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Professor Lesley Robertson looks at our medical model of disability and mental health legislation and unpacks the change needed at the societal and health system levels.
As a proud South African, I am always conscious of our resilience, our ingenuity, and how we come together in adversity. But things are falling apart. Plagued by bereavement and job losses, betrayed by politicians and heads of institutions, as well as an ever-present fear of crime, trauma and violence; our centre cannot hold.
Mental health awareness fills our radio talk shows and magazines, but ignorance, discrimination and outright abuse of people with mental illness prevail.
Think of the Tembisa 10 story. Only social development staff protected Gosiame Thamara Sithole’s right to privacy and referred her for mental healthcare. Healthcare providers were seemingly unaware of her need.
Restaurant chain Nando’s continued the abuse, with a mocking advert inferring that she had deliberately scammed others. That she has mental health issues is public knowledge. How lacking are we in insight and judgment?
Gross inhumanity towards people with mental illness occurs in our country at institutional and individual levels. At institutional level, the most obvious is the Life Esidimeni tragedy. At individual level, we remember Jostina Sangweni, who was accused of witchcraft and brutally murdered earlier this year.
Our mental health awareness clearly fails to protect people with psychosocial disabilities (psychosocial disability is used here to include people with mental and/or intellectual disability).
Population wellbeing and psychosocial disability
Last year, South Africa ranked 103 out of 149 countries on the happiness index, a measure of population wellbeing derived from six factors: GDP per capita, social support, healthy life expectancy, personal freedom, the good will of others and trust in government.
While demographic and other inequities are not reflected, it is likely that people with psychosocial disability fare the worst. Mental health conditions negatively impact wellbeing; they increase the risk of unemployment, social exclusion, poor physical health, shortened life expectancy, loss of autonomy and liberty, being a victim of violence and government neglect.
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Globally, the Covid-19 pandemic has taken its toll on mental health and the happiness index of many countries worsened. High-risk groups are those with greater mental health problems, including women, youth and poorer people.
In its concluding observations on South Africa in 2018, the UN Committee on the Rights of Persons with Disabilities (UNCRPD) expressed grave concern regarding the rights of people with psychosocial disabilities.
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Our medical model of disability and mental health legislation were criticised. The needs of women and children were emphasised. We need to change the way we live so that people with psychosocial disability may also experience wellbeing.
Societal change
Every citizen contributes to an environment that enables others to flourish. Mental health literacy is imperative not only awareness of emotional pain, post-traumatic stress, anxiety and depression, but understanding the range of conditions.
We need to comprehend what life is like for people with intellectual disability, autism, attention deficit hyperactivity disorder, and bipolar and psychotic disorders. We need to learn about personality (as in how we perceive ourselves and the world around us) and intergenerational trauma.
Social cohesion strengthens psychological resilience. Conscious, positive social interactions that include those with psychosocial disability are needed. To mitigate stress, safety and security are fundamental. Trustworthy government is pivotal. Abusiveness, crime, illicit substance trade and violence thrive on the back of corruption and mismanagement. While we all suffer, those with psychosocial disabilities are often rendered helpless and homeless.
To prevent disability, early recognition of mental health conditions, support in accessing care and assistance in recovery are essential. Family, neighbours, employers, colleagues, educators, police, lawyers, prison wardens, religious leaders and healthcare providers – everyone in contact with the person – must play their part.
For those with severe psychosocial disability, structured support is often required. Protected employment and supported living are two ways of enabling their participation in society.
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Throughout, kindness, empathy, compassion and altruism pervade. This does not mean that self-pity is indulged or harmful behaviour excused; it means we stand by those who struggle as they experience the consequences of their choices and actions, practice pro-social behaviour and gain self-efficacy.
Health system change
While society supports the person with psychosocial disability in utilising healthcare, quality care must be accessible. Quality care implies that it impacts positively on the person’s life. Accessible implies that the services are known, acceptable, available and affordable to the user, and are appropriate to their need.
About 90% of people who need care do not access it. Of those who do receive care, most are male and many access it through involuntary admissions (a process at odds with the UNCRPD), and almost a quarter are re-hospitalised within three months of discharge, implying therapeutic failure. We have no idea how many are better off for accessing care.
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What must we do?
We need to see major shifts in mindset and structure at micro (individual), meso (system) and macro (national) levels. None of them are novel.
Items to consider
At micro level, a shift from disorder-centred to person-centred mental healthcare with:
- Shared decision-making in the therapeutic process;
- Patient satisfaction; and
- Meaningful outcome measures that reflect improvement in social and occupational functioning, mental health symptoms and distress, physical health and wellbeing.
At meso level, a shift in treatment setting from psychiatric hospital to community with:
- A focus on rehabilitation, recovery and prevention of disability. Infrastructure at community level is needed to facilitate effective therapeutic assessments and processes;
- Every healthcare practitioner, from lay health workers to sub-specialists, to understand their patients’ mental health and be able to intervene appropriately;
- Collaboration between mental health, general health, social care and non-health stakeholders. Infrastructure that facilitates collaborative care is required, including internet and data availability, confidentiality agreements and the physical space for face-to-face group meetings at district or community level;
- Access to general hospital psychiatric care before symptoms or behaviour is unmanageable; and
- For hospitals to see themselves as serving the community.
At macro level, a shift towards prioritisation of mental health with:
- A change in the mindset of health system planners and funders to facilitate employment of specialists at district level to allow for community psychiatry. While primary care practitioners must be trained and capacitated to provide primary mental healthcare to people with any mental health condition, there is no evidence that they can assess and effectively manage severe mental illness. Expecting them to do so will increase healthcare provider stress as responsibility and patient need outweigh expertise;
- Recognition of psychosocial therapeutic interventions as health technologies;
- Health technology assessments of specific occupational therapy, psychotherapy, physiotherapy, counselling and social work interventions to allow incorporation into healthcare packages and insurance funding;
- Feasible, detailed implementation plans with appropriate budgetary allocation to enable equitable, accessible services at each level of care; and
- Good governance with transparent, rigorous monitoring and evaluation of the system, its financing and its effectiveness in achieving wellbeing among people with mental health conditions.
Our mental health policy needs updating. The UNCRPD has recommended that our mental health legislation be repealed as it allows for substitute decision-making (when others decide on behalf of a person deemed to lack mental capacity, such as with involuntary or assisted hospital admissions).
Nevertheless, our national mental health policy has not been implemented and our legislation has not resulted in accessible, person-centred care close to people’s homes. The UNCRPD and the World Health Organisation have outlined a way forward that is adaptable to local conditions. We need to have the right conversations and a willingness to learn and change.
Robertson is an adjunct professor in the department of psychiatry at the University of the Witwatersrand, and leads the Sedibeng district specialist mental health team in Gauteng. She writes in her personal capacity
This article was first published by Spotlight – health journalism in the public interest
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