Stigma: AnInternational Briefing PaperTackling the discrimination, stigma and social exclusion experienced by people with mental health problems and those close to them

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Published by Health Scotland

Edinburgh OfficeWoodburn House, Canaan LaneEdinburgh EH10 4SG

Glasgow OfficeElphinstone House, 65 West Regent StreetGlasgow G2 2AF

NHS Health Scotland, 2008ISBN: 1-84485-413-2

Health Scotland is a WHO CollaboratingCentre for Health Promotion and PublicHealth Development

Designed by Redpath www.redpath.co.uk

ContributorsThis briefing paper was commissioned by Health Scotland, a World Health Organization Collaborating Centre that is taking forward work on stigma and discrimination as part of the WHO European Regions Mental Health inEurope Implementation Plan 20052010. It was written by researchers from the Scottish Development Centre forMental Health (SDC) (Dr Felicity Callard, SDC AssociateConsultant; Liz Main, SDC Associate Consultant; FionaMyers, SDC Senior Policy Researcher; Ann-Mari Pynnonen,SDC Research Worker) in collaboration with the Institute of Psychiatry at Kings College London (Professor GrahamThornicroft; Professor Rachel Jenkins), Rethink (Dr VanessaPinfold), and Professor Norman Sartorius.

31References

[20] Anderson R, Wynne R, and McDaid D,Housing and employment, in MentalHealth Policy and Practice across Europe:The future direction of mental health care,Knapp M, et al., eds, 2007. Open UniversityPress: Maidenhead. p. 280-307.

[21] Freyhoff G, et al., eds. Included in Society:Results and Recommendations of theEuropean Research Initiative on Community-Based Residential Alternatives for DisabledPeople, 2004. European Coalition forCommunity Living: Brussels.

[22] Amaddeo F, et al., Reforms in communitycare: the balance between hospital andcommunity-based mental health care, inMental Health Policy and Practice acrossEurope: The future direction of mentalhealth care, Knapp M, et al., eds, 2007.Open University Press: Maidenhead. p. 235249.

[23] Fazel S, and Danesh J, Serious mentaldisorder in 23,000 prisoners. Lancet, 2002.359: p. 545550.

[24] Dressing H, and Salize HJ, Forensicpsychiatric assessment in European Unionmember states. Acta PsychiatricaScandinavica, 2006. 114: p. 282289.

[25] Link BG, Stigma: many mechanisms requiremulti-faceted responses. Epidemiologia ePsichiatria Sociale, 2001. 10: p. 811.

[26] Sayce L, Beyond good intentions: Making anti-discrimination strategies work. Disability & Society, 2003.18(5): p. 625642.

[27] Pinfold V, et al., Active ingredients in anti-stigma programmes in mental health.International Review of Psychiatry, 2005.17(2): p. 123131.

[28] Couture S, and Penn D, Interpersonalcontact and the stigma of mental illness: areview of the literature. Journal of MentalHealth, 2003. 12(3): p. 291305.

[29] Kelly BD, Structural violence andschizophrenia. Social Science & Medicine,2005. 61: p. 721730.

[30] Kelly BD, The power gap: freedom, powerand mental illness. Social Science &Medicine, 2006. 63: p. 21182128.

[31] Link BG, and Phelan JC, Conceptualizingstigma. Annual Review of Sociology, 2001.27: p. 363385.

[32] Hastings G, Social Marketing: Why shouldthe devil have all the best tunes?, 2007.Butterworth-Heinemann: Oxford.

[33] Marshall M, How effective are differenttypes of day care service for people withsevere mental disorders? Health EvidenceNetwork Synthesis Report, 2005. WorldHealth Organization: Copenhagen.

[34] Sartorius N, and Schulze H, Reducing theStigma of Mental Illness: A Report from aGlobal Programme of the World PsychiatricAssociation, 2005. Cambridge UniversityPress: Cambridge.

[35] Sayce L, From psychiatric patient to citizen:overcoming discrimination and socialexclusion, 2000. Palgrave: Basingstoke and New York.

[36] Mental Health Europe, Conclusions andrecommendations for policy and practice.Resulting from the final conference of MHEsTransnational Exchange Project GoodPractices for Combating Social Exclusion of People with Mental Health Problems,2007. Mental Health Europe: Brussels.

[37] Parker C, Developing mental health policy:a human rights perspective, in MentalHealth Policy and Practice across Europe:The future direction of mental health care,Knapp M, et al., eds. 2007. Open UniversityPress: Maidenhead. p. 308335.

Contents

01 Why focus on the discrimination, stigma and social exclusion experienced by people with mental health problems and those close to them?

02 Where there is discrimination there is injustice and inequality

03 What are discrimination, stigma and social exclusion?

06 How do discrimination, stigma and social exclusion operate?

07 Why tackle discrimination, stigma and social exclusion?

08 How do discrimination, stigma and social exclusion affect peoples day-to-day lives?

10 How to tackle discrimination, stigma and social exclusion10 What we know about how to reduce discrimination11 Tactics

11 Influencing public opinion12 Convincing and advocating14 Developing projects15 Using the law

18 Actions can be taken at different levels18 Actions can be targeted at different groups19 Actions can focus on particular mental health problems

or all people experiencing mental health problems19 Actions can use different ways of thinking

about mental health problems

21 Making it happen

23 Supporting instruments, principles and policies23 United Nations23 Council of Europe24 WHO European Region24 European Union

24 A call to action

25 Organisations

30 References

People like me who have amental health problem canlive full lives. What holds usback is discrimination, itsother peoples attitudes.

Its time for action.

1Introduction

Discrimination, stigma and social exclusionmake it impossible for people with mentalhealth problems to participate fully in society.

Discrimination, stigma and social exclusiondiminish the societies in which they areallowed to happen.

At the WHO European Ministerial Conference on Mental Health in Helsinki in January 2005,health ministers from every WHO EuropeanRegion country signed up to the Mental HealthAction Plan and Mental Health Declaration forEurope [1, 2]. They endorsed mental health andmental wellbeing as fundamental to the qualityof life and productivity of individuals, families,communities and nations.

A significant factor undermining the mentalhealth and well-being of individuals andcommunities is discrimination. Tackling thesources of discrimination is therefore animportant part of all initiatives aimed atimproving population mental health. For peoplewith mental health problems it is fundamental to ensuring their participation in society as equalcitizens. Tackling the discrimination, stigma andinequality people with mental health problemsand those close to them experience is thereforeidentified in the Declaration and Action Plan as a priority for the next decade. This will include protecting human rights, implementinglegislation to ensure that those with mentalhealth problems are able to participate fully insociety, and establishing partnerships betweenthe various sectors that have an influence on the social inclusion of people with mental health problems. The Declaration and ActionPlan emphasises that people with mental health problems and those close to them must be central to all these activities.

This briefing paper and accompanying Stigma:A Guidebook for Action have been designed toassist people in understanding discrimination,stigma and social exclusion as experienced bypeople with mental health problems whatthey are, why they matter, where they originate and in developing strategies and actions tofight them. It is addressed to all those who canreduce the discrimination, stigma and socialexclusion experienced by people with mentalhealth problems and by those close to them. This is all of us.

Both the briefing paper and Stigma: AGuidebook for Action were commissioned byHealth Scotland, the World Health OrganizationCollaborating Centre taking the lead on stigma and discrimination as part of the WHOEuropean Regions Mental Health in EuropeImplementation Plan 20052010. They havebeen written by researchers from the ScottishDevelopment Centre for Mental Health incollaboration with the Institute of Psychiatry at Kings College London, Rethink and ProfessorNorman Sartorius. Both resources draw on a mapping exercise and appraisal of anti-discrimination and anti-stigma activities takingplace across the WHO European Region.

1

Why focus on the discrimination, stigma and social exclusion experienced by peoplewith mental health problems and those close to them?

The term mental health problem is used throughout the briefing paper to include the experiences covered by the termsmental illness, mental disorders and mental ill-health.

1

2 Injustice and inequality

The United Nations Charter, to which all States within the WHO European Region are signatories, recognises:

the inherent dignity, worth, and equal and inalienable rights of all members of the human family.

Discrimination against people with mentalhealth problems and against those close to themtherefore runs directly counter to the Charter.

People with mental disorders around the world are exposed to a wide range of human rights violations. The stigmathey face means they are often ostracisedfrom society and fail to receive the carethey require Everyone has human rights and must be valued for his or her self-worth. States and internationalorganisations have a duty to uphold and protect these rights.

Human Rights and Equality ofOpportunity Consultation Report,Bamford Review of Mental Health and Learning Disability, NorthernIreland, 2007.

