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The Transition from
Institutional to Community-based Care Across the European Union
Many
people spend long years in institutional care. Some of them have
physical or intellectual disabilities, others suffer from mental health
problems, and yet others are elderly and frail. There are also many
children in institutions, both with disabilities and without. For
decades, the existence of such institutional care was seen as proof that
society cares, that it does not leave vulnerable persons without
assistance and that it provides the needy with food, shelter, clothing
and treatment. But is this indeed the best possible model which advanced
European societies can offer to these people in the 21st century? I am
convinced that in an age when non-material aspects such as human dignity,
autonomy and inclusion in the community are increasingly recognised as
being of paramount importance, European societies should aim for more
humane, person-centred, individualised models of care. The users
themselves and, where applicable, also their families should become
partners and take part in all decision-making. Everyone should be
enabled to reach their full potential.
( Vladimír Špidla – ex Commissioner for
Employment, Social Affairs and Equal Opportunities)
Summary
Many people of all ages
and different conditions (elderly, children, persons with disabilities –
including persons with mental health problems) live in residential
institutions which tend to segregate them from the community.
These institutions are not defined primarily by their size but above all
by features of “institutional culture” : depersonalisation, rigidity of
routine, block treatment, social distance, paternalism…
In general, the process of desinstitutionalisation must respect users'
rights, and users have to be involved in all decision-making processes.
There has to be a holistic system of prevention of placement into
institutions. Community-based services must be created in parallel with
the closure of the institutions.
The process requires
sufficient and well-trained staff with skills appropriate for community-based
care as well as adequate support to families.
Typical characteristics of
"institutional culture" have been described and analysed by pioneering
researchers some four decades ago. It has long been argued that
institutional care segregates users and tends to be characterised by
depersonalisation (removal of personal possessions, signs and symbols of
individuality and humanity), rigidity of routine (fixed timetables for
waking, eating and activity irrespective of personal preferences or
needs), block treatment (processing people in groups without privacy or
individuality) and social distance (symbolising the different status of
staff and residents).
Key challenges in transition from institutional to community-based care
and suggestions on how to address them
1. Over-investment
in current institutional arrangements
2. Risk of maintaining parallel services
3. Too "institutional" alternatives
4. Closure without
adequate alternatives
Common Basic Principles
for transition from institutional to community-based care
1. Respecting users'
rights and involving them, and their families, in decision-making
2. Prevention of institutionalisation
3. Creation of community-based services
4. Closure of institutions: This process should, if possible, start from
pilot projects.
5. Restriction on investment in existing institutions
6. Development of human resources
7. Efficient use of resources
8. Control of quality
9. Holistic approach
10. Continuous awareness-raising
Comment of Ian PFEIFFER
, chairman of High Level Expert Group preparing
Report of the Transition from Institutional to Community-based Care
The need for community mental health services
(where we stand in the
reform of the mental health system)
In a period when political forces (including the Romanian government)
declare that the welfare state has to come to an end, it is important
that professionals in the area of social protection and mental health
raise again basic questions about the chances and the rights of people
with mental health issues to have access to adequate services. The paper
will look to some of the Romanian social policy measures adopted in the
area of mental health that have marked the EU integration process, and
point to their effects on the quality of life of people with mental
health problems. It will discuss the Romanian regulations on assisted
living, and its positive effects in deinstitutionalization. It will also
raise issues related to the lack of community mental health services and
its negative consequences on the outcomes of deinstitutionalization and
the quality of life of beneficiaries. Outreach by community mental
health services to people with mental health problems will be presented
as a necessary multi-professional comprehensive action, which can
provide shelter, monitored medication, rehabilitation activities, legal
representation, psychological and social support for people with mental
health problems. We shall argue that investment in community mental
health services is a necessary condition to the rehabilitation of
mental health patients, a necessary step in the improvement of both
psychiatry services and social services for social cases.
Maria Roth -
Cluj-Napoca - Romania -
roth.mari@ymail.com
Présentation réforme SSM 2010 en Belgique
Historique -
En
région de Bruxelles-Capitale
-
Années 60 : recours privilégiés aux soins en ambulatoire et
création de centres conventionnées INAMI
-
Années 90 : fermeture d’un nombre conséquent de lits
psychiatriques (lits T) sans création équivalente de places
résidentielles (IHP & MSP)
La
région bruxelloise se différencie des autres régions par une offre
psychiatrique moindre, des soins à domicile moindre, une médecine
hospitalière générale avec beaucoup d’actes techniques (voir la présence
de 3 hôpitaux universitaires), un nombre important de centres
conventionnés INAMI et une offre ambulatoire et associative importante,
variée et pointue.
