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7th hearing voices world congressAlcalà de Henares, Madrid 6-7 November 2015

The Prato Hearing Voices Group and the Joint Experiences & Local Mental Health Systems project

How to facilitate the development of independent self-help groups and associations

Donatella Miccinesi*, Pino Pini*, Consuelo Rossi*, Sashi Sashidharan**

*Italian Mental Health Association (AISMe) and Mental Health Europe** Institute of Health & Wellbeing, University of Glasgow

My interest on hearing voices

My interest on hearing voices began about 20 years ago when I met Marius Romme e Sandra Escher in Florence when presented their book «Accepting Voices». In that occasion I was asked to help translate the chapter of the book regarding the experience of the voice hearers who did not attend mental health services but could cope with their voices trough different strategies. While translating the book a person close to my family disclosed me to be a voice hearer but she was not attenting mental health services because she feared to loose her job. She activated some personal strategies to cope with her voices. Hence the idea to set up an hearing voices group in Tuscany.

The Prato Hearing Voices Group

The Prato Hearing voices group (HVG), inspired by the Romme-Escher experience was established in 1998 in Prato by: • the Italian Mental Health Association

(AISMe) in collaboration with • the Prato Mental Health Service • the Prato City Council

The Prato Hearing Voices Group

• The group meets once a week in the premises of the Prato municipality (the East Borough Council) outside the services premises and is led by a professional of AISMe

• AISMe has a formal contract with the municipality of Prato and with the service to run the group

• A nurse of the service participates to the hearing voices group

• Most of the users come from the service and from the Family doctors

• Before attending the group the Romme questionnaire is proposed to test whether the person can comply with the group

The Prato Hearing Voices Group

Some of people developed more autonomy leaving the parents’ home and finding a job.

Most of them could cope much better with their voices and recognize the triggers of their voices

Now the group is attended regularly by six voice hearers: the woman attending the group since the beginnig and other five new persons

It is important that the City Council recognizes the value of the group and supports it economically

I

The relatives group

The Prato relatives’ self help group has been established in 2000 with the consent of the user hearing voices group.

The agreement was that the relatives would speak

only of themselves as individuals not like carers of the users.

The relatives group

Now the relatives’ group is composed of 7/8 persons, some of them are changed and have not necessarily a hearing voices relative in the hearing voices group. They support each other and may help people when there are difficulties with the service

Training&education

The group has established close relationship with the Tuscany user network and the Tuscany Mental health associations network.

They asked the HVG and AISMe to organize training courses for professionals, users and carers.

The courses have been successful and have been accredited by the health authority.

The Prato Hearing Voices Group as part of a wider context

Several elements interact both at general and local level with the Prato HVG • The development since the early 80s of a self

help movement also in Italy • Different meanings of self help and recovery• Global Knowledge and Local Knowledge• The Joint Experiences and Local Mental

Health Systems (JE&LMHS) project

The development of the self help movement in Italy

Below some National and international user networks and mental health associations that supported the growth of self help groups in Prato by the end of the 80s:

-Mind -Mental Health Europe -Survivors Speak out -ENUSP -INTERVOICE -Others

The 1° generation organizations critical against the bio-medical approach

• The above mentioned organizations and many others like them are particularly focused in personal experiences and life stories within the context where people live and outside diagnostic and therapeutic approaches. We call these 1° generation organizations critical against the bio-medical model.

• We consider the Prato HVG as 1° generation organization critical against the bio-medical model.

The 2° generation organizations in favor of the bio-medical approach

In more recent time many organizations, including several mental health services, have facilitated the development of new groups and associations based on biomedical and diagnostic categories (so-called self-help groups for anxiety, depression, bipolar disorder, etc.). We call these more recent organizations as 2° generation organizations in favor of the biomedical model. These organizations are very far from the aims and ethos of the first generation groups and associations we are working with.

Local Knowledge and Global Knowledge

• The difference between Local Knowledge and Global Knowledge has been clearly described (Braken&Thomas 2006)

• In this phase there is the risk that a negative globalization kills the local knowlegde and the personal experiences of people living in their communities.

• We think mental health as well as other health sectors need to find a better balance between local and global dimensions.

• For this reason we work closely with the Mental Health Europe’s Beyond the Biomedical Paradigm Task Force in order to make people aware of the risks of the predominance of the bio-medical approach in order to maintain and develop alternatives and especially the local knowledge http://www.mhe-sme.org/policy-work/bbp-task-force/ .

Tetralogue as involvement of civil society

• Dialogue (professional-user)

• Trialogue (professional-user-relative)

• Tetralogue (professional-user-relative-civil society representative)

The involvement of civil rapresentatives when dealing with mental health problems guarantees the local perspectives are taken in adequate consideration

The Joint Experiences & Local Mental Health Systems project

Working within the local community through a joint and at peer level work with the following three elements: -Associations (mainly users and relatives)-Services -Municipalities

The Joint Experiences and Local Mental Health Systems project

• The basic assumption of the JE&LMHS project is that mental health should not be the exclusive matter of services but the whole local community should be directly involved.

• The aim of JE&LMHS is to facilitate the development of local innovative experiences through the active collaboration at peer level of mental health associations (particularly users/carers associations), services and municipalities.