Negative discrimination is unacceptable on any ground, whether, for example, based ongender, age or ethnic background. This includesdiscrimination on the basis that someone has, or in the past has had, a mental health problem.Fighting the discrimination experienced bypeople with mental health problems and bythose close to them is central to working towardsa socially just society. In such a society, peoplewho have been diagnosed with a mental healthproblem would be able to participate fully asother citizens do in social and economic life.

They would have their views and contributionstaken as seriously as any one elses. They wouldnot be afraid of the reactions they might facewhen disclosing their experience of mentalhealth problems.

Discrimination on the basis that someone has orhas had a mental health problem often overlapswith discrimination on other grounds, for example,discrimination against those living in poverty andthose from certain ethnic backgrounds. It istherefore vital that those fighting any kind ofdiscrimination work together.

Where there is discrimination there is injustice and inequality

3Definitions

As terms, discrimination, stigma and socialexclusion can mean different things in differentcontexts. We use these three terms to mean the following:Discrimination means unfair treatment. Morespecifically, it involves making any distinction,exclusion, restriction or preference that:

has the purpose or effect of nullifying or impairing the recognition, enjoyment or exercise by all persons, on an equal footing, of all rights and freedoms (UN Human Rights Committee, Generalcomment 18(37)).

Discrimination covers unintentional as well asintentional discrimination. Some laws canintentionally discriminate by removing the rights ofpeople with mental health problems, for exampleto vote or drive. An example of unintentionaldiscrimination would be when insurancecompanies charge all people with a particularmental health problem higher premiums throughmistakenly assuming that they are all a higher risk.

Policies, laws, public and privately ownedorganisations and individuals can all, in differentways, discriminate against people with mentalhealth problems. It has even been argued thatdiscrimination against people with mental health problems is so far reaching that it could be called structural discrimination [3].Structural discrimination refers to the prejudiceand discrimination that occurs not just betweenindividuals but at the level of organisations and institutions.

Stigma involves people making unfair moraljudgments about other people [4]. Negativejudgments and labels can be attached to mentalhealth problems in a wide variety of ways:

through blaming people for their mentalhealth problems shaming people for theirmental health problems not wanting to get close to them fearing them callingthem names talking behind their back laughing about them people thinking theyhave nothing in common with people withmental health problems considering mentalhealth problems embarrassing or disgraceful thinking people with mental healthproblems are childlike thinking they are unintelligent and in other ways.

My mental condition is no longer the problem for me. It is othersperceptions of me thats the difficulty.Without knowing it, or even meaningto, it is the general publics perceptionof my condition which is what reallycauses me pain and embarrassment .

The term stigma was used by the sociologistErving Goffman in the 1960s to refer to an attribute that is deeply discrediting. The attribute whether it actually exists or is presumed to exist reduces the person from a whole and usual person to a tainted, discounted one [5].

The stigmatising phrase a schizophrenic, forexample, reduces the person to an illness. Itmakes it easier for the person using this phraseto maintain a distance from someone thought of as not fully human. In comparison, the non-stigmatising phrase a person withschizophrenia recognises the person beyond the medical diagnosis.

2

What are discrimination, stigma and social exclusion?

All first person quotations in this resource are from people with experience of mental health problems and draw onresearch projects undertaken by Rethink, the Scottish Recovery Network, see me and Professor Graham Thornicroft.

2

4 Definitions

Stigma allows people to distance themselvesfrom people whom they stigmatise. This results inisolation and rejection for those people who arestigmatised; it also reinforces the power that theperson who stigmatises has over those people.

People with mental health problems frequentlyinternalise negative beliefs and feelings abouttheir status and worth even if they have notdirectly experienced discrimination. This hasbeen called self-stigma [6]. Self-stigma can resultin a loss of self-belief and self-confidence andfeelings of worthlessness. This makes it far moredifficult for people to challenge discriminatoryattitudes and behaviour within society at large,and can also make the symptoms of their mentalhealth problems worse.

Social exclusion means a person is preventedfrom taking part to the extent that he or shewould like in the normal activities undertaken by others in their society [7]. For a person with a mental health problem, social exclusion canresult from a variety of factors:

lack of status, joblessness, lack ofopportunities to establish a family, small ornon-existent social networks, compoundingrace or other discriminations, repeatedrejection and consequent restriction of hope and expectation [8].

Making sure that people with mental healthproblems can take part equally in society istherefore not just about reducing the povertythat many experience. What people also requireis access to a range of social and economicopportunities, respect from others, and therecovery of a sense of hope.

I was just twenty years old when my consultant psychiatrist told me I would never work again. It is souldestroying to be told by a professional,someone I looked up to and who wasthere to help, that you wont work orachieve anything in life.

It is clear from these descriptions thatdiscrimination, stigma and social exclusion are linked processes creating a cycle of injustice(see Figure 1). People holding stigmatisingattitudes will frequently discriminate againstpeople with mental health problems, and thisdiscrimination can result in social exclusion.Social exclusion can also intensify stigma: the more that a particular group is sociallyexcluded, the greater the stigma that can beassociated with that group homeless peoplewith mental health problems, for example.

5The cycle of injustice

People with those differencesare isolated, rejected and unableto participate and contribute in theway that everyone else is able to.

Social ExclusionThe person with schizophrenia isunable to get a job, is cut off fromparticipating fully in society; thesymptoms of schizophrenia becomeharder to deal with.

Certain differences (or imagineddifferences) are labelled orpointed out. They are givennegative associations.

Stigmae.g. Schizophrenics are violent.

People with those differences(them) are separated out fromeveryone else (us).

Discriminatione.g. I dont want to have anythingto do with a schizophrenic:I wont hire him.

Figure 1 The cycle of injustice

6 Operation

Various models have been developed tounderstand how discrimination, stigma and social exclusion operate.

Most of these distinguish between peoplesattitudes and their behaviour towards peoplewith mental health problems. One way has beento describe discrimination, stigma and socialexclusion as being caused by three overlappingfactors [9]: Ignorance: the problem of knowledge. Most

people do not know very much about mentalhealth problems, and much of what they doknow or think they know is inaccurate.

Prejudice: the problem of negativeattitudes. People fear and avoid other peoplewith mental health problems; people withmental health problems anticipate fear andavoidance from other people.

Behaviour: the problem of discrimination.People act towards people with mental healthproblems in ways that are unjust and unfair.

Different kinds of actions are required tochallenge each of these three sources ofdisadvantage. It cannot be assumed thattackling one will on its own reduce the impact of the other two factors.

There are different ways in which individuals andorganisations can act to combat discrimination,stigma and social exclusion. While some willwant to argue for improved laws to ensure thatwhere unjust behaviour occurs it is challenged,others will want to provide opportunities formore contact between people with mentalhealth problems and other people in order to reduce fear and prejudice.

There is no place within society where it is not possible to contribute to the fight againstdiscrimination, stigma and social exclusion.

How do discrimination, stigma and social exclusion operate?

7Why tackle the problem?

because tackling them can and will make a difference

It has commonly been thought that there is no way of overcoming discrimination againstthose with mental health problems. But in factaction can be taken.

because discrimination, stigma and social exclusion are unacceptable

Fighting discrimination, stigma and socialexclusion is a moral imperative.

because tackling them brings numerousbenefits to individuals with mental healthproblems, those close to them and widersociety

People with mental health problems describethe effects of stigma and discrimination assevere, and more difficult to deal with than themental health problem itself [10]. Discriminationand stigma puts obstacles in the way of peoplesrecovery, can make the symptoms of the mentalhealth problem worse, and can prevent peoplefrom seeking help when they are in distress.Reducing discrimination, stigma and socialexclusion therefore has the potential tosignificantly improve the quality of life of thosewith mental health problems.

Once I stopped viewing my illness asa problem, I stopped being scaredabout what other people would think. Now I can be more open and Imable to challenge those who are readyto write off others just because theyhave mental health problems.

Family members, carers and those close topeople with mental health problems can alsoexperience stigma and discrimination and can internalise damaging feelings of guilt andshame. Reducing discrimination will thereforereduce negative impacts on the physical andmental health of people close to someone with a mental health problem.

because every member of society will benefit

Societies in which there is less discrimination,and therefore less marginalisation of variousgroups tend to be more healthy as well as morejust societies. Research drawing on data from a number of countries [11] indicates that lessunequal societies do better on a wide range ofmeasures including physical health as well associal outcomes. Changes in legislation, policyand resource allocation can result in substantialimprovements in the mental health of all citizens.Social policies that promote social support andinclusion and that prevent social exclusion playan important role in promoting the mentalhealth of everyone [12].

Discrimination, stigma and social exclusionhave enormous social and economic costs forindividuals, their families, and society. The cost to society includes the loss of the skills andtalents of people with mental health problemsbecause discrimination excludes them fromcontributing and participating [13].

Why tackle discrimination, stigma and social exclusion?