-
2007 : lancement des projets thérapeutiques
(fin en avril 2011)
Les projets
thérapeutiques ont permis (toutes les nuances sont de mises):
-
de jeter
des ponts entre les secteurs hospitaliers, ambulatoires et
intermédiaires.
-
de
formaliser le travail en réseau.
-
d’identifier une multitude de modèles de coordination
-
d’associer
des institutions non directement dispensatrices de soins dans
les processus de concertation
-
d’associer
le patient aux décisions concernant son plan de soin
Les projets
thérapeutiques c’est aussi :
-
des
modalités de fonctionnement rigide imposé par l’INAMI
-
une
temporalité inexistante pour démarrer les projets dans de bonnes
conditions
-
une
inadéquation entre le temps clinique et le temps organisationnel
-
l’absence
de la première ligne (médecins généralistes)
-
un
monitoring quantitatif du patient totalement inadapté
-
une mise à
mal de la protection de la vie privée
-
une
communication défaillante entre les instances décisionnelles et
la base
Une bonne
partie de la réforme proposée s’inspire du modèle de Birmingham qui
privilégie les équipes mobiles d’intervention dans l’organisation des
soins. Les anglais ont fait
le pari qu’il était possible de soigner les gens dans leur milieu de vie
plutôt qu’à l’hôpital.
-
Investissement
financier énorme
-
Equipes
mobiles constitués de staff conséquent dont plusieurs membres
travaillent conjointement soit à l’hôpital, soit dans un « community
mental health team » (sorte de SSM)
-
C’est
la mixité des équipes qui permet une bonne coordination entre les
différentes équipes ainsi que la continuité des soins
-
Intervention des
équipes dans l’heure (24h/24h) et dans n’importe quel lieu de la
ville.
-
Les
liens avec la 1ère ligne sont encore insuffisants malgré
la création d’une porte d’entrée (pas la seule possible) dans le
système que sont les « primary care »
-
Le secteur résidentiel
est géré soit par des grosses organisations sociales (250
personnes), soit par des charity (associations de patients et de
proches) en lien avec les pouvoirs locaux.
Points
d’attention (pas exhaustif)
Ø
C’est l’hospitalier qui a la main vu que c’est sur base des moyens
humains et financiers liés à leurs lits psychiatriques (art.107) que
les fonctions 2,3 et 4 seront réalisées. La promotion des projets
passe par eux.
Ø
Le
choix des partenaires ambulatoires semble également être l’apanage
du secteur hospitalier. Cela, ils sont « obligés » de collaborer
avec des structures ambulatoires s’ils veulent obtenir une chance de
voir leur projet retenu.
Ø
Les
SSM semblent être invités à s’inscrire dans la fonction 1.
Personnellement, je pense qu’il est indispensable que la culture
ambulatoire infiltre également les fonctions 2 et 3 afin que
l’expertise, le travail de proximité et l’ensemble des outils et
méthodes « faisant soin » développés depuis de nombreuses années par
le secteur ambulatoire soient pris en compte au niveau des contenus
de ces différentes fonctions.
Ø
C’est la mixité des équipes qui vont permettre de créer du lien
entre les différents dispensateurs de soins et ainsi permettre la
continuité des soins
Youri Caels -
Coordinateur Plate-forme concertation
santé mentale en Région de Bruxelles-Capitale
Deinstitutionalisation
as a resource and a therapeutic practice
As is well known, after
Philippe Pinel, the man who cast off the shackles of the insane, the
French law of 1838 was officially sanctioning the asylum model.
The
director of the mental hospital was a sort of Louis XIV within the
Institution. Just in the same way as the Berlin wall represents an
extraordinary metaphor of the uselessness of containing subjective
personalities within one wall. When in the year 1961 the first director
of a psychiatric Asylum
simply refused to sign the restraint register, an epoch of dialectic,
rather than tyranny, began towards mental patients.
Transcultural psychiatry can explain to us today that what we once
believed to be unreason is actually just a “different” form of Reason.
International experiences demonstrate the fact that it is possible to
substitute ever larger sectors of a traditional service aimed at
providing care and reparation for the damage done, with
prevention-centred services.
