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Users and Survivors of Psychiatry on the International Stage

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Users and Survivors of Psychiatry on the International Stage Peter Lehmann “Nothing about us without us.” Due to the fact that there is room for reform-psychiatry as well as anti-psychiatric oriented organization in the network, it is a model for tol- Users and Survivors of Psychiatry erance and democracy. Presently (December 2008), on the International Stage: a ENUSP has 47 national, 12 regional, 21 local and 5 indi- shnapshot 1 vidual members in 39 European countries (see the orga- nigram for more details). The last congress of the European Network of (ex-) Users and Survivors of Psychiatry (ENUSP) and the World ENUSP without Big Pharma Money Network of Users and Survivors of Psychiatry (WNUSP) ENUSP rejects money from big pharmaceutical compa- in Vejle in Denmark was held in 2004. There is a lot of in- nies on principle and it supports the position paper by the formation pertaining to this congress on the internet at the European Public Health Alliance from 2001 about the in- website www.enusp.org/congresses/vejle/index. Since dependence of patient organizations. This says that orga- then, a lot of interesting things have occurred for those nizations that accept funds from the pharmaceutical in- users and survivors of psychiatry and their supporters dustry should, at a minimum, determine an upper limit to who respect the right of self-determination. This view is the proportion of industry sponsorship and their total in- not realized sufficiently or made use of by the national come. They should also determine the role of the spon- self-help groups nor by reform psychiatry. This overview soring body in relation to sponsored projects and to the should help the situation. It does not claim to cover all ac- organization as a whole in their statutes (see tivities; some topics can be addressed only very briefly. www.enusp.org/documents/epha-participation). There are four groups, which should be mentioned in the European arena regarding users and survivors of psychia- Consensus with ENUSP? try. A fifth group solely claims to represent them. ENUSP, as an independent federation, which is exclu- sively orientated on the interests of users and survivors of European Network of (ex-) Users and psychiatry, is criticized by friends of biological psychia- Survivors of Psychiatry (ENUSP) try for supporting extreme positions. As an example: in April 1999, I (Peter Lehmann) took part in the conference In 1991, representatives of independent groups founded “Balancing Mental Health Promotion and Mental Health ENUSP (www.enusp.org), a federation of member orga- Care” in Brussels, an event organized by the WHO and nizations. Central duties of the network are to influence the European Commission (the Executor of the decisions decisions made in psychiatry on a European level, and to passed by the European Council of Ministers and the Eu- procure an improvement of the rights, the treatment and ropean Parliament). Along with an estimated 70 govern- living situation of the users and survivors of psychiatry. ment officials, people active in psychiatry and other rep- The network encourages international exchange of infor- resentatives from organizations of interested parties in mation among users and survivors of psychiatry. It is con- the psychosocial sector, I was invited as a representative cerned with social issues, the right for accommodation, of the European Network of (ex-) Users and Survivors of work and income. Further concerns are human rights in- Psychiatry and was asked to present a paper on the posi- dependent of psychiatric diagnoses, the right for drug- tion of the ENUSP. I asked for the support of self-help free help, the upholding of psychiatric advanced direc- and non-medical approaches, the active involvement of tives, the quality of psychiatric treatment (as well as the users and survivors of psychiatry in political decisions on mode of action and effect of psychiatric drugs and shock psychiatry (in view of strengthening human rights) and administration) and with alternatives beyond psychiatry. for emphasis to be placed on the freedom of choice of The network has advisory functions towards the Euro- treatment. The first reaction was that I was immediately pean Commission and the World Health Organisation, reprimanded as being a radical supporter of anti-psychia- and it is member of different international organisations, try. Not one single psychiatrist nor one representative of for example the European Disability Forum, which is ac- the relatives’ associations (sponsored by the pharmaceu- tive against all forms of discrimination under the motto tical industry) supported the ENUSP position. It was only 1 This paper reflects the personal view of the author, not the view of the whole ENUSP board. Some board members feel it has a negative tone when ENUSP board needs to be positive about the good things that have happened in the last few years. Some do not believe GAMIAN is a threat, and Mental Health Europe should include everyone. Some think the paper written this way could be damaging the credibility of the ENUSP board. Some