8 Day-to-day life

The discrimination, stigma and social exclusionexperienced by people with mental healthproblems and those close to them can occur in virtually every area of life. It is important to identify those areas where these are mostlikely to occur because only then can we mosteffectively prioritise and design actions tocombat their causes and effects. For example:Employment: people with mental healthproblems tend to have the lowest rates ofparticipation in the workforce, despite being keen to work. European studies of employmentfor people with schizophrenia, for example,report rates of between 10% and 20% [14]. People with mental health problems experienceboth direct discrimination (prejudicial behaviourfrom employers and colleagues) and indirectdiscrimination (e.g. disincentives which workagainst the employment of people with mental health problems) [15]. In addition, the employment opportunities that are madeavailable to people with mental health problemscan result in segregating or socially excluding people from the rest of society.

Physical and mental healthcare: The behaviourand attitudes of healthcare professionals inboth physical and mental health care settings can be unintentionally discriminatory. This mightinclude the use of cheaper treatments with moresevere side-effects, lowered expectations forrecovery and discriminatory behaviour towardspeople with particular mental health problems[16]. Research indicates that people with mentalhealth problems receive much poorer physicalhealth care as well as poorer mental health care,and that this can result in significantly highermortality and morbidity rates [17, 18].

Poverty and debt: In every country where thishas been studied, the majority of people withmore severe mental health problems arerelatively worse off financially. Discriminatorybehaviour by financial services in relation toaccess to insurance or in response to debt, forexample, can make financial difficulties worse.

Housing and homelessness: Landlords can beless willing to rent to people with mental healthproblems. People with mental health problemscan experience abuse and harassment fromneighbours, and be denied any choices overwhere they will live. The quality of public housing that is made available to them may beof comparatively poorer quality. Discriminationcan also make it much more difficult for peoplewith mental health problems to stay in their ownhomes, increasing the risk of homelessness [20].

Institutionalisation: Despite the impetustowards de-institutionalisation, many peoplewith mental health problems are still placed inlarge residential institutions too many of whichhave been found to commit breaches of humanrights and dignity. In addition large institutionsmay not be able to provide the same kinds ofopportunities for social and economic inclusionthat community-based forms of care and supportcan provide [21, 22].

Leisure, recreation, education and travel:People with mental health problems may alsofind they have fewer opportunities to take part in education, leisure, sports and social activities.People with mental health problems may berestricted from owning a driving licence,travelling or emigrating.

How do discrimination, stigma and socialexclusion affect peoples day-to-day lives?

9Day-to-day life

Family life: Research indicates that discrimination,stigma and social exclusion affect the chancesthat people with mental health problems have to marry and to engage in intimate relationships,and their opportunities to have and retaincustody of their children.

Civil life: In many countries, people with mental health problems may be denied theopportunities to vote, to serve on a jury, holdofficial positions, own property and sign legalcontracts. People under guardianship (the legal framework within which decisions are made on behalf of people judged to lackcompetence in an area of their life) may lose all their legal rights.

Safety: People with mental health problems areat greater risk of being the victims of violenceand of sexual exploitation but also less likely tobe believed if they report that they have beenvictims of crime.

Criminal justice system: Individuals withmental health problems are often over-represented in prison populations [23, 24], and mental health care within prisons is often not of high quality.

The media: The media create and sustaindiscrimination, stigma and social exclusionthrough repeatedly using negative andinaccurate representations of people with mental health problems and treatments formental health problems [19]. In television and in film, people with mental health problems tend to be separated out from other people and routinely associated with violence,unpredictability and irresponsibility.

To combat the discrimination, stigma and socialexclusion experienced by people with mentalhealth problems therefore requires concertedaction from people and organisations locatedacross a variety of fields.

Those within the mental health field whetherusers of mental health services, their families or those close to them, health professionals oradvocacy organisations can all act as a forcefor change. Collaboration with others outside of the mental health field is also a powerful tool. There are many people, groups andorganisations with whom to collaborate, for example: Politicians and policy makers Administrators Academics and universities Media professionals Artists and performers Businesses Lawyers Organisations and advocates concerned

with human rights and with other forms of discrimination and inequality

International agencies and donors Health and social care organisations.

10 How to tackle the problem

The mapping exercise and appraisal undertakento provide background information for thisbriefing paper and the Stigma: A Guidebook for Action showed the different ways in whichcountries across the WHO European Region were tackling discrimination, stigma and socialexclusion, reflecting their different cultural, social, economic and political contexts.

This underlines the importance of consideringtwo key questions before developing newprojects: What are the central issues relating to the

discrimination, stigma and social exclusionfacing people with mental health problems in the particular country, region or localcommunity? Building networks of people withmental health problems and those close tothem to act as a base for further actions mightbe a priority in one place. In another country,proposing a new anti-discrimination law mightbe more appropriate.

What are the potential levers or opportunitiesin the country, region or locality that mightprovide a way forward in fighting stigma anddiscrimination? Religious leaders, for example,may play a key role in shaping understandingof mental health problems. Existingemployment programmes to help people back into the workplace might be a strongmechanism for fighting social exclusion.

What we know about how to reduce discriminationWhile we know that discrimination, stigma andsocial exclusion are experienced by people withmental health problems and those close to them,and have theories as to why, we need moreresearch on which actions tackle them mosteffectively. Experts are increasingly arguing thatapproaches that combine a number of different

types of activity and at different levels (national,regional, local) will be most effective in producinglong-term change [25, 26].

The gaps in the evidence base, however,underline how important it is for activities aimed at tackling discrimination, stigma and social exclusion to build in both research and evaluation if we are to: find out about and learn as much as possible

from other similar activities before starting understand what worked and what did not

work in relation to the activity in order tocontribute to the evidence base and sharelearning with others.

In some cases, there may not be evidence ofwhether an activity or action works. Absence ofevidence does not mean that action should notbe taken. It is often possible to make a strongtheoretical or moral case for why action isnecessary (e.g. if new mental health legislation is required to replace outdated legislation thatdoes not adequately protect peoples humanrights).

What is becoming clearer is the importance and effectiveness of involving those who haveexperience of mental health problems, and thoseclose to them, at the heart of any anti-stigma oranti-discrimination activity. Face-to-face contactwith someone who can talk about theirexperiences of mental health problems appears to be a key ingredient in breaking down discrimination and stigma [27, 28].

How to tackle discrimination, stigma and social exclusion

11How to tackle the problem

TacticsAny approach to tackling discrimination, stigmaand social exclusion needs to acknowledge howbig the power differences are between peoplewith mental health problems and those whodiscriminate against them [29, 30]. Reducingdiscrimination must aim to reduce theseimbalances in social, economic and politicalpower between people with mental healthproblems and other citizens [31].

Various tactics used singly or in combination can be used to begin to achieve change.

Added impact can come from ensuring thatactivities aimed at tackling inequalities,discrimination, social exclusion and human rights abuses also include consideration ofdiscrimination and stigma occurring on thegrounds of mental health problems. Action to deal with discrimination should also beintegrated into work promoting mental healthand wellbeing and in programmes to preventmental health problems developing.

Influencing public opinionThe extent and unacceptability of discrimination,stigma and social exclusion against people withmental health problems and those close to them are often not widely acknowledged orrecognised.People are also often unaware of the impact that discrimination has on widersociety for example, through lost working days.To address this, various approaches have beenused to influence public opinion. For example:

Using the mediaFor example newspapers and journals, radio, TV,advertising and film. Examples of approachesinclude: Social marketing, that is, using marketing

principles and techniques to promote changesin attitudes to people with mental healthproblems [32].

Scotlands national anti-stigmacampaign see me has used a social marketing approach.

www.seemescotland.org.uk

Providing the news media with accurate data on recovery rates for mental healthproblems and guidelines for good reporting on mental health.

Establishing speakers bureaux: training peoplewith experience of mental health problems totalk to the news media and other organisations.

Awarding media prizes for positive andinnovative representations of mental health problems in film, TV and radio.

Complaining about stigmatisingrepresentations in the media.

BASTA (Bavarian Anti-Stigma-Action) in Germany runs SANE, an e-mail based Stigma Alarm Network. SANEuses direct mail campaigns to targetstigmatising TV series, films, newspaperreports and advertisements.

www.openthedoors.de/en/sane.php

12 How to tackle the problem

Exhibitions, festivals, performance artUsing the arts and culture can be a powerful way of provoking and engaging people who donot readily respond to mental health topics.

In Switzerland, the Sglbe Wgeli(Yellow Carriages) project works with the fact that yellow carriages werehistorically used to transport people withmental health problems to an asylum ormental hospital. A modern yellow vanstops to pick up passengers in varioustowns: passengers are asked about theassociations they have to the van andthen explore issues relating to mentalhealth problems. A video on mentalhealth problems runs inside the van.

www.gaelbewaegeli.ch

The arts and culture can also be used to combatsocial exclusion.

