The Mental Health Gap In South Africa - A Human Rights Issue

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99THE MENTAL HEALTH GAP IN SOUTHAFRICA – A HUMAN RIGHTS ISSUEJonathan Kenneth Burns1IntroductionOn 30 March 2007, South Africa became asignatory to the United Nations Conventionon the Rights of Persons with Disabilities(CRPD) and its Optional Protocol.2 This wasratified several months later on 30 November 2007. The CRPD was negotiated duringeight sessions of an Ad Hoc Committee ofthe General Assembly from 2002 to 2006and adopted on 13 December 2006. To date,there have been 140 signatories to the CRPD(with 59 ratifications) and 83 signatories tothe Optional Protocol (with 37 ratifications).The CRPD is intended as a human rightsinstrument with an explicit social development dimension and constitutes a significant global commitment to a human rightsframework in which issues of achieving substantive equality and the full and unfetteredrights of persons with disabilities are placedat centre-stage.In aligning itself to this international humanrights treaty, the South Africa Governmentcommitted itself to a radical new approach topersons with disabilities of all kinds, basedon the fundamental premise that such persons are “subjects” with rights, who are capable of claiming those rights and makingdecisions for their lives based on their freeand informed consent as well as being active members of society. Importantly, mental health conditions are conceptualised asdisabilities within the CRPD.3 This politicalact by the South Africa Government has profound implications for both the health andsocial development agenda. Furthermore,the establishment of the international Committee on the Rights of Persons with Disabilities, which has oversight and monitoringfunctions, means that citizens of signatorystates, including South Africa, have a meansof reporting local violations and obtainingredress.Despite the significance of this major steptowards achieving human rights for disabledpersons, it seems that there is widespread ignorance, both within and outside the publichealth sector, of the CRPD and its expectations. Similarly, members of the general public, whom the treaty is intended to protect,are likely to have little or no knowledge of itsexistence and its implications for their lives.By all accounts, the South Africa Governmentis not carrying out its obligations and responsibilities as a signatory to the CRPD. As is thecase in many low- and middle-income countries (LAMICs), health and social services forthe mentally disabled remain grossly inadequate, under-developed and under-funded.4The rights of such persons as outlined in theCRPD are routinely violated, and mentallydisabled people generally remain isolated,stigmatised and in many cases disenfranchised 16 years after the end of apartheid.South Africa’s commitment to this international treaty followed an earlier domesticcommitment to human rights for peoplewith mental disabilities in the form of newThe Equal Rights Review, Vol. Six (2011)

100mental health legislation. The Mental HealthCare Act 2002 (MHCA) was implemented in2004 and was generally hailed as one of themost progressive pieces of mental health legislation in the world.5 An entire chapter wasdedicated to human rights for those withmental disabilities. Furthermore, the MHCAcontained articles addressing compulsoryadmission, protection of patients’ property,rights to appeal, the reporting of abuses andthe formation of independent review boardswith ombuds functions. It also highlightedseveral important principles including: theuse of the minimum possible compulsion;the importance of not just treatment but alsorehabilitation and reintegration; the decentralisation of mental health care from largepsychiatric institutions into district andcommunity-based health services; and theintegration of mental health into primaryhealth care.6Unfortunately, the MHCA was an unfundedmandate. Very little preparation occurred –training was not provided, facilities were notdeveloped at district and primary care levels,and no budget was allocated by the government for implementation of such a potentially transformative piece of legislation. Theresult is that now, six years later, a host ofchronic problems are encountered throughout health services nationwide in relationto the care, treatment and rehabilitation ofthose with mental disabilities.7This paper describes the “mental health gap”that exists between current resources formental health care in South Africa and thehuge “burden” of suffering and disability dueto mental illness and disability.8 It identifiesthe multiple inequities that exist between resources and opportunities for the physicallyill and those for the mentally ill.9 Finally, thispaper considers the CRPD, its implicationsfor the conceptualisation and understandThe Equal Rights Review, Vol. Six (2011)ing of mental disability, and the challenge itrepresents for transforming South Africa’shealth and social systems as well as its society from its current situation of gross inequityand discrimination against those with mental disabilities towards a situation where thementally disabled enjoy full parity and human rights.1. The Global “Mental Health Gap”1.1 The Global Mental Health BurdenGlobally, mental and neurological disordersare responsible for approximately 14% ofthe global burden of disease, while over30% of disability-adjusted life-years (DALYs) are attributable to these disorders.10This is expected to increase over the nextdecades. Currently, neuropsychiatric diseasesurpasses both cardiovascular disease andcancer as the leading cause of disability dueto non-communicable disorders. In addition,mental disorders are commonly co-morbidwith physical disorders such as heart disease, cancer and metabolic diseases.11 Thisis particularly relevant to LAMIC contextswithin Sub-Saharan Africa where the HIV/AIDS pandemic has added considerably tothe burden of neuropsychiatric disease anddisability.12 Mental disorders are responsible: for increased mortality due to suicideand reduced life expectancy; for considerable individual and collective suffering; forsignificant loss of social and occupationalfunctioning and productivity; for extensivedisability; and for a major burden on caregivers and families. The impact of mentaldisability is felt most keenly in LAMIC contexts.13 For example, approximately 86% ofthe 800,000 annual suicides globally occur inLAMICs and this may be an underestimate assurveillance and reporting systems are ofteninadequate within these contexts.14 There isevidence that maternal and perinatal mental

