|published in: Eero Lahtinen (Ed.): "Mental
Health Promotion on the European Agenda. Report from a Consultative
Meeting, 15-16 January 1998, Helsinki, Finland" ("Themes
from Finland", No. 4/1998), Helsinki: STAKES Publications
1998, pp. 63-68. Italian
Perspectives of (ex-) Users and Survivors of Psychiatry
In the process of promoting mental health in Europe, people who
have experienced psychiatric diagnosis and treatment as helpful
in their specific situation must be heard, but so must those who
have experienced them as a danger for their health and life. The
use of psychiatric drugs and electroshocks in particular enhanceunintentionallymarginalisation
processes, even if they are administered within the framework
of medical treatment and care. This marginalisation means an increase
in the number of disability pensions. The paper makes a plea for
the possibility of meaningful participationin the situation of
virtual exclusionfor (ex-) users and survivors in the promotion
of mental health and in the prevention and treatment of mental
illness. The inclusion of their experiences, interests and innovative
approaches is necessary, but cannot be realised without funding
and the right to self-determination, to respect and to appropriate
1. Actual forms of marginalisation processes within the framework
of health promotion
A wide range of perspectives have been highlighted by the European
Network of (ex-) users and Survivors of Psychiatry. The term "user"
refers to people who have mainly experienced psychiatric diagnosis
and treatment as helpful in their specific situation. The term
"survivor" in turn refers to those who have mainly experienced
psychiatric diagnosis and treatment as posing a danger to their
health and life. These definitions are often misunderstood: to
"survive psychiatry" does not mean that psychiatrists
are being accused of trying to intentionally maltreat or kill
people; but it does mean that diagnoses such as "schizophrenia"
and "psychosis". which very often have a depressing
and stigmatising effect, leading to resignation and chronic hospitalisation,
must be prevented and that drug-effects such as neuroleptic malignant
syndrome, tardive dyskinesia, febrile hyperthermia, pneumonia,
asphyxia and other dystonic or epileptic attacks, which can pose
a danger to health and sometimes even cause death, have to be
survived. The unifying element in the European Network is dissatisfaction
with the psychiatric system. This again does not deny problems
that have to do with psychosocial stress or with mental ill-health
and mental disorders; nor does it deny that some of the treated
persons are fully satisfied with the treatment.
The report "Promotion of mental health on the European agenda"
states that "many actual forms of professional action even
if they happen in the framework of health promotion might evenunintentionallyenhance
marginalisation processes" (Lehtinen et al. 1997). According
to thousands of reports, psychiatric treatment, especially electroshock
and psychiatric drugs such as neuroleptics and antidepressants,
can cause a deterioriation of mental health. Neuroleptic drugs
can lead to apathy, a state of absolute emotional deadness, depression,
suicidal states, confusion, delirium and intellectual disturbances.
Antidepressants can lead to apathy, depression, suicidal states,
loss of creativity and lack of concentration. Lithium can lead
to apathy, depression, suicidal states, loss of creativity and
lack of concentration. Antiepileptics (administered as psychotropic
drugs, e.g. carbamazepin) can lead to apathy, paradoxical agitation
(a reaction contrary to the prescribed subduing effect), lack
of creativity and epileptic attacks. Psychostimulants (administered
to children in order to subdue them) can lead to apathy, depression,
paradoxical agitation and memory problems. Tranquillisers can
lead to lethargy, suicidal states, paradoxical agitation, sensory
problems and memory gaps (Lehmann 1996a).
Even if many individuals feel that they cannot continue to exist
in their present life-conditions without taking psychiatric drugs,
the treatment may still cause a deterioration of their mental
health by, among other things, lowering their emotional resilience,
impairing the conditions for psychosocial development and life
skills, reducing their capacity to deal with the social world
and to recruit the support that could be provided by other people,
and diminishing their capacity to participate in the common effort
to improve the environment and other conditions of life. Drug-caused
receptor changes cause other mental-health-problems, making the
life of many patients even worse and preventing them from having
equal opportunities in life. The treatment may, thus, result in
increased risk of marginalisation, disability anddeath. Indeed,
as a result of suicide and other causes of death, the mortality
of psychiatric patients is markedly higher than that of the population
Without underestimating the responsibilities and potentials of
health and social care institutions and of working life, we urgently
need to enhance the resources for R&D in the field of mental health
promotion. "Participation of the users" and "innovative
approaches" should be the key words. New models of support
in emotional crises, without the risk of causing a deterioration
of mental health or increased marginalisation as a result of professional
action, are needed. People with severe mental health problems
need new forms of supported employment and of rehabilitation.
These approaches should be based on the needs and interests of
clients and users to a greater degree than they are at present..
Information, prevention and activities focusing on the major threats
to health should also have high priority.