The Kwartiermakers festivals in theNetherlands use the arts and cultureas vehicles for social integration. Onenotable event involved a high profilechoreographer creating a piece forpublic performance with a dancecompany composed largely of peoplewith a psychiatric history.

www.kwartiermakersfestival-amsterdam.nl

Training and capacity buildingTraining courses to increase awareness of mentalhealth problems can also be developed.

Mental Health First Aid is a trainingcourse, first developed in Australia, withthe objective of improving the publicsawareness and understanding of mentalhealth. Scotlands Mental Health FirstAid course aims to help people:

preserve life where a person may be a danger to themselves or others

provide help to prevent a mentalhealth problem developing into a more serious state

promote recovery of good mentalhealth

provide comfort to a personexperiencing a mental healthproblem.

www.healthscotland.org.uk/smhfa/index.cfm

Convincing and advocatingThose with power need to be convinced to takeconcerted action to combat the discrimination,stigma and social exclusion experienced bypeople with mental health problems. Whichorganisations and which individuals need to be convinced will vary according to the political,economic and cultural context. It is important to embed this work in broader equalities andhuman rights activities.

In 1990, the Ukrainian PsychiatricAssociation (UPA), a non-governmentalorganisation (NGO), founded its ExpertsCommission to offer social and legalassistance to service users and theirfamilies. The Commission provides legalassistance, independently monitors

13How to tackle the problem

psychiatric facilities, and regularlyinforms the mass media, legal and law-enforcement authorities of the rights of people with mental health problemsin Ukraine.

www.upa-psychiatry.org.ua

Communicating with and persuading policymakers and administratorsIn order to put mental health at the heart ofpublic policy. This means ensuring both thatmental health services are committed to socialinclusion as well as convincing a whole range ofservices education, housing, leisure, communityservices to prioritise social inclusion and reducediscrimination. Activities might include: Running a policy workshop Developing a local policy forum Working to raise social care allowances

or pensions Working to improve the provision and

quality of services.

Active lobbying by the GeorgianAssociation for Mental Health (GAMH)resulted in the launch of psycho-socialrehabilitation programmes in threepsycho-neurological dispensaries andone psychiatric hospital.

Hamlet Trust www.hamlet-trust.org.uk

The Hamlet Trust c/o Mental Health Foundation9th Floor, Sea Containers House20 Upper GroundLondon SE1 9QBUnited Kingdom

tel: +44 (0)20 7803 1160 fax: +44 (0)20 7803 1111

The Hamlet Trust supports the developmentof community-based and user-led mentalhealth initiatives. Since 1990, it has worked to establish, support and develop a network of member organisations (which now number more than 50 and which are all non-governmental organisations, or NGOs)throughout Central and Eastern Europe and Central Asia. Hamlets aim is that these organisations are both based in their communities and are led by service-users themselves.

Resource: Bureau J, and Shears J, Pathways to Policy: A toolkit for grassroots involvement in mentalhealth policy, 2006. Hamlet Trust Toolkits,Hamlet Trust: London (available for downloadfrom website).

This toolkit provides a tried-and-testedframework for establishing policy fora thatallow people with mental health problems tohave a real voice in policy making. It includestraining materials that can be applied in awide variety of contexts.

14 How to tackle the problem

Developing projectsMany kinds of projects can be developed and processes put in place to reduce thediscrimination, stigma and social exclusionpeople with mental health problems currentlyexperience in many different areas of their lives. For example:

Employment and the workplaceWorkplace projects focus both on the reintegrationof workers who have experienced stress-relatedillnesses, and supporting the return to work forpeople with severe mental health problems.Research indicates that for people who haveexperienced severe mental health problems,supported employment i.e. real work inintegrated work settings, rather than shelteredworkshops appears to be more effective interms of supporting people to achieve andmaintain employment [33].

Housing, deinstitutionalisation and homelessnessSupported housing and appropriate community-based residential alternatives can provide thefoundations for people with severe mental healthproblems to participate fully in society.

In Kyrgyzstan, the Open Society MentalHealth Initiative and Habitat for Humanityare working in partnership to offer goodquality housing and support services topeople with mental health problems andtheir families, in order to provide analternative to institutionalisation.

European Coalition for Community Living(ECCL)www.community-living.info

The ECCL is a Europe-wide initiative workingtowards the social inclusion of people withdisabilities.

Resource: Freyhoff G, Parker C, Cou M, and Grieg N,Included in Society: Results andRecommendations of the European ResearchInitiative on Community-based ResidentialAlternatives for Disabled People, 2004. EuropeanCoalition for Community Living: Brussels(available for download from the ECCL website).

This report provides policy recommendationsand case studies in relation to de-institutionalisation and the provision of community-based care and support.

Broader employment-related programmesand initiatives can be used to strengthen thecase for as well as fund mental healthrelated anti-discrimination activities.

For countries within the EU:Progress: the EU programme for employmentand social solidarity 20072013www.ec.europa.eu/employment_social/progress/index_en.htm

This is designed to create more and betterjobs, and to offer equal opportunities for all through modernising social protection,combating poverty, and promoting socialinclusion, diversity and non-discrimination.

15How to tackle the problem

Involving consumers of mental health services Involving people who use mental health servicescan both combat social exclusion and providenew perspectives on how services can beorganised to improve the quality of life of people with mental health problems.

Klimaka, an NGO in Athens whose work has been listed in Greeces BestPractices of the Community SupportFramework, creates opportunities forsocially excluded groups (includingpeople with mental health problems,homeless people and people who have experienced domestic violence) to participate in society rather thansimply to receive help and services. 30% of Klimakas staff comprise people from the socially excluded groups with which they work.

www.klimaka.org.gr andwww.klimaka-cosmos.net

There are increasing opportunities for users of mental health services to be involved indeveloping consumer-run services and in carryingout research in relation to mental health care.

SURE, the Service User ResearchEnterprise at the Institute of Psychiatry,Kings College London, is a partnershipbetween researchers who are or whohave been mental health service usersand clinical academic staff that aims toinvolve service users in all aspects ofresearch. It also provides training forservice users to allow them to developskills to undertake research.

www.iop.kcl.ac.uk

Using the lawUsing the law can be a very powerful means of upholding human rights and of combatingdiscrimination and social exclusion. Legislationcan include human rights laws and treaties; lawsto prevent discrimination on grounds of mentalhealth problems or disability; as well as mentalhealth legislation.

International and country-specific human rights legislationTo protect the rights of all citizens, includingpeople with experience of mental healthproblems. Examples include United Nationstreaties and Council of Europe treaties (see page 23 Supporting instruments, principles and policies for more detail).

National anti-discrimination legislationNational level laws intended to tacklediscrimination on the basis of disability in arange of different areas of social and economiclife should ensure that discrimination due tomental health problems is adequately targeted.

The United Kingdom has a DisabilityEquality Duty, which is designed toensure that all public bodies (includinggovernment, schools and the healthsector) put in place actions to promoteequality for disabled people in everyarea of their work.

www.dotheduty.org

Making organisations responsible for combatingdiscrimination can be more powerful thanregulations that demand an individual takeaction when discrimination has taken place.

16 How to tackle the problem

Laws can also focus on tackling discrimination,including discrimination on the grounds of mentalhealth problems, in particular areas of life, such asaccess to employment. See, for example, the IrishEmployment Equality Act 1998.

Mental health lawsLegislation specifically focusing on protectingand promoting the human rights of people witha mental health problem in relation to treatmentand care can also be used for making it illegal to discriminate against someone on the basisthat they currently have or have had a mentalhealth problem.

Republic of Lithuania: Law on MentalHealth Care, June 1995 (no I-924)(amended July 2005 No. X-309). Article3 specifically prohibits discriminationagainst the mentally ill.

www3.lrs.lt

Mental health laws can be used, as in Scotland,to promote the social inclusion of people with a mental health problem.

Scotland: Mental Health (Care andTreatment) (Scotland) Act, 2003. ThisAct includes provisions to promote thesocial inclusion of people with mentalhealth problems. Guidance to helppublic authorities to meet theirresponsibilities under the legislationunderlines the importance of taking aninclusive approach, that is making useof the same services that are availableto the rest of the population

(See: Inclusion in Mind: the Localauthoritys role in promoting wellbeingand social development: Mental Health(Care and Treatment) (Scotland) Act2003 Sections 2531

www.scotland.gov.uk/Publications/2007/10/18092957/0

International laws, declarations, conventions,principles and instruments can be used to fightthe abuse and discrimination experienced bypeople receiving psychiatric treatment and care particularly those undergoing compulsorytreatment or those who are institutionalised.