The truth
is that rehabilitation is directly connected to deinstitutionalisation.
Rehabilitation is closely linked to emancipation. In this process, the
organisation of resources for work becomes central.
In the end,
to cure is to change. Thus, this concept of emancipation goes beyond the
closure of lunatic asylums and extends further.
During the
“great deinstitutionalisation” of the 70s everyone, both users and
professionals, played their part in freeing themselves from the burdens
and fetters of Total Psychiatric Institutions. Today residential
facilities, as part of an organised network of services, are a
cornerstone of deinstitutionalisation and rehabilitation.
In the 80s
there was a widespread debate throughout Europe concerning
deinstitutionalisation. In
those places where the
historical budget which used to belong to the Total Institution was not
dismantled and dispersed, but reconverted into new reformed community
services, it was largely possible to preserve resources.
Deinstitutionalisation costs less than asylums.
It
is neither necessary nor advisable to allow budgets to fall drastically,
which would greatly reduce action in the spheres of rehabilitation,
therapy, social healthcare. Reconverting resources, i.e. staff, implies
changing attitudes within the service.
Only
if reconversion is TOTAL will it be possible to leave authoritative,
control-based psychiatry behind and make way for a different future. As
long as one single person is still tied up or isolated, this kind of
response will continue to be considered ultimately indispensable. This
can create an ideological-practical-ideological short circuit which
reinforces and feeds itself.
Human
resources are by far the most important, as staff is capable and
experienced in relating to such special clients as psychiatric service
users are. Traditional psychiatric staff should be reconverted and
become carers who work in people’s homes. Their previous role which
aimed at control must be largely forgotten, and instead a new practice
based essentially on the idea of service must be developed.
by Lorenzo Toresini
Beyond the principle of love and hate”,
„Dincolo de principiul iubire-ură.”
The title of this paper represents
a metaphor for what we have considered to be the relational quintessence
of these teenagers acting-outs, abuse, suicide attempts, rapes, quick
and brutal transitions from idealization to devaluation.
Keywords: institutions,
communication, teenagers, dependency, autonomy
Authors: Simona Trifu MD,
psychiatrist, Hospital Al Obregia
Elena Dicu psychologist, Complex
for Communitarian Services Găieşti
Promoting empowerment and belonging through education: a pioneer project
with people with psychiatric disorders in Portugal
This communication presents the main results of a pioneer project in
the field of educational inclusion, developed with (not for) people with
psychiatric disorders, admitted to the unimputable ward of a Public
Hospital. This project aimed at enhancing academic qualifications of a
group of individuals with psychiatric disorders by offering them the
possibility to engage in the process of recognition, validation and
certification of competences (RVCC) achieving basic compulsory education
(9 years). This process enabled them to identify knowledge and
competencies acquired previously in their professional and social
trajectory.
Besides the description of this project (concerning its goals,
methodologies, activities) we present the outcomes of the evaluation
developed. Documents and materials produced by the participants during
the process were taken in consideration. We also developed two Focus
Groups [groups of adults (n=10) and professionals (n=8)] during which
the following themes were explored: importance of including people with
psychiatric disorder in the RVCC process, gains from RVCC to the
rehabilitation program, introduced adjustments (e.g., methodologies),
individuals and technicians perspectives about the main gains of the
process (e.g., for autonomy, welfare) and perceived difficulties and
strategies for their resolution.
Results indicate that both technicians and patients
perceive(d) this educational process as extremely significant in
promoting the well-being and renewed perception of (social) belonging of
the participants. They were able to improve different dimensions of
their performance, train autonomy skills and experience opportunities
for social participation.
Looking critically at these results, accordingly to the
Human Rights framework, it becomes evident that governments and
institutions must join efforts on planning and developing quality
educational policies and practices effectively having in consideration
the specific needs of people with psychiatric disorders. To accomplish
this challenge is essential to involve and listen to their perspectives
when creating positive environments that contribute to their empowerment
and social belonging.
Dora Redruello - Cerebral Palsy Association of
Coimbra -
Snia Mairos Nogueira
Faculty of Psychology and Educational Sciences, University of Coimbra
dora.redruello@apc-coimbra.org.pt
Community Based Rehabilitation and Clubhouses as Good Practice
The CBR principles and best practices of Clubhouses are the topics of
the presentation.
Key words: CBR, Clubhouse model, psychosocial rehabilitation,
empowerment, social inclusion.