101disorders are more common in LAMICs15 andfurther evidence supports an association between perinatal and maternal mental illnessand a number of negative infant outcomes(including low birth weight, under-nutrition,poor growth, diarrheal disease and impairedmotor and cognitive development).16 Mentalillness and disability is both a cause and outcome of traumatic injuries and accidents.17Finally, substance use disorders commonlyco-occur with mental illnesses and are associated with multiple negative health andsocial effects.181.2 Global Mental Health ResourcesDespite these alarming facts, services formental illness and disability are almost universally inadequate. Furthermore, whileadvances have been made in general healthpromotion and prevention, the same cannotbe said for mental disability. Ignorance, prejudice and stigma are widespread. This situation is undoubtedly worse in LAMIC contexts. Analysis of data from the World HealthOrganisation’s Atlas Project on mental healthshows “widespread, systematic and longterm neglect of resources for mental healthcare in low-income and middle-incomecountries”.19 Essential community-basedmental health care services exist in onlyhalf of LAMICs, while only 60% of countriesworldwide have facilities to train primaryhealth workers in mental health care. WithinAfrica and Asia there is a gross inadequacyof beds for those requiring hospitalisationfor mental illness. The median number ofbeds in African countries is 0.34 per 10,000population and 73% of these are in psychiatric hospitals. In Asia the situation is worsewith only 0.33 beds per 10,000 populationand 83% of these located in psychiatric hospitals.20 By contrast, Europe has a median of8 beds per 10,000 population and, with theexception of some LAMIC countries in Cen-tral and Eastern Europe, most of these bedsare in community-based hospitals.21 Manypsychiatric hospitals remain unsuitable forrehabilitation and reintegration of individuals admitted with severe mental disorders.Similarly, there is major inequity betweenhigh-income countries (HICs) and LAMICSin terms of trained mental health professionals. The average number of psychiatrists inHICs, for example, is 10.5 per 100,000 population, as opposed to low-income countries(LICs), where the average number is 0.05 per100,000 population.22 Globally, mental healthreceives a disproportionately small proportion of health budgets and mental healthservices are therefore funded from generalhealth budgets where they receive low priority. This is especially the case in countriesdealing with other major health problemssuch as HIV/AIDS, tuberculosis and malnutrition. In terms of mental health legislationand policy, LAMIC regions fare especiallypoorly. Globally, approximately a third ofcountries have no such regulations, while inAfrica only half do. Of those countries that dohave mental health legislation, a large proportion have not revised their legislation fordecades, leaving persons with mental illnesswithout legal protection.232. The “Mental Health Gap” in SouthAfrica2.1 The Mental Health Burden in SouthAfricaSouth Africa is a middle-income countrywith a population of 47 million characterisedby multiple societal-level socioeconomic riskfactors for mental illness and disability (seeTable 1). It ranks 13th highest in the world interms of the proportion of the population living under the poverty line (50%); is secondhighest in terms of income inequality (GINIcoefficient is 65); has the 19th highest unemThe Equal Rights Review, Vol. Six (2011)