Ensuring people know their legal rightsPeople with mental health problems can only use the law if they know their rights, so action to increase awareness is a key way of tacklingdiscrimination.

In the Czech Republic, a manual hasbeen produced that familiarises peoplewith mental health problems with theirrights (for example when they are inhospital, as well as later care). It isproduced for people with mental healthproblems, rather than for social workersor other professionals, to promoteindependent decision-making and touphold human rights.

www.mentalhealth-socialinclusion.org/good-practices.html

17How to tackle the problem

Mental Disability Advocacy Centre (MDAC)www.mdac.info

H-1088 Budapest, Rkczi t 27/BH1088 BudapestHungarytel: +36 1 413 2730 fax: +36 1 413 2739email: mdac@mdac.info

MDAC advances the human rights of childrenand adults with actual or perceived intellectualor psycho-social (mental health) disabilities.Focusing on Europe and Central Asia, it uses acombination of law and advocacy to promoteequality and social integration.

MDAC is challenging guardianship laws (thatoutline how decisions are made on behalf ofpeople who are judged to lack competence inan area of their life) in Bulgaria, Croatia, theCzech Republic, Georgia, Hungary, Kyrgyzstan,Russia and Serbia. To do so, MDAC appeals to the UN Convention on the Rights ofPersons with Disabilities, countriesratification of the European Convention on Human Rights, and their membership of the Council of Europe (which brings theexpectation of compliance with soft lawsuch as Rec No R(99)4 Principles Concerningthe Legal Protection of Incapable Adults).From these sources, MDAC has developed 29 indicators that capture basic safeguardsnecessary for a person-centred guardianshipsystem that respects human rights.

World Health Organization focus on MentalHealth, Human Rights and Legislationwww.who.int/mental_health/policy/en

Resource: WHO Resource Book on Mental Health, HumanRights and Legislation, 2005. World HealthOrganization: Geneva (available for downloadfrom their website, above).

The Resource Book assists countries indrafting, adopting and implementing mentalhealth legislation that places the policies andplans in the context of internationallyaccepted human rights standards and goodpractices. It includes a Checklist on MentalHealth Legislation that helps countriesassess whether key components are includedin legislation, and ensures that the broadrecommendations contained in the ResourceBook are examined and considered.

WHO-Mind Project (Mental HealthImprovements for Nations Developmentwww.who.int/mental_health/policy/en

The WHO-Mind Project provides informationsheets on: Promoting the rights of people with mental

disabilities. Supporting countries to develop human rights

oriented mental health laws. Supporting countries to establish mechanisms

to monitor human rights in mental healthfacilities.

18 How to tackle the problem

Actions can be taken at different levelsActions and activities can take place at differentlevels. Some actions can take place at more than

one level as part of a multi-faceted, multi-levelprogramme against discrimination, stigma and social inclusion.

Some actions can be targeted at one particularlevel.

International levelSome actions demand alliances and partnershipsthat extend beyond national boundaries. Forexample, partnerships across the world betweenorganisations focusing on physical disabilitiesand those specifically concerned with mentalhealth problems were central in bringing aboutthe recently signed UN Convention on the Rightsof Persons with Disabilities.

The World Psychiatric Association (WPA) Openthe Doors Global Programme against Stigmaand Discrimination because of Schizophreniaapplies the learning from actions in particularcountries to actions in other participatingcountries.

National, devolved, and regional levelAppropriate activities might include: Implementing anti-discrimination laws

and action plans and ensuring they areapplied to mental health problems as well as physical disabilities

Drawing up and implementing a nationalmental health action plan

Drawing up and implementing a national anti-stigma action plan

Providing economic incentives rather thandisincentives for people ready to return to work.

Local levelActivities might include: Working with communities (e.g. festivals). Working with particular groups to reduce

discriminatory and stigmatising practices. Encouraging and supporting consumer

and family led organisations.

Individual/family levelSelf-stigma can be addressed through supportgroups for people with mental health problemsand for their families.

Actions can be targeted at different groupsOne approach is to focus on the wholepopulation (for example, Scotlands national seeme anti-stigma campaign); another approach isto target particular sectors of the population.These approaches can be used in combination.

Particular sectors that have been targetedinclude: Medical staff (including emergency room

physicians, medical students, generalphysicians, psychiatrists, nurses)

Employers Community leaders Employers Landlords Police and corrections officers Teachers Politicians, legislators and administrators Families of people with mental health problems Social service workers Church leaders School children and students Media/journalists.

19How to tackle the problem

In Poland, the Local Action Group fromthe WPA Open the Doors campaign hasworked with psychiatrists and clergy inan educational programme for clergy.Clerics and monks within the RomanCatholic Church have sponsored fund-raising activities to assist in housing for people with schizophrenia.

www.openthedoors.com

Actions can focus on a particular mental health problem or on all mental health problemsActions and activities sometimes tacklediscrimination and stigma relating to disability in general (which includes mentalhealth problems alongside physical disabilities).Other actions can focus on the discriminationand stigma related to all mental healthproblems, or it can focus specifically on particular health problems.

Anti-discrimination legislation is most powerfulwhen it uses a very wide definition of disability.

The Irish Employment Equality Act 1998 states:

disability shall be taken to include a disability which exists at present, orwhich previously existed but no longerexists, or which may exist in the futureor which is imputed to a person.

This definition recognises that people canexperience discrimination even withouthaving any diagnosis of a mental healthproblem, and that people can continue toexperience discrimination even when theyno longer have a mental health problem.

In other contexts, focusing on particularconditions might be more effective. For example,the WPA Open the Doors programme decidedto focus specifically on schizophrenia because itwas felt that stigma related to schizophrenia ismore severe than that related to other mentalhealth problems [34].

It is also important to recognise thediscrimination experienced by people who aredoubly disadvantaged for example, refugees ormigrants with mental health problems, peoplewith mental heath problems from differentethnic communities, people with mental healthproblems who are lesbian, gay or bisexual, or ex-offenders who have a mental health problem.

Actions can use different ways ofthinking about mental health problemsAny action aimed at tackling discrimination,stigma and/or social exclusion will carry with it either explicitly or implicitly messages aboutwhat mental health problems are and what aworld without discrimination against people with mental health problems would look like. For example, several anti-stigma campaigns have emphasised how common mental healthproblems are in the hope that if peopleacknowledge how many people experiencemental health problems, they will be less fearfulof mental health problems. This is only oneapproach; other influential approaches include: The disability rights/social inclusion model The use of human rights arguments The recovery model The bio-medical model/brain disease model (in

which mental health problems are understoodto be an illness like physical illnesses).

20 How to tackle the problem

The disability rights/social inclusion modeluses a social model of disability. This focuses on the barriers within society that dis-able people.Attention is given here to dismantling theobstacles to their full participation in society[35]. This has the advantage of emphasisingpeoples rights to particular benefits or supports,rather than seeing benefits as an act of charityor pity. This approach is recognised in the UNConvention on the Rights of Persons withDisabilities which states that:

disability results from the interaction betweenpersons with impairments and attitudinal andenvironmental barriers that hinders their fulland effective participation in society on anequal basis with others.

Human rights arguments centre on a person witha mental health problem having the same humanrights as any other person. Programmes that takethis approach often target discrimination.

The recovery model emphasises that everyperson with a mental health problem is capableof pursuing a meaningful life, and that recoverymight well include acceptance of ongoingsymptoms. While recovery is seen as takingdifferent forms for different people, the recoverymodel underlines the importance of hope, andeach persons ability to take control over theirown life and to be an active participant in theirown health care.

The bio-medical model adopts a view thatmental illness is an illness like any other or that it is a brain disease. It relies on science to explain mental health problems as beingcaused by chemical imbalances or geneticabnormalities. This model can be powerful in

arguing for increased research and funding fortreatment for example for conditions such asAlzheimers disease.

We do not yet know which messages and modelsare most effective and with which groups ofpeople in reducing discrimination and stigma.A recent EU project on good practices forcombating social exclusion of people withmental health problems found that a recoverymodel alongside an approach thatacknowledged the combined impact of social,economic, psychological and biological factors on peoples mental health was most useful inpromoting social inclusion [36].

Anti-discrimination and anti-stigma programmescan be enhanced when tactics are used togetherand strengthen one another and are furthercombined with or embedded within wider workon social inclusion, equality and human rights.

In Scotland, for example, in addition to new mental health legislation, theNational Programme for ImprovingMental Health and Wellbeing: influences public opinion through the

national anti-stigma campaign see me influences policy and develops projects

through its initiatives designed toimprove and promote mental healthand wellbeing and prevent mentalhealth problems developing.

www.wellscotland.info/index.html

21Making it happen

There is a huge amount of work and manydifferent activities already going on within and across the WHO European Region to fightdiscrimination, stigma and social exclusion. The mapping activity for this briefing paperreceived material on over 34 different activitiesfrom 26 countries (out of 53) within the WHOEuropean Region.

