4. Congress of the European Network of (ex-)Users and Survivors of Psychiatry

Workshop 1. Modern psychiatric treatment: to the better or the worse? The effect of modern atypical neuroleptics and antidepressants on treatment and jurisdiction (Peter Lehmann & Marc Rufer)

Argument 1: Modern psychiatric drugs have become less harmful for the body. For example, they cause less tardive dyskinesia. Especially the atypical neuroleptics for instance clozapine (Leponex), olanzapine (Zyprexa), risperidone (Risperdal), sertindole (Serdolect), zotepine (Nipolept) all are causing less tardive dyskinesia. Atypical antidepressants e.g. fluoxetine (Felicium, Fluctin, Fluctine, Fluocim, Mutan, Prozac), fluvoxamine (Fevarin, Floxyfral) are considered "happy pills" which have low risks. Both of these categories of new psychotropic drugs make it easier for persons to function in their everyday life and this enhances their social life opportunities. Recently drug companies let patients who have had negative experiences from taking traditional psychiatric drugs report and publish their complaints. This technique helps to convince physicians about the positive effects of modern psychiatric drugs and this convinces health insurance companies to fund these more expensive modern psychiatric drugs.

Argument 2: Modern psychiatric drugs cause less motor disturbances, but they are more harmful for the inner Organs, they cause receptor changes too (i.e. chronicle psychosis resp. depression) and raise the potential of dependency – atypical antidepressants as well as neuroleptics. Both groups of psychiatric drugs make it easier to function in everyday life only for a short time, but on middle and long term a person's social possibilities arc doomed to worsen.

Patients who arc reporting their complaints caused by traditional psychiatric drugs are only abused as advertising media for modern psychiatric drugs to increase sales, to give psychiatry a better appearance and – thus the friends of forced treatment are rejoicing – a valid argumentation for judges to ordain inpatient and outpatient forced treatment.

Modern psychiatric drugs' administration: Should the Network try to co-operate with the drug industry (perhaps critically) in future according to argumentation 1? Or should – according to argument 2 – the Network become (still) more cautious about psychiatric drugs? Or will the modern development lead to completely new conclusions and consequences?

(On the basis to let scientifically founded medical aspects slip into the discussion and after the proposal of Peter Lehmann, the board invited Marc Rufer, a physician from Switzerland and a non-(ex-)user/survivor of psychiatry, to facilitate the working-group as a speaker together with him.)

Report

[Marc Rufer could not come, because of virus infection.]

Peter Lehmann introduces this item: He prepared this workshop with a group, but unfortunately he is the only one who is present here. We will discuss the effect of modern atypical neuroleptics and antidepressants on treatment and jurisdiction. At the end of the second part of this workshop we will make some proposals. Peter repeats the arguments in our programme:

Modern psychiatric drugs, the atypical neuroleptics, cause less tardive dyskinesia. Less in comparison with traditional antipsychotic medication like Haldol. Especially the modern atypical antipsychotic drugs for instance Leponex, Zyprexa, Risperdal and Serdolect have fewer visible side effects. Modern atypical antidepressants, like Prozac and Fevarin, also called "happy" pills, are said to have low risks.

But modern psychiatric drugs cause less motor disturbances, are more harmful for the inner organs. They cause receptor changes too and raise dependency. Both categories of new drugs make it easier to function in every day life for a short time, but on middle and long term a persons possibilities are (or may be) doomed to worsen.

During the discussion it becomes clear that people are not properly informed about the risks, also called side effects, of neuroleptic drugs in general. Some neuroleptics are forbidden in some countries, like Semap in Switzerland because of the much higher chance on breast cancer. This has to do with the increased production of the hormone prolactin. This prolactin effect is to be seen at all kinds of neuroleptics, old ones and new ones. In countries like the Netherlands Semap is still used. Some other unwanted effects of neuroleptics are mentioned by the people present, like sexual disturbances and the maligne neuroleptic syndrome. The latter is very severe. Doctors know, but do not speak about it or deny. The end of the "treatment of someone with the maligne syndrome is often electroshock therapy, which does not help.

Another unwanted effect of traditional neuroleptics, the tardive dyskinesia, is traditionally eased by antiparkinson medicines, however these are also harmful for the body. Combinations of pills are often forbidden or should be, because of their unpredictable combined effect. Someone asserts nicotine makes the effect of antiparkinson medicine vanish. One of the first atypical neuroleptics, Leponex (clozapine) may cause agranulocytosis, kind of leukaemia.