102ployment rate (24%); and has a high rate ofurbanisation, lying 41st with a rate of 1.4%.24In addition, South Africa has extraordinarily high rates of crime and violence, one ofthe highest road accident death rates in theworld, and lies 99th out of 121 countries in a2007 Economist rating using a “Global PeaceIndex”.25 It has the 4th highest rate of drug offences and, according to the United NationsOffice on Drugs and Crime (UNODC), SouthAfrica now ranks within the top 30% of countries in terms of rates of opiate addiction.26South Africa is also located at the epicentreof the HIV/AIDS pandemic in Sub-SaharanAfrica with the 4th highest prevalence rate(18%) and the greatest number of people liv-ing with HIV/AIDS worldwide.27 HIV/AIDS isassociated with a significantly increased burden of neuropsychiatric disease and disability including depression, anxiety, psychosisand dementia.28 Furthermore, the mortalitydue to AIDS impacts on children, hundredsof thousands of whom have been orphaned.Child-headed households are now a commonphenomenon in South Africa. There is nowsubstantial evidence that poverty, inequality, urbanisation, unemployment, traumaand violence and substance abuse are majorenvironmental risk factors for mental illnessand therefore increase the burden of mentalillness and disability within a society.29Ranked in theworld (total no ofcountries)IndicatorProportion of the population living under the poverty line50%13th highest (100)Index of income inequality (GINI coefficient)652nd highest (134)Urbanisation rate1.4%41st highest (63)Rapes (per 100,000 population)1.21st highest (65)Unemployment rateMurder rate (per 100,000 population)24%47.519th highest (131)3rd highest (121)Assaults (per 100,000 population)12.11st highest (57)Total crimes (per 100,000 population)77.210th highest (60)Incarceration rate (per 100,000 population)33518th highest (155)Burglaries (per 100,000 population)Drug related offences (per 100,000 population)8.953.810th highest (54)4th highest (60)Road traffic deaths (per 100,000 population)33.224th highest (178)Global Peace Index2.422nd lowest (121)Opiate drug abuse (per 100,000 population)HIV prevalenceThe Equal Rights Review, Vol. Six (2011)0.3818%47th highest (133)4th highest in world

103Ranked in theworld (total no ofcountries)Indicator5.7millionNumber of people living with HIV/AIDS1st highest in worldHIV/AIDS deaths per year350,0001st highest in worldLife expectancy at birth (years)48.916th lowest (221)Tuberculosis incidence (per 100,000 population)6009th highest (200)Death rate (per 1,000 population)1712th highest (220)Suicide rate – total (per 100,000 population)15.422nd highest (106)Infant mortality rate (per 1,000 live births)44.4Suicide rate – male (per 100,000 population)25.3Suicide rate – female (per 100,000 population)5.6Psychiatrists (per 100,000 population)0.28Physicians (per 1,000 population)0.77Psychologists (per 100,000 population)Social workers in mental health (per 100,000 population)Occupational therapists in mental health (per 100,000population)Nurses in mental health (per 100,000 population)Psychiatric beds in mental health facilities (per 100,000population)59th highest (221)17th highest (103)26th highest (103)119th highest (201)0.320.40.131024Table 1: Socioeconomic and health indicators for South AfricaUntil quite recently, there was little in theway of epidemiological data on mental illness in South Africa. However, the SouthStress and Health Study (SASH), which waspart of the WHO World Mental Health (WMH)Survey Initiative conducted between 2002and 2004, reported results of a populationbased survey of 4351 adults.30 The 12-monthprevalence of any DSM-IV/CIDI disorder31was 16.5%, with the most common disorders being agoraphobia (4.8 %), major depressive disorder (4.9%) and alcohol abuseor dependence (4.5 %). The authors of theSASH study note that prevalence rates ofcommon mental disorders are significantlyhigher in South Africa than in another WMHAfrican country, Nigeria, and are in fact moresimilar to the rates reported from ColombiaThe Equal Rights Review, Vol. Six (2011)