2. Time to rethink
There is a basic need to put discussion of alternatives to current
psychiatric institutions on the European Agenda. We need a public
and open discussion about innovative approaches to the development
of better concepts, about methods of evaluation and sets of indicators
relating to mental health and its promotion, and about the development
of better methods for enhancing the visibility of the best national
and European models of promotive work.
The knowledge accumulated during years of innovative work must
be gathered and disseminated. Information has to be exchanged
on the development of institutions and places that meet the needs
of (ex-) users and survivors and of those who still are users
of psychiatry. This by no means underestimates the legitimate
and necessary work of those trying to improve the conditions inside
the custodial psychiatric system in the interest of psychiatrised
Questions put to the European agenda for the promotion of mental
health by (ex-) users and survivors are:
3. Cornerstones of mental health promotion
Funding and rights, self-determination, respect and appropriate
help are the key themes of the organisations of (ex-) users and
survivors of psychiatry, with members from about 30 European countries
represented in the European Network. Resources are needed for
the development of secure user-run or user-controlled alternatives
to the psychiatric system. If (ex-) users and survivors of psychiatry
are not able to work regularly, they need money and support systems
to enable them to live, and, if possible, working dignity corresponding
to their individual capacities. Rights, i.e. diagnosis-independent
human and social rights, are necessary to protect the body from
unwanted medical manipulations, because physical health can be
threatened and damaged by psychiatric methods. In addition, rights
are necessary to free people from psychiatric and other arbitrary
acts and from patronising attitudes.
Funding and rights, self-determination and respect, control of
one's own life situation and appropriate help (that is, help in
a situation in which there exists a subjectively experienced need
in emotional crises of a social nature), are not new demands.
They may be enshrined as general principles in recent publications
focusing on the promotion of mental health, but they are not put
forward explicitly as the voices, needs and rights of (ex-) users
and survivors of psychiatry. As no references to the publications
in the form of dissertations, documentations, memoranda, press-releases,
books, magazines, or articles of their organisations, are made,
we might be entitled to ask whether real, emphatic support for
the organisations of (ex-) users and survivors of psychiatry does
in fact exist within the framework of mental health promotion.
I have the sad impression that (ex-) users and survivors of psychiatry,
not all but still too many, are treated in the same way as they
are in psychiatric institutions and statements, without real human
dignity or value.
4. Funding and appropriate help
Funding is necessary to create effective social and emotional
support controlled by (ex)users and survivors of psychiatry themselves
and by people they trust. Therefore the European Network favours
run-away houses, crisis spaces and communication centres combined
with self-help offers, without registration and without compulsive
methods; supportive institutions to which people do not have to
be removed by police-force, but where they can go with trust instead
of fear, even when they are emotionally extremely stressed, at
their wit's end or confused.
One example of an appropriate and user-controlled institution
is the Berlin run-away house. It is intended for people who have
decided that they want to live without psychiatric diagnoses and
without psychoactive drugs. In the run-away house they can regain
their strength, talk about their experiences and make plans for
the future without psychiatric views of illness blocking access
to their feelings and their personal and social difficulties.
The house is manned around the clock by a team of social-workers,
survivors of psychiatry and psychologists. Half of the staff members
are themselves survivors of psychiatry. Our experience of more
than two years of work in the run-away house has shown that, in
principle, psychic crises can be managed without psychoactive
drugs and without means of coercion.
Alternatives are needed within the psychiatric system as well.
At our last conference, in 1997, it was stated that the development
of alternatives within the psychiatric system calls for collaboration
with professionals and, therefore, unfortunately, often an unacceptable
level of compromise. Projects tend to be unambitious and inappropriate
for users' needs. It is very difficult for professionals, and
also frequently for users themselves, to understand that traditional
methods and approaches might be both ineffective and damaging.
It is essential for (ex-) users and survivors of psychiatry to
own their own experiences and, if alternative strategies are effective
in helping them, the helpers must recognise and respect that all
individuals have their own reality and needs.
5. Rights and self-determination
The basic legal problem in psychiatry is forced treatment. I
have too little space here to go into all the other psychiatric
violations of inmates' rights. Of course we know that physicians
have the duty to forcefully treat a person that cannot express
his or her natural will rationally and is in deadly dangerbut
whoever died from a syndrome characterised by a lack of haloperidol?
If people who do not work inside a psychiatric institution do
not know about the dangers and risks caused by the administration
of psychiatric drugs and electroshocks, they may not understand
that fundamental violation of the inviolable dignity which should
be guaranteed by human rights' declarations and national constitutions.