Stigma: A Guidebook for Action thataccompanies this briefing paper provides more detail about the actions that can be taken. The following describes some of the key steps for consideration.

Developing a strategyIn planning actions it is crucial to identify: which tactic(s) will be used at which level(s) targeted at which group(s) in relation to which mental health problem(s) with which model(s) or message(s)

(see Figure 2 on page 22).

Timeline Ongoing, multi-level activities are most

effective. But this does not mean that everything has

to happen all at once: often smaller activitiescan ignite peoples interest and commitmentto further action. If a clear strategy is in place, smaller, more short-term activities can be effective.

Keeping the momentum going: Considerationmust be given to what is needed in terms ofongoing financial resources and thecontributions of individuals and organisations for the effects of anti-discrimination activities tolast. Establishing partnerships can improve thechance of an activity being able to continue.

Allies and collaboration Actions and activities can build on or

strengthen existing initiatives taking place at a national, regional or international level (seeSupporting instruments, principles and policieson page 23 for some international examples).

Collaboration with other organisations canincrease the effectiveness of activities. The recent EU project Good Practices forCombating Social Exclusion of People withMental Health Problems indicated the value of a broad range of interest groups workingtogether on issues of discrimination and stigma. www.mentalhealth-socialinclusion.org/home.html

Resources Anti-discrimination and anti-stigma actions

need and deserve resources both financialand in terms of people.

Resources can come from a variety of sources, and not necessarily just from the mental health sector.

Resources can be financial, but can alsoinclude:

the provision of staff time contacts with decision makers access to databases access to technology or other

infrastructure the provision of free television slots.

EvaluationResearch and evaluation need to be built in toactivities to add to what we know and so that wecan learn from each other. While many activitiesmay not have the resources to undertakedetailed and rigorous evaluations, projectsshould be able to identify what the activity istrying to change, how it is going to go aboutchanging it, and what change would look like.

Making it happen

22 Making it happen

FIGURE 2: DEVELOPING A STRATEGY TO TACKLE DISCRIMINATION, STIGMA AND SOCIAL EXCLUSION

Influencing public opinion, e.g. Using the media Exhibitions/festivals Training/capacity building

Convincing/ advocating, e.g. Advocacy Persuading policy makers

Developing projects, e.g. Workplace Housing De-institutionalisation Homelessness Involving consumers of

mental health services

Using the law, e.g. Human rights legislation National anti-discrimination

legislation Mental health laws International laws,

declarations and conventions Ensuring people know their

legal rights

TACTICS CAN BE COMBINED.

WHICH TACTIC(S)?

International

National/devolved/regional

Local

Individual/family

MORE THAN ONE LEVEL CAN BE USED.

AT WHICH LEVEL(S)?

The whole population

Sections of the population, e.g. Medical staff Employers Community leaders Employers Landlords Police/corrections officers Teachers Politicians/legislators Families of people with

mental health problems Social service workers Church leaders School children Media/journalists

MORE THAN ONE GROUP CAN BE TARGETED.

TARGETED AT WHICH GROUP(S)?

Disability in general (includingmental health problems)

All mental health problems

Particular mental healthproblems, e.g. Schizophrenia Depression Mental health problems in

children and young people

IN RELATION TO WHICHMENTAL HEALTH PROBLEM(S)?

e.g.

Disability rights/social inclusionmodel

Human rights arguments

Recovery model

Bio-medical model

MORE THAN ONE MODEL AND/ORMESSAGE CAN BE USED.

WITH WHICH MODEL(S)OR MESSAGE(S)?

23Supporting mechanisms

Existing international legislation, policy andhuman rights principles can assist actions inreducing discrimination, stigma and socialexclusion on the grounds of mental healthproblems.

United NationsUnited Nations treaties impose legally bindingobligations on those states that ratify them.They include: Universal Declaration of Human Rights (UDHR) International Covenant on Civil and Political

Rights (ICCPR) International Covenant on Economic, Social

and Cultural Rights (ICESCR) Convention Against Torture and Other

Cruel, Inhuman or Degrading Treatment or Punishment (CAT).

Of particular relevance is the UN Convention on the Rights of Persons with Disabilitieswww.un.org/disabilities

The Convention, which opened for signature on 30 March 2007, demands that signatories

take all appropriate measures to eliminatediscrimination on the basis of disability byany person, organisation or private enterprise,and to adopt immediate, effective andappropriate measures to combat stereotypes,prejudices and harmful practices relating topersons with disabilities in all areas of life.

Notably, the Convention requires States Parties to: foster in all educational settings, including

those from an early age, respect for the rightsof those with disabilities

encourage the media to use appropriaterepresentations of people with disabilities

conduct awareness raising campaigns promote appropriate training for police and

prison staff to ensure access to justice for those with disabilities.

Council of EuropeKey Council of Europe treaties and guidelinesinclude: European Convention on Human Rights. European Social Charter (which protects a

range of social and economic rights includingthe right to work).

European Convention on the Prevention ofTorture and Inhuman or Degrading Treatmentor Punishment.

REC(2004)10 Guidelines concerning theprotection of the human rights and dignity of persons with mental disorder.

The Mental Disability Advocacy Centreswebsite provides a comprehensivecollection of mental disability rights inEurope, including the texts of relevantinstruments and summaries of mentaldisability cases decided by the EuropeanCourt of Human Rights. A goodsummary of the legislation required tosupport mental health policy thatprotects peoples human rights isprovided by Camilla Parker [37].

www.mdac.info

Supporting instruments, principles and policies

24 Supporting mechanisms

WHO European RegionAs well as the WHO Mental Health Declarationand Action Plan, other WHO initiatives in Europealso support anti-discrimination work, forexample:

Schools for Health in Europe (SHE) is a European network for school healthpromotion providing access toinformation, good practices andcontacts. The networks principles ofequity and access seek to ensure that a health-promoting school is genuinelysocial inclusive and able to foster theemotional and social development ofevery individual, enabling each to attainhis or her full potential free fromdiscrimination.

www.schoolsforhealth.eu

European Union (EU)In 2005 the European Commission commissionedits Green paper on Improving the Mental Healthof the Population: Towards a strategy on MentalHealth for the European Union. Following aconsultation period, the European Commissionhas announced that a high level conference to beheld in June 2008 will inform the development ofa Mental Health Pact. This will focus specificallyon suicide, school education, workplaceenvironment, young and elderly people.

The EU Directive on Employment (2000)Article 13 requires EU Member States to pass laws debarring employmentdiscrimination on grounds that includedisability; they are also required to setup institutions that will ensureenforcement.

europa.eu/scadplus/leg/en/s02311.htm

The Lisbon Strategy commits Member States togenerating more and better jobs and promotingsocial cohesion. Member States are expected toinvest in education and training and to conductan active policy for employment.

Fighting the discrimination, stigma and socialexclusion experienced by people with mentalhealth problems and by those close to them is both a challenge and an imperative if we areto achieve socially just societies which value,protect and promote the rights of all citizens.This may take the form of small local festivals

or nationwide multi-level campaigns: all have a vital role to play in tackling the injusticescurrently experienced by people with mentalhealth problems and by those close to them.Even small changes add up and lay thefoundations for bigger changes. What isimportant is that action is taken.

A call to action

25More information

Places to go for more information

Organisations

Below are additional organisations, programmesand resources that are targeted towards fightingthe discrimination, stigma and social exclusion ofpeople with mental health problems and thoseclose to them.

Amnesty Internationalwww.amnesty.org1 Easton StreetLondon WC1X 0DWUnited Kingdomtel: +44 (0)20 7413 5500fax: +44 (0)20 7956 1157

ENUSP (European Network of (Ex-)Users and Survivors of Psychiatry)www.enusp.orgZabel-Krger-Damm 183D13469 BerlinGermanytel: +49 30 8596 3706email: desk@enusp.orgENUSP is a grassroots umbrella organisation on a European level that brings together nationalorganisations of (ex-)users and survivors ofpsychiatry to communicate and to support one another in fighting injustice, expulsion andstigma in the members respective countries.

EUFAMI (European Federation of Associationsof Families of People with Mental Illness)www.eufami.orgDiestsevest 100B3000 LeuvenBelgiumtel: +32 16 74 50 40fax: +32 16 74 50 49email: info@eufami.orgEUFAMI comprises 42 family associations (across26 European countries and one non-European

country) representing families and carers ofpeople living with severe mental health problems.ZeroStigma is EUFAMIs campaign to replaceprejudice, ignorance and fear of people withmental health problems with acceptance,knowledge and understanding.