104and Lebanon. Interestingly, both of thesecountries have a number of socioeconomicfeatures in common with South Africa andlikewise have experienced chronic conflict.32The SASH study authors also observe that theestimated prevalence of substance abuse inSouth Africa (5.8%) was at least about twiceas high as that in other WMH countries, withthe exception of Ukraine. With a nationalsuicide rate of 15.4 per 100,000 population,South Africa is ranked 22nd in the world.332.2 Mental Health Resources in South AfricaDespite South Africa’s progressive mentalhealth legislation (i.e. MCHA), multiple barriers to the financing and development ofmental health services exist, which result in:(i) psychiatric hospitals remaining outdated,falling into disrepair, and often unfit for human use; (ii) serious shortages of mentalhealth professionals; (iii) an inability to develop vitally important tertiary level psychiatric services (such as child and adolescentservices, psychogeriatric services, neuropsychiatric services, etc.); and (iv) communitymental health and psychosocial rehabilitation services remaining undeveloped, so thatpatients end up institutionalised, withouthope of rehabilitation back into their communities. This state of affairs remains unchanged despite the legislated commitmentsto reform mental health care in the MHCA.While legislation exists and a mental healthpolicy was approved in 1997, to date thispolicy has not been widely published or implemented together with guidelines.34 This isdue to both administrative and capacity issues and to the low priority given to mentalhealth by provincial health departments.35 Inaddition, there is no national mental healthplan and, at a provincial level, only one ofnine provinces has a specific mental healthThe Equal Rights Review, Vol. Six (2011)plan.36 There is no specific budget for mentalhealth either at national or provincial leveland therefore mental health services arefunded out of general health budgets wherethey inevitably end up at the bottom of a pileof pressing needs when money is allocated.In a recent survey of all nine provinces, Lundand colleagues found that only 3 provincescould report data on mental health expenditure – these reported 1%, 5% and 8% respectively.37 While this range is about average formost middle-income countries, it reflects thedisproportionately low allocation made tomental health (given the high prevalence ofmental disorders and the fact that over 30%of disability-adjusted life-years (DALYs) areattributable to these disorders).38Research conducted in KwaZulu-Natal Province reveals gross inequity in the allocationof provincial health budgets to psychiatricfacilities.39 Budget increases to six psychiatric hospitals over the 5-year period (20062010) ranged from 8% to 25% with a mean5-year increase of 19% and a mean annualincrease of 3.8%. This contrasted with budget increases to seven general hospitals overthe same 5-year period, which ranged from29% to 64% with a mean 5-year increase of51% and a mean annual increase of 10.2%.The median cumulative budget increase forpsychiatric hospitals was significantly lowerthan that of general hospitals, clearly illustrating a pattern of inequitable treatment ofpsychiatric hospitals in relation to generalhospitals. Furthermore, this analysis showedthat four of the six psychiatric hospitals surveyed experienced an actual year-to-yeardrop in budget allocations at some pointduring the 5-year period. None of the generalhospitals experienced a drop in budget during the period. This highlights the impressionthat the government does not value psychiatric services and is prepared to sacrifice the

105expansion of psychiatric services in order tomaintain general hospital services.The MHCA made law the introduction of Mental Health Review Boards (MHRBs) in everyregion of the country. The establishment ofsuch boards is the responsibility of provincialdepartments of health. These boards have“ombuds” functions, representing the interests of patients, reviewing compulsory treatment, hearing appeals and investigating allegations of abuse. While MHRBs have been setup in most regions, their efficiency and effectiveness varies considerably. A recent reviewconducted in KwaZulu-Natal Province, forexample, reported that the MHRB had visitedonly 7 of the 36 hospitals in the region in thepreceding 6 months, while 10 hospitals hadeither never been visited or had not beenvisited for more than 2 years.40 The authorsobserve that operational inefficiencies limitsubstantially “the capacity of the ReviewBoard or judiciary to intervene timeously inthe event of a violation of the Act”.In terms of hospital resources for psychiatry,South Africa is not too badly off comparedwith other African countries with 2.1 bedsper 10,000 population, but fares badly incomparison with the European median of8 beds per 10,000 population. Of these 2.1beds, 1.8 are in psychiatric hospitals and0.3 in general hospitals.41 This figure represents just over 60% of the beds required tocomply with norms established by the SouthAfrican National Department of Health.42Availability of beds for psychiatric care varies substantially from province to province –for example, KwaZulu-Natal has only 25% ofthe number of acute beds required to complywith norms.43Community-based services are worse off:there are only 80 day treatment facilitiesavailable in the country (for a population of47 million) and half of these are providedand run by a non-governmental organisation (the South African Federation of MentalHealth (SAFMH)). In addition, there are 0.36beds per 10,000 population located within63 community residential facilities nationwide and, again, half of these are provided bythe SAFMH.Resources specifically structured for thetreatment of children and adolescents aregrossly inadequate. Only 1.4% of outpatientfacilities, 3.8% of acute beds in general hospitals and 1% of beds in psychiatric hospitalsare for children and adolescents.44 Information is not available for the total number ofchild and adolescent psychiatrists in SouthAfrica (and the number varies considerablyfrom region to region) but in general thereare very few. For example, in KwaZulu-Natal Province (which has a population of 10million) there are only two such specialistswithin the public health system.Human resources for mental health care inSouth Africa are desperately inadequate. Arecent national survey revealed that, per100,000 population, the country has only0.28 psychiatrists, 0.32 psychologists, 0.4social workers, 0.13 occupational therapistsand 10 nurses.45 Thus, as far as psychiatristsare concerned, South Africa has less than30% of the number required to comply withnational norms of 1 per 100,000 population.Furthermore, this figure (0.28 per 100,000population) falls far below the average forother middle-income countries (which isapproximately 5 per 100,000 population)and even further below the average for highincome countries (which is approximately15 per 100,000 population).46 Furthermore,most mental health professionals tend to belocated within urban centres, leaving largeThe Equal Rights Review, Vol. Six (2011)