As stated above, neuroleptics, antidepressants, lithium, anti-epileptics
(administered as psychotropic drugs), psychostimulants (administered
to children in order to subdue them) and tranquillisers can have
severe, permanent and even lethal effects. David Hill and the
British organisation MIND have estimated that, by 1992, 190,000
people were known to have died from the neuroleptic malignant
syndrome, a so-called side-effect of neurolepticswithout taking
into account the huge number of unrecorded cases (cf. Lehmann
1996b, p. 98). Another example is the above average incidence
of breast cancer among female psychiatric patients: the rate is
3.5 times that among patients in medical hospitals, and 9.5 times
than in the average population (cf. Lehmann 1996b, p. 98; Halbreich
/ Shen / Panaro 1996). This obviously has to do with increased
production of the hormone prolactin, another so-called side-effect
of psychiatric drugs. Since 1978 it has been mandatory in the
USA to make information available on the fact that rats which
receive neuroleptics in maintenance treatment and in comparable
dosages may start to develop neoplasm in breast glands that may
result in tumours. In Europe no such information is available.
This emphasises the necessity of receiving informed consent when
administering psychiatric drugs. It is the perspective of the
European Network to implement or strengthen users', ex-users'
and survivors' rights to self-determination at all levels of the
psychiatric system. The following principles, cited from the 'Mental
Health Observer', written by (ex-) users and survivors of psychiatry,
should be applied:
- People experiencing psycho-social disabilities should enjoy
equal opportunities and treatment in respect of access to, retention
and advancement in paid employment which corresponds with their
own informed choice and takes account of existing skills. In
this principle, the rights of men and women with psycho-social
disabilities should be respected.
- Equality of opportunity for persons with psycho-social disabilities
should extend to all levels of the work organisation and management
.This implies respect for confidentiality of personal information.
- Every workplace should conform to standards established by
the social partners. ensuring a healthy and empowering work-place.
- Special positive measures, such as wage subsidies and supported
employment schemes, should not be regarded as stigmatising or
as discriminatory against other workers.
The European Network aims to get these principles adopted in
all countries and would welcome ideas. The Network also wants
to have equal opportunities for (ex)users and survivors of psychiatry
at congresses and other events, not only in the form of invitations,
but also in the form of scholarships, funded travel and accommodation.
This is a special message from Finnish (ex-) users and survivors
of psychiatry who do not have the money to come to conferences
and therefore consider themselves largely excluded. One proposal
is to double the fee for psychiatric workers, to enable (ex-)
users and survivors of psychiatry to participate, because they
are generally in a very bad situation socially. (Nettle 1997)
6. Towards user-oriented mental health services in Europe
In addition to supporting the development of alternatives and
human and social rights and the exchange of relative information,
the European Network makes proposals to introduce or improve quality
assurance in the psychiatric and psychosocial field.
In April 1997 the European Network was asked by the World Health
Organisation to comment on the planned Declaration on Quality
Assurance in Mental Health Care. To promote human rights of people
in the psychiatric system the European Network suggested, among
other things, that:
- (ex-) users and survivors of psychiatry should be invited
to hearings before legislation is enacted;
- (ex-) users and survivors of psychiatry should be invited
to be ombudsmen and ombudswomen at a national level;
- there should be a body including (ex-) users and survivors
of psychiatry at a national level to monitor the human rights
of people who have, or who are said to have, mental disorders,
and to record new treatment measures and decisions of ethics'
commissions in research fields;
- (ex-) users and survivors of psychiatry should be involved
in the education and examination of health and psychiatric professionals
in a paid capacity;
- irreversible treatments such as psychiatric drugs, electro-
and insulin shock for mental disorders should never be carried
out on an involuntary patient or without informed consent. Psychiatrists
who treat patients without informed consent should lose their
- clinical trials and experimental treatments should never be
carried out on an involuntary patient without informed consent.
Institutions carrying out any such measures should be obliged
to prove that any damage arising was not caused by these measures.
- coin-operated telephone-boxes, writing paper, envelopes and
stamps, uncensored notice boards, kitchen facilities, and smoking
and non-smoking areas should be available in all psychiatric
- Patients should be allowed daily walks in the fresh air for
at least one hour;
- for every psychiatric bed there should be one bed in an anti-
or non-psychiatric run-away house or comparable institution.
Every other psychiatric bed should be in a Soteria-like institution
A considerable number of actual forms of professional action,
especially drug-treatment of psychosocial problems, even if carried
out within the framework of the psychiatric system, enhance, albeit
unintentionally, marginalisation processes.. The European Network
of (ex-) Users and Survivors of Psychiatry sincerely wishes for
serious co-operation to improve those approaches in the provision
of mental health care that promote marginalisation among the citizens
of European member states through processes that reduce the ability
to work and thus lead to an increase in the number of disability
The European Network willof courseco-operate with all organisations
and people who seriously stand up for better conditions for (ex-)
users and survivors of psychiatryand who seriously stand up for
them not only through words, but through actions, too.
The European Network wants to have a meaningful participation
to ensure input and influence for (ex-) users' and survivors'
interests in international organisations such as the World Health
Organisation, the European Network on Mental Health Promotion,
the European Network on Mental Health Policy and the World Federation
for Mental Health. Modern promotion of mental health in Europe
has to integrate and promote the innovative approaches of users
and clients themselves.
Copyright by Peter Lehmann 1998