There is a lot of money involved in medical industries. Patients are used by pharmaceutical industry to complain in advertising media about traditional drugs in order to increase the sales of the modern ones. Some drugs are mentioned by the people present, like Roxiam, the "Rose without dorns", and Serdolect, which was favourite for some time, but is now banned from the market of causing heart failure. Someone asks what is the difference between the old ones and the new. The old ones relied on blocking dopamine and the new ones, like Risperdal, rely on the combination of blocking dopamine and serotonine at the same time in a smaller dose. The positive effect of those two pills in one is less motor disturbances, less tardive dyskinesia. The danger for the long-term is not known yet. People present think especially forced treatment can be dangerous. Another danger may arise by stopping at once. The treatment produces changes in the nerve system. In general one should be cautious with withdrawal too rapidly, although some people present did succeed in stopping at once without difficulties. A lot of experiences are told now. Some people point out severe neurological side effects. Some people tell that they simply cannot live without pills. It is up to the individual to take them or not, but to make a choice we have to be aware of the possibly outcome of taking them. As some people do not have a real choice, they must be respected in their using.

Concerning damages it has turned out to be very difficult to get access to the court. The proof of the damage is up to the user. Up till now no one has succeeded in proving that the damage was caused by the drug. A comparison with drugs like cigarettes and marihuana follows. There is similarity of psychotropic drugs with nicotine addiction. Cigarettes make you dependent too and nicotine is also harmful for the body. Someone says she can do without neuroleptics, but not without cigarettes. About marihuana is told that users themselves know and admit the noxious working, but they use nevertheless. Someone says: using marihuana helps me to get more feelings. Another tells: after taking several traditional neuroleptics for a long time the new ones feel as an improvement to me. As he does not know the effects on long term, he tried to diminish. He got a relapse, took it again in a higher dose, but tries to diminish again.

There is a sort of paradox in taking pills. You feel sick when you take pills. You do not want to be sick, so you stop taking pills and become sick. Some people state the positive working of a drug, as they feel "I want a drug to feel save when I am desperate." Another: "I would die when I stopped taking drugs, I would kill myself."

Ethical questions arise. Such as: "What is the meaning of giving a medicine for an illness we do not have and which causes Parkinsonism, a second illness?" "Neuroleptics should not be called medicines" and "What is mental illness?". The old question, mental illness does it exists. The suffering does anyway.

As long as there are not many alternative ways available for clients to recover there will be quite a market. There are an increasing number of people taking happy pills in Denmark, but in other countries as well. Children are also "treated" with neuroleptics nowadays, to make them quiet. It should be forbidden, because they are defenceless and not able to consider the risks and to make their own decision.

What can we do? Should the Network (ENUSP) become more involved in medical research? Yes and no get arguments. We can choose as an individual whether we do so or not. We should make use of the "Psychiatric Will" to decide that we do not want to be treated with neuroleptics. Law should respect the Psychiatric Will. We also can write intelligent letters in the newspapers to point out our view and tell our experience.

Someone now tells: the first time I was committed to hospital I certainly was not ill. I only had some problems. The drugs they gave me put another problem to the ones I had. Drugs make you dependent and are directly or indirectly killing. It is up to the person to take drugs or not.

It is important to find out what would have helped you the first time you got in a life crisis. We have to focus on alternatives. "People who listen to my story" e.g. For having a choice we need more alternatives.

Some people think there should be more users and survivors in the admission committees who decide on the admission of these risky "medicines" onto the pharmaceutical market. Users and survivors must play a role in the decision making process involved with drugs licence.

The Network should not take money from medical industries for congresses or whatsoever. We must keep our credibility. By the way is it not time to use other words for deviations called "Mental Illness"?

We should use more money for treatment in another more personal and alternative way. There are good alternative communities on a small scale in different countries already. It is our responsibility to think and work about how to get money for alternatives. In some countries you can ask the government, in other countries Health Insurance Companies.

About the damage done by psychiatric drugs in some cases we think that drug companies have to pay for their crimes. We will have to bring damages to court. If a case is won, the money should be put in a fund used for alternative, drug free help. For coping with life crisis we need care.