find it very long and focussing more on what the others do than what the ENUSP board is doing and therefore the paper inappropriate for representing ENUSP members. On the other hand, 2 One exception is the project VALUE+ co-or- dinated by the European Patient Forum (EPF), ENUSP being one of the co-founders of EPF. ENUSP had an active role in developing a re- search proposal, which turned out to be suc- cessful and has received funding for 2008- 2010. In co-operation with different partners in VALUE+,the extent and the value of patient involvement in different EU public health pro- jects and the necessity and value of the in- volvement of users and survivors of psychiatry in the field of mental health, are explored (www.eu-patient.eu/projects/valueplus/index. php). ENUSP also has a consultation role in another EU research project (ITHACA) on human rights and physical health of residents in psy- chiatry and social care institutions in 16 Euro- pean countries. ITHACA will examine six in- stitutions per country with the monitoring tool based on the UN convention on rights of peo- ple with disabilities. One board member of ENUSP is responsible for consultation with service users/survivors on all the ITHACA sites in the process of the tool development. The project ITHACA will end in 2010 (www.ithaca-study.eu). Global Alliance of Mental Illness Advocacy Networks (GAMIAN- Fig. 1: Anti-discrimination poster Europe) after intervention of the Chair of the conference and rep- GAMIAN-Europe is, in contrast, a completely resentative of the European Commission, Alexandre different group. They promote themselves as Berlin, who apparently did not find the proposals so “... essentially a pan-European patient driven fed- strange, that they were included in the consensus paper eration of national organisations across Europe (www.enusp.org/consensus). assisting people affected by mental illness, either as a sufferer or as a carer. We operate within the Research with ENUSP from the Perspective of Users WHO European area and cover the whole range of and Survivors of Psychiatry mental illnesses. Some of the national organisa- ENUSP has recently been invited to partake in different tions are disease specific, whilst others are um- European research projects. Most of these invitations are brella groups covering the whole spectrum of psy- not offering a serious working partnership but rather chiatry in their country.” show how attractive it has become to have the “European Central goals of GAMIAN-Europe are user voice” as an addition in various research applica- “... to improve the availability, accessibility and tions. The board of ENUSP refuses superficial roles and quality of treatment for all psychiatric disorders, last minute partnership offers in projects, which are not ... to reduce stigma, prejudice, ignorance and mis- really open for substantial changes in their research information surrounding mental illness, ... to pro- designs. mote a positive message that mental illness can be treated effectively by a variety of means.” some think it is important to put ENUSP in the wider context of the movement in general and that it is important to retain our own integrity and independence even while working with others. 3 GAMIAN and Big Pharma Money ENUSP board, is one of the adopted WNUSP board- GAMIAN-Europe is almost solely financed by the members, Iris Hölling and Karl Bach Jensen represent pharmaceutical companies. In 2007 for example, 88 Europe on the WNUSP board. % (= € 102,524) of their revenue came from the com- panies GlaxoSmithKline, Eli Lilly Benelux, Orga- Mental Health Europe (MHE) non and Pfizer Europe. While it is considered a scan- MHE (www.mhe-sme.org) is the European umbrella or- dal when branches of production companies like ganization of non-governmental psychosocial organiza- Siemens finance counter trade-unions, in the tions, which, according to their own promotion, psychiatric field it is considered honourable when “... represent associations, organizations and indi- Big Pharma finances compliant patient organisa- viduals active in the field of mental health and tions. Established in Brussels, GAMIAN is helped well-being in Europe, including (ex)users of men- by its proximity to the administration of the Euro- tal health services, volunteers and professionals of pean Union, in order to get involved in programs. many disciplines.” The president Dolores Gauci, a social worker from Users and survivors of psychiatry are not represented at Malta, attaches great importance to her partnership decision making level within MHE. So the suspicion ex- with the European Federation of Pharmaceutical In- ists, that within MHE there is a biased view on users and dustries and Associations (www.gamian.eu). How survivors of psychiatry who represent themselves ade- close GAMIAN is co-operating with Big Pharma quately; or else the statement is simply due to the fact that you can read in its board-report on the internet (see organisations have to apply also as “a representative of www.gamian.eu/israel08/board_report.doc); there the users and survivors of psychiatry” in order to be able you can identify some ways in which the EU institu- to receive EU grants.
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