• We define Joint experience the projects runned at peer level by user-relative organizations, services and local governments. Everyone has an active voice at all levels and responsibility is shared. These projects are very different from therapeutic/rehabilitative projects established and runned by professionals only.

Examples of Joint Experiences

User self help oriented groups Relative self help oriented groups

Voice hearers groupsSport groups Art groupsEmployment groupsHousing groupsResearch groupsTeaching groupsEvents organizing groups

The Intermediate Area of the Joint experiences

• In order to activate and maintain the growth of the Joint Experiences it is important to establish an intermediate Area between the service and the community.

• This Area guarantees independence of the weaker groups (user and relatives) from stronger groups (services and local governments). In this area it is possible to develop a synergy between the experts by profession and the expert by experience and to develop new original practices tailored to the needs and aspirations of people in need.

Local Mental Health System scheme. Relationship with the Intermediate Area

Three editions of the Joint Experiences and Local Mental Health Systems project

• 2002-2005 Prato

• 2009-2012 Prato, Florence and North Lanarkshire (Scotland)

• 2014 Tuscany Region

AISMe had and continues currently to have a leading role in the JE&LMHS project in close collaboration with other organizations (especially with user and relative organizations)

First edition of the JE&LMHS project(Prato 2001-2005)

In Prato we try to organize the whole community (services, groups/associations and local goverments) around mental health issues (IMHN* conference on Recovery, Prato 2000)

The Mental Health Department is articulated in four main areas. The Prevention/ Promotion area of the Department will support temporarily the Joint Experiences.

It is agreed that shortly and as soon as possible the Intermediate Area of the Joint Experiences will be established and will be coordinated democratically by representers of groups-associations, of the mental health department and of the local municipalities.

Unità FunzionaleSalute Mentale Adulti

Unità FunzionaleSalute Mentale Infanzia-Adolescenza

The four areas of the Prato Mental Health Department 2005

A. AREACSM-DISTRETTO

Budget 5/12 del totaleCSM via Torino 5

6000 persone anno (600 santari-sociali)1. Proiezioni art, distrettuali:Nord, Sud, Centro-Est, Ovest(prot sociale)2.Accesso 12h x 6gg settimana3.Attivita’ ambulatoriali, domiciliari, prese in carico4.DH extraospedaliero (da formalizzare)5.Emerg-.urgenza, mmg (Prot 118)

B. AREA OSPEDALIERABudget 2/12 del totaleOspedale generale 250 persone anno1. SPDC 5 DH 12. Pronto soccorso (prot)3. Consultazione legame

Progetti specialiCliniche private e università 30 persone anno

C. AREA RIABILITATIVABudget 4/12 del totaleSedi varie 100 persone annoResidenze sanitarie Clessidra Tulipani Humanitas, AliceProgetto abitareDiurni sanitari Stanzone adolescenti Humanitas Alice CUI residenze sociali 115 persone seguite

D. AREA PREVENZIONE-PROMOZIONE SALUTE (JOINT EXPERIENCES AREA)

Budget 1/12 del totaleSedi varie 250 persone annoPecci, Dryphoto, Teatro PO Polisportiva Aurora, Iolo, S.Paolo, Mosaico, AISMe In rapporto con circa 30 associazioni

The Tuscany Region 2005 survey

The Prato DSM compared with the other 11 Tuscany DSM, despite the least budget, gives evidence of similar or even better outcomes (2005 Tuscany Region Mental Health Report )

We suppose that those outcomes depend on the many existing joint experiences which allow people different and more suitable solutions than those very expensive and cronicizing offered by traditional rehabilitative services runned only by professionals

Second edition of the JE&LMHS project(Prato, Florence and North Lanarkshire 2009/2012)

• AISMe in collaboration with the user and relative Tuscany networks coordinates this phase of the project

• The basic elements of Local Mental Health System, Joint Experience and the Intermediate Area of the Joint Experiences are further defined both at teoretical and practical level

• It is discussed whether the Intermediate Area of the Joint Experiences needs to have its own structure as an organization to better relate to services and to local governments

Third edition of the JE&LMHS project (Tuscany Region 2014)

Tuscany Region Health Agency (ARS), AISMe, User Tuscany Network, Tuscany Mental Health Association Network

• Identifying and mapping joint experiences in Tuscany• Developing Joint Experiences• Developing a democratic health system • Establishing a better articulation between the

therapeutic-rehabilitative practices (Global Knowledge) of services and the socio-cultural practices of the local community (Local Knowledge)

The Italian National Platform led by user and relative organizations

• Launched October 2012 in Florence by MHE&AISMe and many other associations of users and carers

• Presentation of the Florence Manifesto in Roma at the Health Ministery (2014)

• Involving Italian Members of the European Parliament in mental health issues and to be part of the MHE “Coalition for Mental Health and Wellbeing”

• Implementation of CRPD at national level (2015)• Currently the platform is seeking alliance with other

user, relative, professionals and political organizations

How to facilitate the development of independent self-help groups and associations?

In our experience the development of independent self-help groups and associations can be facilitated by:

• Organizing a system of relationships between associations, services and local governments to jointly develop original initiatives

• Taking in account the natural evidence related to the common sense of individuals within their natural context

• Balancing Global knowldge with Local knowledge

Thanks for attentionAISMe

aisme.sh@gmail.com