Heleen van der Leest

Workshop 2. Challenging the medical model. Our own concepts of understanding ourselves, our needs, our difficulties and strengths ([ex-])user/survivor controlled initiatives, projects, institutions, self-help, spirituality, hearing voices) (Iris Hölling)

The workshop will dwell on the previous work done in the Network (Judi Chamberlin's speech at the Elsinore conference, Kolding Report, workshop on alternatives at the Reading conference, Directory of Alternatives).

It aims at two outcomes:

a) to develop criteria for pilot projects that ENUSP can later on ask financing for and that could be realized as model projects in different countries at the same time such as crazy house, runaway-house, (ex)user/survivor-run crisis centre, drop-in, work or art projects etc. We will discuss issues hike: Which kind of institutions or places do we want for ourselves? Which existing experiences can we rely on?

Here the Directory of Alternatives could play an important role and we should think about how we can make it work.

b) The second aim is to reflect upon a framework for a systematic approach to our own concepts of ourselves. How do we describe and reflect upon our own experiences? Which concepts and theories exist among ourselves? The Hearing Voices network could maybe give us an example. How can we collect and exchange the existing knowledge? How shall the Network work on it?

The workshop is an ambitious project for the little time we have here. One way of looking at this topic is that we do not want to spend our time working to improve psychiatry – because the possibilities of doing so are limited and it is not worth trying to put our energy into it – the limits of what is possible within the system are enormous.

Workshop 3. Internal communication. Communication within the Network (Bev Mills)

In the international arena ENUSP has made itself a well-known and respected NGO. An NGO that has to be counted when it comes to activities and projects where the user/survivor voice is or can be raised in the mental health field.

However the majority of psychiatric users and survivors – members of member associations – do not know that ENUSP even exists! ENUSP has a head but the body is very diminutive. This situation has to be changed.

How can existing tools be developed and how can new tools be created to strengthen the internal communication between desk, board, member associations and individual users and survivors all over Europe?

Which steps have to be taken to further the participation of member associations and individuals in decision-making, representation and development?

Workshop 4. Not on the margin. Empowerment of multiply discriminated groups among (ex-)users/survivors of psychiatry (Virpi Vesterinen and Gábor Gombos)

Many people at the receiving end of psychiatric services arc discriminated against not only because of their psychiatric labels hut also for their gender, sexual preference, national/ethnic identity, religion, social class etc. Belonging to more than one stigmatised minority group can easily mean more prejudice from the society resulting in a more marginalized position in the community. Sometimes the user/survivor movement itself proves insensitive to the problems of these people. The workshop will focus on good practices in the empowerment of (ex-)users/survivors suffering from multiply discrimination. Legal and social aspects will also be discussed. Recommendations will be made to develop policies for more efficient empowerment and less marginalisation. Antidiscriminatory policies in the user/survivor movement and in ENUSP will be investigated and challenged.

Recommendations for a less discriminatory European user/survivor movement are an expected outcome of the workgroup.

Report

Background

Many people at the receiving end of psychiatric services are discriminated against not only because of their psychiatric labels but also for their gender, sexual preference, national/ethnic identity, religion, social class etc. Belonging to more than one stigmatised minority group can easily mean more prejudice from the society resulting in a more marginalized position in the community. Sometimes the user/survivor movement itself proves insensitive to the problems of these people.

The statutes of the European Network of (ex-)Users and Survivors of Psychiatry have a stipulation of non-discrimination (Article 19) saying: "The federation is not allowed to discriminate concerning race, nationality, minority, sex, personal circumstances or basing itself on utterances, convictions and objectives, political convictions of sexual preference..." But does it really mean that all user/survivors have equal opportunities in ENUSP in practice?

The workshop

Participants of the workshop decided that they would select a few areas where ENUSP should follow a more definite and better developed antidiscriminatory policy. Instead of getting lost in complaining about discrimination in general we wanted to come out with concrete proposals that could contribute to the ENUSP action plan for the coming years.

The first part of the workshop was dedicated to women's issues. Virpi Vesterinen gave a brief review on the problems women often meet in psychiatry. Forced sterilization, abortion are still frequent in some European countries. Sexual violence can often be the cause of psychiatric hospitalisation and too often women are sexually abused in the psychiatric institutions. Psychiatrically labelled women with children can loose their right for mothering. Instead of providing support for mothers in mental distress psychiatry separate children from their mothers, years later this can lead to emotional/mental problems in the next generation.