According to growing evidence the community-based rehabilitation
opportunities for people with psychosocial problems or mental disorders
are underdeveloped in majority of European countries. This is a very
real challenge in many EU member states, as well as, in the rest of WHO
European region outside the EU.
Community-based rehabilitation (CBR) methodology is built on the
multi-science, multi-professional and multi-sectorial approach. CBR
covers the whole person with psychosocial problems or other disability
and all aspects of everyday life in the process of recovery, empowerment
and social inclusion. In these respects the prevailing medical
approaches are not efficient enough or cost-effective and the
involvement of service-users in their care is unsatisfactory. For
successful recovery and social inclusion all areas of personal
development are important. This wider approach has been jointly
formulated and recommended by the WHO, ILO and UNESCO since 1980s (WHO
1994, 2004 and 2010). However, the good quality CBR-based psychosocial
rehabilitation like Clubhouse model is taken into use only in minority
of European countries.
World Health Organization (WHO 2003 and 2007) has also published
recommendations how to organise optimal mix of mental health services (e.g.
pyramid model) which is based on human rights and equal opportunities of
people with mental disorders. Community-based psychosocial
rehabilitation is the cornerstone of the optimal mix of services. The
Clubhouse model is mentioned as a useful model in this context.
In
Europe we need effective implementation of the CBR recommendations and
dissemination of the evidence-based Clubhouse model. Today Europe is
divided into three: (1) Best practice countries like Finland, Sweden,
Denmark, Norway and Scotland where the clubhouse model is integrated
part of national mental health policy, (2) 13 other countries where one
or two Clubhouses are available but the model is not promoted actively,
and (3) about 30 countries where Clubhouses and other CBR services are
not yet available. The transfer of CBR knowledge from the best practice
countries to the less developed countries is needed urgently.
Esko Hanninen - Helsinki -
Finland -
hanninen.esko@gmail.com
“The psychiatric nurse in
multidisciplinary mobile team”
In the last 17 years, in Romania is opened “The Trainig Center
Fracaritatis Bucharest” as a part of “Psychiatric Clinic Hospital “Prof.dr.Al.Obregia”,
with the supervision of “Brothers of Charity” Organisation from Belgium,
having as president Br.Dr.René Stockman.
We
are a team of teachers leaded by Conf.dr.Oancea Constantin, including
psychiatrist, psychologist and seven nurses with a big professional
experience, with scoolarship abroad. We prepare nurses for
specialization in psychiatry in one academic year programme (1500
hours), recognized officially by The Ministry of Health.
We
have the role of teachers for the nurses who work in psychiatric
hospitals or in community (over 450 for now). We offer knowledge and
abilities for nuses, in order to work with patients and families, for
difficult cases. It’s necessary to have a new perspective and attitude
toward them, to view them in a holistic way.
The
tendency for desinstitutionalisation and care in the community, created
the necessity of development of (MHCC) Mental Health Community Centers
and the mobile teams to work in crisis situations, where the person
live, in her own environment.
The
“mobile team” concept is new in Romania and could have: psychiatrist,
psychologist, social workers and psychiatric nurses at least.
The
place of specialized psychiatric nurse is important in mobile team,
because there are seen the human qualities of nurses: kindness,
patience, understanding, tolerance,so they can make a good contact with
human in great suffering, extreme poverty, mentally ill persons,
humiliated and neglected by the society.
Also,
the psychiatric nurse can stay much more time with the patient and
families in need and they can made psychoeducation.
We
need such persons with a “big and worm heart” who have the consciousness
and to do the effort to change “just a little bit” the life of other
human being with an unhappy destiny. Each of us can do one thing in
order to give them the human dignity.
Hrestic
Stefania Mihaela
Coordinator of “The Trainig Center Fracaritatis Bucharest”
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“Asistenta medicală de psihiatrie în echipa multidisciplinară mobilă”
Rezumat
În
ultimii 17 ani, în Romania funcţionează “Centrul de Formare Fracaritatis
Bucuresti” , în cadrul Spitalului Clinic de Psihiatrie
“Prof.dr.Al.Obregia” sub egida organizaţiei belgiene “Fraţii Carităţii”,
reprezentată de Br.Dr.René Stockman.
Un
colectiv de lectori în frunte cu Conf.dr.Oancea Constantin, psihiatru,
psiholog şi sapte asistente cu mare experienţă şi cu studii în
străinătate, pregătesc asistenţi medicali pentru specializare în
psihiatrie, într-un program de un an academic (1500 ore), acreditat de
Ministerul Sănătăţii.