European Observatory on Health Systems and Policieswww.euro.who.int/observatoryThe European Observatory on Health Systemsand Policies supports and promotes evidence-based health policy-making throughcomprehensive analysis of the dynamics ofhealth care systems in Europe. Their work onmental health policy addresses the ongoingmove towards community-based care, and howbarriers to system reform may be overcome.

Resource: Knapp M, McDaid D, Mossialos E,Thornicroft G, (eds) Mental Health Policy andPractice across Europe: The future direction of mental health care, 2007. Open UniversityPress: Maidenhead (available for downloadfrom the European Observatory website).The book addresses the legal rights of peoplewith mental health problems, the impact ofdiscrimination, stigma and social exclusion, and approaches to the reform of services across Europe.

Implementiswww.implementis.euAn online resource for mental health advocacyin Europe developed by the InternationalLongevity Centre-UK working together withEUFAMI. It is designed to assist users, carers,healthcare professionals and government policy makers in reviewing existing mentalhealth policies and services and lobbying for new areas for action.

26 More information

Hamlet Trust www.hamlet-trust.org.ukThe Hamlet Trust c/o Mental Health Foundation 9th Floor, Sea Containers House 20 Upper Ground London SE1 9QBUnited Kingdomtel: +44 (0)20 7803 1160 fax: +44 (0)20 7803 1111 The Hamlet Trust supports the development ofcommunity-based and user-led mental healthinitiatives. Since 1990, it has worked to establish,support and develop a network of memberorganisations (which now number more than 50and which are all non-governmental organisations,or NGOs) throughout Central & Eastern Europeand Central Asia. Hamlets aim is that theseorganisations are both based in their communitiesand are led by service-users themselves.

Resource: Bureau J, and Shears J, Pathways to Policy: Atoolkit for grassroots involvement in mentalhealth policy, 2007. Hamlet Trust Toolkits,Hamlet Trust: London (available for downloadfrom website).

This toolkit provides a tried-and-testedframework for establishing policy fora that allowpeople with mental health problems to have areal voice in policy making. It includes trainingmaterials that can be applied in a wide varietyof contexts.

Health Scotlandwww.healthscotland.comWoodburn HouseCanaan LaneEdinburgh EH10 4SGUnited Kingdomtel: +44 (0)131 536 5500fax: +44 (0)131 536 5501email: general_enquiries@health.scot.nhs.uk

Health Scotland is Scotlands healthimprovement agency. Funded by the ScottishGovernment, it aims to support populationhealth improvement and promotion and tacklehealth inequalities.Health Scotland is the WHO Europe CollaboratingCentre taking the lead on mental health relatedstigma and discrimination as part of the WHOEurope Regions Mental Health in EuropeImplementation Plan 20052010.

Mental Health Europewww.mhe-sme.orgMental Health Europe7 Boulevard ClovisB1000 BruxellesBelgiumtel: +32 2 280 0468fax: +32 2 280 1604email: info@mhe-sme.orgMental Health Europe (MHE) supports theemancipation of different groups in the mentalhealth field in order to establish equal positionsbetween the different parties and to ensure thatmental health activities and mental health carereally meet the needs of the population. It hasdeveloped a range of projects centring on socialinclusion and anti-discrimination.

Resource: www.mentalhealth-socialinclusion.orgThe website reports on the MHE-led EU ProjectGood practices for combating social exclusion of people with mental health problems. Itincludes an online database of best practice for combating social exclusion drawn fromprojects in Belgium, Cyprus, Czech Republic,France, Ireland, Italy, Poland, Slovakia, Slovenia, and the UK.

27More information

The National Programme for ImprovingMental Health and Wellbeingwww.wellscotland.infoNational Programme TeamScottish GovernmentSt Andrews HouseRegent RoadEdinburgh EH1 3DGUnited Kingdomtel: +44 (0)131 244 2551email: well@scotland.gsi.gov.ukThrough a number of different initiatives theNational Programme aims to improve the mentalhealth and wellbeing of everyone in Scotlandand improve the quality of life and socialinclusion of people who experience mentalhealth problems.

Open Society Mental Health Initiativewww.osmhi.orgOpen Society InstituteOktber 6 u 12H1051 BudapestHungarytel: +36 1 327 3100fax: +36 1 327 3101The Open Society Mental Health Initiative (MHI)aims to ensure that people with mentaldisabilities (mental health problems and/orintellectual disabilities) are able to live in thecommunity and to participate in society with fullrespect for their human rights. MHI works inCentral and Eastern Europe and the former SovietUnion, and promotes de-institutionalisation andthe development of sustainable community-based services.

Rethinkwww.rethink.org5th Floor Royal London House2225 Finsbury SquareLondon EC2A 1DXUnited Kingdomtel: +44 (0)20 7330 9100email: info@rethink.orgRethink is a UK mental health voluntaryorganisation whose work includes activities toresearch and tackle stigma and discrimination.

Resource: www.rethink.orgHow can we make mental health education work?: Example of a successful local mental health programme challenging stigma anddiscrimination, 2006. Institute of Psychiatry/Rethink: Surrey (available for download from the website).The report describes the approach taken by onemental health awareness project in England toreduce discrimination and stigma experienced by people with mental health problems.

see mewww.seemescotland.org.uk913 Maritime StreetEdinburgh EH6 6SBUnited Kingdomtel: +44 (0)131 624 8945fax: +44 (0)131 624 8901email: info@seemescotland.org.uksee me is Scotlands national campaign to endthe stigma of mental ill-health. It was launchedin October 2002 and is run by an alliance of fiveorganisations.

28 More information

Resource: see me, A review of the First 4 Years of the Scottish Anti-stigma Campaign, 2008.see me: Edinburgh (available for downloadfrom the website).The review, available via their website, detailsthe way in which evidence and social marketingwere brought together to effect change.

Scottish Development Centre for Mental Healthwww.sdcmh.org.uk17a Graham StreetEdinburghEH6 5QNUnited Kingdomtel: +44 (0)131 555 5959fax: +44 (0)131 555 0285email: sdc@sdcmh.org.ukThe Scottish Development Centre for MentalHealth is a Non-Governmental Organisation which undertakes research and development work to support the mental health and well-being of individuals and communities and the improvement of services for people withmental health problems.

Support Project: Promoting the EU MentalHealth Agendawww.supportproject.eu/AboutSupport.htmScottish Development Centre for Mental Health (as previous)The Support Project is a collaborative project co-funded by the European Commission and ledby the Scottish Development Centre for MentalHealth with STAKES and Health Scotland. Together with other projects in the EuropeanUnion Public Health Programme, the SupportProject provides administrative, technical andscientific support to further the mental healthpriorities of the European Commission.

SMES-EUROPA (Sant Mentale Exclusion Sociale)www.smes-europa.orgemail: smeseu@smes-europa.orgSMES-EUROPA is a European Network thataddresses social exclusion as a structuralphenomenon within society. It works for the mental health and social rehabilitation of homeless people with mental healthproblems and socially excluded people.

Substance Abuse and Mental Health ServicesAdministration (SAMHSA) Resource Center toAddress Discrimination & Stigma Associatedwith Mental Illness (ADS Center) www.stopstigma.samhsa.govThis is a resource providing information and adviceon fighting the discrimination and stigmaassociated with mental health problems. Whilemuch of its material focuses on an Americancontext, it provides a comprehensive bibliographyof literature on addressing discrimination andstigma and other useful resources.

Resource: Substance Abuse and Mental Health ServicesAdministration. Developing a Stigma ReductionInitiative, 2006. SAMHSA Pub. No. SMA-4176.Center for Mental Health Services, SubstanceAbuse and Mental Health ServicesAdministration: Rockville, MD (available for download from website).This resource provides material on how to runanti-stigma and anti-discrimination initiatives. It draws on activities undertaken in eightAmerican states.

29More information

World Federation for Mental Health (WFMH)www.wfmh.org6564 Loisdale CourtSuite 301SpringfieldVA 22150-1812USAtel: +1 703 313 8680fax: +1 703 313 8683 email: info@wfmh.com The WFMH organises World Mental Health Dayand promotes the advancement of mentalhealth awareness and advocacy. It workstowards ensuring that public policies andprogrammes reflect the crucial importance ofmental health in the lives of individuals.

World Health Organization (WHO)www.euro.who.int/mentalhealthWHO Regional OfficeMental HealthScherfigsvej 8DK2100 CopenhagenDenmarktel: +45 39 17 13 91fax: +45 39 17 13 18 email: mentalhealth@euro.who.intThe Regional Offices mission is to supportMember States in: developing and sustainingtheir own health policies, health systems andpublic health programmes, working to preventand overcome threats to health, anticipatingfuture challenges, and advocating public health.