Most women are not educated and empowered enough to fight successfully for their rights. Up to now there is no Women (ex-)User/Survivor network on a European level.

Gloria Brown emphasized that ENUSP should develop its own equal opportunities policy for women. Women should be asked about their needs and ENUSP should support them. If ENUSP would have its own policy that can be used as a valuable argument when ENUSP is to campaign for women's rights on the national/government or international level or when we challenge everyday violence of human rights.

Milena Gueorguieva spoke about the differences in the position of women in various countries and cultures. In some cultures women are not allowed to speak at all when men are present. Specific forms of abuse can also depend on the country.

Gloria Brown suggested that ENUSP should speak in public about wrong practices in various countries. ENUSP also should educate decision-makers about the importance of support for women. Gloria found that cost effectiveness of proper support for women is a valuable argument in our economy-oriented age. If women are provided with support they really need, they can function in everyday life well, they cook; look after children etc. and thus a lot of money can be saved.

Concluding this part of the workshop Virpi Vesterinen suggested that ENUSP should set up a women only task group. That group will provide women with a safe and confidential place to start the work on the ENUSP policy on equalisation of opportunities of women. All participants agreed. Gloria Brown added that ENUSP should represent women (ex-)user/survivor issues in the international arena. Everybody agreed that these two proposals should be forwarded to the plenary session.

In the second part of the workshop we formulated two principles:

1. If you don't ask people about their needs you don't know them.

2. Discrimination is in subtleties.

The lack of information and knowledge can often result in misunderstanding and discrimination. Discrimination is not necessarily intentional. Up to now ENUSP has been a "too white" organisation. In many national or local user/survivor associations people from minorities, which are over represented in psychiatry, are underrepresented.

Language itself can be discriminatory. Most (ex-)users/survivors from East European or Mediterranean countries do not speak English. Until ENUSP can provide interpretation or several working languages these friends are discriminated against. This is obviously not intentional: interpretation is very costly and ENUSP has had a very limited budget for its conferences. ENUSP has always been aware of the language problem and, when financial circumstances permitted, used simultaneous interpretation. The coming board should not forget about this issue. Although, this remark is not a concrete proposal, we forwarded it to the plenary session.

Another discrimination independent of the Network is that people from certain East European countries need visa to travel to EU. Getting visa needs a long time and is expensive (its cost is in the range of one month income). People from those countries need more funding and they need the invitation letter more in advance if we do not want them to be excluded from the ENUSP events.

This latter phenomenon should raise our consciousness on certain discriminations where ENUSP can be a successful advocate only if it will have a dedicated legal and fundraising expert on its disposal. With that proposal we concluded the workshop.

Gábor Gombos

Workshop 5. A place in the real society a working place....... Provisions made for sociotherapeutic....... Introduction working increases....... (Stefania Dei, Mary Nettle and Brigitte Siebrasse)

[Brigitte Siebrasse called in sick for the Luxemburg-Conference (flu) and in consequence unfortunately could not attend the workshop.]

Necessary steps need to make a prompt replay to the working problems for the users, ex-users and survivors of psychiatry. Brigitte's statement should have been:

"I deny that most users and ex-users stand a good chance to find a decent job on the first job market. General unemployment has increased drastically. I demand a solid pension for all ex-users. Working cannot be a value for everyone. It must be necessary to assist those who hate the job-world. Social projects, invested by governments, run by ex-users, should better everyday life for those users and ex-users who want to work. Barter (in German language: Tauschbörse) are needed very much, if ex-users get a chance to be included in social exchange and communication. Good, creative projects like pubs, restaurants, removal firms etc. must be installed in order to employ users and ex-users and to make sure, that those projects are run by ex-users. (Model for this is the user-run Hotel Stenbock in Helsingör, Sweden.) These governmental investments would help to self-empower disheartened users and ex-users and make them stay away from psychiatry every year. Not to mention that social security is necessary also."

A small group of people met and talked about their own experiences of stigma and discrimination in the workplace and what would help to change that. I feel that it was agreed that being able to work was important but it was difficult to escape the comfort of being in the welfare system with an inadequate but guaranteed income for a job which may not work out. It was also difficult to find a job that reflected your abilities, many people with mental health problems have university degrees but the only jobs on offer are unskilled and low paid often less than welfare benefits.

Workshop 6. Non-verbal communication (Réne van der Male & David Warner)

No Report available