106rural regions of the country without suchservices. For example, of the 32 psychiatristsworking in the public health sector in KwaZulu-Natal Province, only 6 are located outside of the major cities.Thus it is clear that resources for mentalhealth care are seriously inadequate in SouthAfrica and, given the large burden of diseasewhich is undoubtedly increased by socioeconomic conditions of poverty, inequality,violence and infectious diseases, there is aconsiderable gap between needs and services. This is borne out by recent research.In the SASH study, only 28% of adults witha severe or moderately severe disorder andonly 24.4% of those with mild cases receivedtreatment.47 Other research in KwaZuluNatal shows that a large proportion of thepopulation relies on informal services in thecommunity for mental health treatment.48 Ina sample of patients with first-episode psychosis (FEP), Burns and colleagues reportedthat 38.5% had consulted a traditional healer for the incipient psychotic illness prior tomaking contact with formal psychiatric services.49 This compares with rates reportedin FEP patients in other LAMIC contexts – athird in Zambia, 24% in Singapore and 23%in Iran.50 Consultation with traditional healers may delay access to care for people withearly mental illness and this in turn may impact negatively on the course and outcomeof the illness.51 Traditional healers are moregeographically accessible and more culturally accessible to many citizens, particularly inthe largely rural province of KwaZulu-Natal.There is good evidence that a significant proportion of individuals experiencing mentalhealth problems in this region consult traditional healers as their first port of call despite the fact that the services of traditionalhealers are often more expensive than publichealth services.52 In addition to geographicalThe Equal Rights Review, Vol. Six (2011)and financial barriers, another major factorleading individuals to traditional healers issocietal stigma associated with the use offormal mental health services.53 Thus SouthAfrica, like most other LAMICs, is characterised not just by inadequacies in the availability of resources for mental health care butalso by numerous barriers to access to mental health services.543. The Mental Health Gap Is a HumanRights IssueThe gap that exists between the burden ofmental illness and disability and the relativelack of mental health resources in South Africa is a human rights issue. The state has anobligation to provide services for the healthneeds of its people; and it is clear that services for those with mental illness and disabilityare woefully inadequate and, for many people, inaccessible in that nation. South Africais by no means the only country characterised by a mental health gap – indeed mostcountries fall short of meeting the mentalhealth needs of their citizens.55 However,South Africa is a nation that has publicallydeclared its commitment to upholding therights of the mentally ill and disabled – bothin enacting one of the most progressive pieces of mental health legislation in the world56and through signing and ratifying the CRPD.In making these commitments, the government of South Africa has affirmed its beliefthat all members of the society have a fundamental constitutional right to care. Emergingfrom decades (if not centuries) of racism anddiscrimination based on ethnicity, the newregime has been both passionate and vocalin addressing the rights of minority and previously discriminated groups in society. TheSouth African Constitution guarantees theserights and it is clear that discrimination onthe basis of race, gender, sexual orientation

