest.

The EU Fundamental Rights Agency (FRA) is an EU agency that provides evidence based advice, by doing social and legal research on human rights implementation under EU law, such as the EU Charter of Fundamental Rights which is binding on all EU Member States and contains 45 rights. FRA analyses the data of their research, and the findings form their evidence based advice. The social and legal approach is useful for the European Commission, European Parliament, EU Member States and other institutions. The FRA-agency is an independent agency, supported by EU Funding, but without any influence from the European Commission or other institutions. Civil society is represented in FRA in the Fundamental Rights Platform (FRP). ENUSP is already registered in the FRP and it was noted that ENUSPs contact email address needs to be changed. FRA consults the FRP-platform of civil society on their annual work programme and annual report. In the past years, FRA has published several reports that are specific to mental health.

- FRA 2012 report on Involuntary placement and involuntary treatment of persons with mental health problems: http://fra.europa.eu/en/publication/2012/involuntary-placement-and-involuntary-treatment-persons-mental-health-problems
- FRA 2013 report on Legal capacity of persons with intellectual disabilities and persons with mental health problems: http://fra.europa.eu/sites/default/files/legal-capacity-intellectual-disabilities-mental-health-problems.pdf
- FRA 2013 report on Choice and control: the right to independent living – experiences of persons with intellectual disabilities and persons with mental health problems in nine EU Member States:
http://fra.europa.eu/en/publication/2012/choice-and-control-right-independent-living

The current FRA research focusses on more general issues under the UN CRPD, such as the recent 2015 report on violence against children with disabilities: http://fra.europa.eu/en/publication/2015/children-disabilities-violence

CRPD article 19 (living independently and being included in the community) will be the focus of FRA in the next years, aiming to identify the barriers and drivers for deinstitutionalization. The FRA reports are not making a comparison between states, but they aim to make transparent what are the Do’s and Don’ts in terms of policy and practice.
ENUSP could help FRA by for example pointing out where to find practices that are useful to include in the research, which countries, which DPOs, which are the research tools that (ex)users/survivors are familiar with, and which are the specificities to take into account when including (ex)users/survivors in the research.
About the cooperation between FRA and ENUSP. FRA aims to always involve DPOs (Disabled Persons Organizations), in line with the spirit of the UN CRPD. It is impossible to have co-funded or joint projects with ENUSP and FRA, but FRA can be in an Advisory Board of ENUSP projects if that would have an added value for both. Also FRA representatives can be invited to events of DPOs at the national level, of course depending on time and relevance.

Again some practical discussion followed, clarifying the role and scope of FRA’s work. Several ENUSP participants already started to provide useful suggestions for the current research (relevant position papers, such as by Thomas Hammarberg as Commissioner of Human Rights of the Council of Europe on CRPD article 12 and 19, and practices such as the use of Family Group Conferencing for deinstitutionalization of children in Bulgaria). FRAs research is not meant to focus on best or worst practices, but their aim is to understand the barriers and the drivers for human rights implementation in practice.
Some very good critical questions were asked about the definitions of institutionalization and deinstitutionalization in relation to coercion: For example, when someone is forced to take medication conditional to exercising liberty of movement, is this considered “deinstitutionalized” or as institutionalized? Or what about deinstitutionalization without providing any community-based support? ENUSP members recommended FRA to define the concept of deinstitutionalization properly before making any conclusions on what needs to be done. Possibly a focus on human suffering could help to come to a good definition of the concepts.
It was asked whether it would be useful to send for example evidence of the harm done by seclusion to FRA, and the response was slightly positive, although they cannot promise to use it, since that depends on the scope of research, and in that regard also the complexity of authorities plays a role (EU competences or Member States competences. Or shared competence), but nevertheless, information can be useful anyway.

Another question was about what FRA could do against the Draft Additional Protocol of the Oviedo Convention, and we were happy to hear that the FRA agency apparently has sent a response to the Council of Europe Committee on Bioethics last week, criticizing the Draft Additional Protocol that goes against the UN CRPD. FRA will continue to work on awareness raising towards all relevant European institutions and Member States. And Henri Nickels emphasized that there is no single organization that is solely responsible for change, in fact, change comes from everywhere. And if we want change, we must call for it, and we can highlight what policy actors can act upon. It is not the experts on paper, but the movers are the movement. That was a very nice end of the presentation and discussion with FRA.

- INTERNAL DEBRIEFING
After the external speaker had left, we had a debriefing and shared ideas on follow-up with these European organizations and the conclusions of the day.

There was some debate around the European Patients’ Forum (EPF) again, such as the fact that they are taking money from the pharmaceutical companies, and whether ENUSP should be involved with them at all. But eventually, after Gabriela explained that she felt really respected by EPF, and considering the practical support for our capacity building, and the importance of awareness raising from within EPF, and the fact that Camille in no way showed defence to our critical remarks but instead appeared interested, ENUSP decided to continue to engage with EPF on the condition that we really want to see improvements in the language, including human rights. The fact that Gamian Europe used to have a big input in EPF partially explains the suspicious paternalistic language, and maybe we can bring EPF more in coherence with our views. It was nevertheless clear that most of us have mixed feelings when it comes to EPF.

There were no doubts within the ENUSP group on further cooperation with Mental Health Europe (MHE) and the European Disability Forum (EDF), and also cooperation with the EU Fundamental Rights Agency (FRA) was hugely supported, although with FRA we realize that it will be mainly a 1 way contact: giving and not getting.

Then the programme ended, and we had a delicious dinner in a restaurant around the corner.

After the dinner, I decided to join several others who were going into the city centre, to stroll around and visit the Christmas market, having a good time, including tasting some baked mealworms (not bad actually). After that, Stephanie and Liv joined me for a tea in my hotel room, and eventually Liv and I talked and talked for several hours about the ins and outs of the movement, until we suddenly noticed that it was close to 4 AM, and then we went to sleep, knowing that we would have a hard time getting up early the next day, after only a couple of hours of sleep, but anyway, it was totally worth to sacrifice my sleep for this great time with peers.