World Psychiatric Association (WPA) GlobalProgramme against Stigma and Discriminationbecause of Schizophrenia Open the Doorswww.openthedoors.comThe Open the Doors anti-stigma programme was set up in 1996 by the World PsychiatricAssociation (WPA) as an internationalprogramme to fight the stigma anddiscrimination associated with schizophrenia.The three aims of the programme are to: Increase the awareness and knowledge of the

nature of schizophrenia and treatment options. Improve public attitudes about those who have

or have had schizophrenia. Generate action to eliminate discrimination

and prejudice.Countries within the WHO European Region inwhich programmes exist include: Austria,Germany, Greece, Italy, Poland, Romania,Slovakia, Spain, Turkey and the United Kingdom.

Resource: Sartorius N, and Schulze H, Reducing theStigma of Mental Illness: A Report from aGlobal Programme of the World PsychiatricAssociation, 2005. Cambridge University Press: Cambridge.

The book documents the work of the WPAProgramme, and provides comprehensivedetails and advice about running various anti-stigma programmes in countries that areeconomically, politically and culturally diverse.

30 References

[1] World Health Organization, Mental Health Declaration for Europe: Facing theChallenges, Building Solutions, 2005.World Health Organization: Copenhagen.

[2] World Health Organization, Mental Health Action Plan for Europe: Facing theChallenges, Building Solutions, 2005.World Health Organization: Copenhagen.

[3] Corrigan PW, Markowitz FE, and WatsonAC, Structural Levels of Mental IllnessStigma and Discrimination. SchizophreniaBulletin, 2004. 30(3): p. 481491.

[4] Deacon H, Towards a sustainable theory of health-related stigma: lessons from theHIV/AIDS literature. Journal of Community& Applied Social Psychology, 2006.16: p. 418425.

[5] Goffman E, Stigma: some notes on themanagement of spoiled identity, 1963.Penguin: Harmondsworth.

[6] Corrigan P, and Watson A, The paradoxof self-stigma and mental illness. ClinicalPsychology Science and Practice, 2002.9: p. 3553.

[7] Burchardt T, Le Grand J, and Piachaud D,Social exclusion in Britain 19911995.Social Policy and Administration, 1999.33(3): p. 227244.

[8] Sayce L, Social inclusion and mentalhealth. Psychiatric Bulletin, 2001.25: p. 121123.

[9] Thornicroft G, Shunned: discriminationagainst people with mental illness, 2006.Oxford University Press: Oxford.

[10] see me, A fairer future: buildingunderstanding. Moving forward together,2007. see me: Edinburgh.

[11] Wilkinson R, The impact of inequality: how to make sick societies healthier,New ed. 2005. Routledge: London.

[12] Jan-Llopis E, and Anderson P, A policyframework for the promotion of mentalhealth and the prevention of mentaldisorders, in Mental Health Policy andPractice across Europe: the future directionof mental health care, Knapp M, et al., eds,2007. Open University Press: Maidenhead. p. 188214.

[13] Sainsbury Centre for Mental Health/ScottishAssociation for Mental Health, Whats it worth? The social and economic costs of mental health problems in Scotland,2006. Scottish Association for MentalHealth: Glasgow.

[14] Marwaha S, and Johnson S, Schizophreniaand employment. Social Psychiatry andPsychiatric Epidemiology, 2004. 39(5): p. 337349.

[15] Stuart H, Mental illness and employmentdiscrimination. Current Opinion inPsychiatry, 2006. 19: p. 522526.

[16] Sartorius N, Iatrogenic stigma of mentalillness. British Medical Journal, 2002.324: p. 14701471.

[17] Harris EC, and Barraclough B, Excessmortality of mental disorder. British Journalof Psychiatry, 1998. 173: p. 1153.

[18] Disability Rights Commission, Equaltreatment: Closing the gap. Results of aformal investigation into health inequalitiesexperienced by people with learningdisabilities and/or mental health problems,2006. Disability Rights Commission: London.

[19] Stuart H, Media portrayal of mental illnessand its treatments: what effect does it haveon people with mental illness?. CNS Drugs,2006. 20(2): p. 99106.

References

Published by Health Scotland

Edinburgh OfficeWoodburn House, Canaan LaneEdinburgh EH10 4SG

Glasgow OfficeElphinstone House, 65 West Regent StreetGlasgow G2 2AF

NHS Health Scotland, 2008ISBN: 1-84485-413-2

Health Scotland is a WHO CollaboratingCentre for Health Promotion and PublicHealth Development

Designed by Redpath www.redpath.co.uk

ContributorsThis briefing paper was commissioned by Health Scotland, a World Health Organization Collaborating Centre that is taking forward work on stigma and discrimination as part of the WHO European Regions Mental Health inEurope Implementation Plan 20052010. It was written by researchers from the Scottish Development Centre forMental Health (SDC) (Dr Felicity Callard, SDC AssociateConsultant; Liz Main, SDC Associate Consultant; FionaMyers, SDC Senior Policy Researcher; Ann-Mari Pynnonen,SDC Research Worker) in collaboration with the Institute of Psychiatry at Kings College London (Professor GrahamThornicroft; Professor Rachel Jenkins), Rethink (Dr VanessaPinfold), and Professor Norman Sartorius.

31References

[20] Anderson R, Wynne R, and McDaid D,Housing and employment, in MentalHealth Policy and Practice across Europe:The future direction of mental health care,Knapp M, et al., eds, 2007. Open UniversityPress: Maidenhead. p. 280-307.

[21] Freyhoff G, et al., eds. Included in Society:Results and Recommendations of theEuropean Research Initiative on Community-Based Residential Alternatives for DisabledPeople, 2004. European Coalition forCommunity Living: Brussels.

[22] Amaddeo F, et al., Reforms in communitycare: the balance between hospital andcommunity-based mental health care, inMental Health Policy and Practice acrossEurope: The future direction of mentalhealth care, Knapp M, et al., eds, 2007.Open University Press: Maidenhead. p. 235249.

[23] Fazel S, and Danesh J, Serious mentaldisorder in 23,000 prisoners. Lancet, 2002.359: p. 545550.

[24] Dressing H, and Salize HJ, Forensicpsychiatric assessment in European Unionmember states. Acta PsychiatricaScandinavica, 2006. 114: p. 282289.

[25] Link BG, Stigma: many mechanisms requiremulti-faceted responses. Epidemiologia ePsichiatria Sociale, 2001. 10: p. 811.

[26] Sayce L, Beyond good intentions: Making anti-discrimination strategies work. Disability & Society, 2003.18(5): p. 625642.

[27] Pinfold V, et al., Active ingredients in anti-stigma programmes in mental health.International Review of Psychiatry, 2005.17(2): p. 123131.

[28] Couture S, and Penn D, Interpersonalcontact and the stigma of mental illness: areview of the literature. Journal of MentalHealth, 2003. 12(3): p. 291305.

[29] Kelly BD, Structural violence andschizophrenia. Social Science & Medicine,2005. 61: p. 721730.

[30] Kelly BD, The power gap: freedom, powerand mental illness. Social Science &Medicine, 2006. 63: p. 21182128.

[31] Link BG, and Phelan JC, Conceptualizingstigma. Annual Review of Sociology, 2001.27: p. 363385.

[32] Hastings G, Social Marketing: Why shouldthe devil have all the best tunes?, 2007.Butterworth-Heinemann: Oxford.

[33] Marshall M, How effective are differenttypes of day care service for people withsevere mental disorders? Health EvidenceNetwork Synthesis Report, 2005. WorldHealth Organization: Copenhagen.

[34] Sartorius N, and Schulze H, Reducing theStigma of Mental Illness: A Report from aGlobal Programme of the World PsychiatricAssociation, 2005. Cambridge UniversityPress: Cambridge.

[35] Sayce L, From psychiatric patient to citizen:overcoming discrimination and socialexclusion, 2000. Palgrave: Basingstoke and New York.

[36] Mental Health Europe, Conclusions andrecommendations for policy and practice.Resulting from the final conference of MHEsTransnational Exchange Project GoodPractices for Combating Social Exclusion of People with Mental Health Problems,2007. Mental Health Europe: Brussels.

[37] Parker C, Developing mental health policy:a human rights perspective, in MentalHealth Policy and Practice across Europe:The future direction of mental health care,Knapp M, et al., eds. 2007. Open UniversityPress: Maidenhead. p. 308335.

Stigma: AnInternational Briefing PaperTackling the discrimination, stigma and social exclusion experienced by people with mental health problems and those close to them

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IntroductionInjustice and inequalityDefinitionsThe cycle of injusticeOperationWhy tackle the problem?Day-to-day lifeHow to tackle the problemMaking it happenSupporting mechanismsMore informationReferences