Noi
avem rolul de formatori pentru asistente care lucrează în spitale de
psihiatrie sau în comunitate (peste 450 până acum). Noi oferim
cunoştinţe şi abilităm asistentele pentru a lucra cu pacienţii şi
familiile lor pentru cazuri complexe întâlnite pe teren, pentru a-şi
schimba atitudinea şi a privi din perspectivă holistică.
Tendinţa la dezinstituţionlizare şi îngrijiri în comunitate, a creat
necesitatea dezvoltării CSMC (Centre de Sănătate Mintală Comunitară) şi
formarea de echipe mobile de intervenţie în situaţii de criză, acolo
unde se află persoana, în mediul ei obişnuit.
Conceptul de “echipă mobilă” este o noutate în Romania şi ar trebui să
cuprindă minim un medic psihiatru, psiholog, asistenţi sociali,
asistenţi medicali specializaţi în psihiatrie.
Locul
asistentului specializat este important în echipa mobilă pentru că se
apelează la calităţile umane ale acestor persoane: blândeţe, răbdare,
înţelegere, toleranţă, aşa încât să poată face un bun contact uman cu
cei în suferinţă, extrem de săraci, umiliţi de societate, marginalizaţi.
De asemenea, asistentul poate petrece mai mult timp cu pacientul si
familia în situaţii dificile şi se poate implica în educaţia pentru
sănătate mintală.
Avem
nevoie de persoane cu “inima mare şi caldă”, care să apeleze la
conştiinţa lor, în efortul de a schimba “cât de cât” viaţa unor semeni
care nu au avut o soartă fericită. Fiecare din noi poate face ceva care
să le redea demnitatea umană.
Hrestic
Stefania Mihaela
Coordonator
“Centrul de Formare Fracaritatis Bucureşti”
"La desinstitutionnalisation en France : l'exemple de Lille-Est"
Le basculement du "tout hospitalier"à la psychiatrie dans la cité avec
le développement de
-
de
l'hospitalisation à domicile ,
-
des
"appartements thérapeutiques" et
-
du travail en
liaison avec
-
création
d'un conseil local de Santé Mentale
- limites (et les eventuels "effets pervers")
Jacques
Debieve - Lille - France
Outside-In, Inside-Out: A Copernican moment and the Birmingham Model
Outreach services offer two possibilities: Taking people out of the
institution and bringing people in to care in the community. For those
people already inside the system, whom the hospital doesn’t help or
creates more problems than it solves, it is a process of Inside-Out;
taking the person out of the Institution, and the Institution out of the
person, and relates to the first part of the ‘Tripod of Inclusion’.
And for those outside the
system and ill, but for whom the step into services creates more trauma,
for whom hospital makes no sense, but at the same time we and society
cannot stand by: A process of making Outside-In; not bringing people
into the Institution but into society, and relates to the third part of
the ‘Tripod of Inclusion’.
20 years ago in Birmingham
England a radical process of change created a system of community based
outreach services that offered the same necessary functions of the
hospital but instead provided them in people’s homes, working alongside
anyone who cared to be involved in their neighbourhoods. It was a
Copernican shift from patients revolving around the service in our
institutions, to a service that revolved around the patients in their
communities. Outreach is a way of organising resources, a means that can
be adapted to a chosen end, whether that be reaching the homeless, the
refugee, meeting people where they are and not where we are. For sure it
also changes the way we think and practice, as we people in a new
context and presenting more than just pathology. The Birmingham Model
is one example of how outreach can meet the challenges of moving from
exclusion to inclusion.
Professor Mervyn Morris, Birmingham City University, England
Mervyn
Morris has held Professorial posts in the UK and Norway, and is
currently Director of Community Mental Health in the Centre for Health
and Social Care Research at Birmingham City University. He has an
academic background in education and social policy, with a focus on
workforce development to deinstitutionalise care and develop community
based services. His international work includes service re-design
through Government and EU funded projects, and also for the World Health
Organisation in the Balkans and Asia.
Mervyn
has extensive experience of working in hospital and community mental
health services, with a clinical interest in psychosis and in particular
voice-hearing, developing service user perspectives of research and
recovery. Mervyn has also been a Chief Executive of a mental health NGO
and is currently Chairman of Soteria Network.
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