107or physical disability is punished severelywithin the new dispensation.57This is not the case however regarding thosewith mental illness or disability. As is still thecase in many countries around the world,people with mental disabilities face multipleforms of inequity and discrimination in theirdaily lives.58 Both outside and within thehealth system, patients encounter discrimination and prejudice – in the form of reducedwork opportunities and social opportunities,disenfranchisement and restriction of civilliberties, inferior treatment of co-morbidphysical illnesses, and in the form of socialstigma. This is reflected, as we have seen, inthe state’s failure to close the mental healthgap through the provision of resources. Thismeans that people with mental disabilitiesexperience a fundamental violation of theirbasic right to care by the state. This calls for ahuman rights approach to the mental healthgap in South Africa as well as in other nations.4. A Human Rights Approach to Inequityin Mental Health CareThe CRPD sets out a framework for a rightsbased approach to disability and in doing so“calls for changes that go beyond quality ofcare to include both legal and services reforms” and “demands that we develop policies and take actions to end discrimination inthe overall society that has a direct effect onthe health and well-being of the [mentally]disabled”.59 The CRPD sets out a number ofguiding principles:a) Respect for inherent dignity, individual autonomy including the freedom to make one’sown choices, and independence of persons;b) Non-discrimination;c) Full and effective participation and inclusion in society;d) Respect for difference and acceptance ofpersons with disabilities as part of humandiversity and humanity;e) Equality of opportunity;f) Accessibility;g) Equality between men and women; andh) Respect for the evolving capacities of children with disabilities and respect for theright of children with disabilities to preservetheir identities.60In addition to these principles, the CRPDhighlights the importance of a number of related rights. These include:1) Equal recognition before the law, access tojustice, and legislative reform to abolish discrimination in society;2) Awareness-raising to educate society, combat prejudices and promote awareness of thecapabilities of persons with disabilities;3) The right to life, liberty and security ofperson including freedom from degradingtreatment, abuse, exploitation and violence;4) The right to movement, mobility, independent living and full inclusion within thecommunity including full access to and participation in cultural life, recreation, leisureand sport;5) Freedom of expression and opinion, access to information and full participation inpolitical and public life;The Equal Rights Review, Vol. Six (2011)

1086) Respect for privacy, for the home and thefamily, including the freedom to make decisions related to marriage and parenthood;7) The right to equal education, work andemployment including the full accommodation of individual requirements;8) The right to health, habilitation and rehabilitation; and9) The right to an adequate standard of living, suitable accommodation and social protection.61With respect to mental illness, how does thisframework inform our response to the inequities and discrimination present in societyand mental health care? Specifically, if wetake these principles and rights and applythem to the South African context, what actions are required to transform that societyso that persons with mental disabilities experience full equality, an end to discrimination,and full recognition of their personhood? Anaction plan at national as well as local levelswould include:1. The development of a strong advocacymovement, led by persons with mental disabilities. Repeatedly it has been shown that“user-led” advocacy around issues of legalreform, services development, and societaltransformation has been most effective inending discrimination and stigmatisationand achieving human rights for specific minority communities.622. Legislative reform to abolish discrimination,outlaw abuse and exploitation, and protectpersonal freedom, dignity, and autonomy. Civil commitment laws that deprive individualsof their freedom “must provide for minimumsubstantive and procedural protections thatThe Equal Rights Review, Vol. Six (2011)protect mentally ill individuals’ fundamentalagency”.63 In addition, such laws should guarantee the rights to counsel, appeal, and review in relation to involuntary commitmentas well as redress for violations. As mentallydisabled persons may not be in a position tosafeguard their personal rights while unwell,there should be a mechanism for active monitoring and enforcement of such rights. TheMHRBs legislated in the MHCA are a goodstart and are intended to fulfil an ombudsfunction.64 However, as discussed earlier, thefunctioning and actual power of these boardshas so far been inadequate. If this is to bemore than just a gesture then t

have mental health legislation, a large pro-portion have not revised their legislation for decades, leaving persons with mental illness without legal protection. 23. 2. The "Mental Health Gap" in South . Africa 2.1 The Mental Health Burden in South . Africa. South Africa is a middle-income country . with a population of 47 million characterised

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