South Africans are reeling following the shock news by the health ombudsman that 94 psychiatric patients, and counting, have died during the chaotic move from Life Esidimeni hospital by the Gauteng Health department — against repeated advice, legal action and entreaties from experts, activists and the families of the patients.
This is the full report on the matter by the Health Ombud Professor Malegapuru William Makgoba.
NGO Section27 was one of the organisations involved in trying to stop the department through legal action. They have released the following fact sheet to help explain the events leading up to the tragedy.
What happened?
- In October 2015, the MEC for Health in Gauteng, Qedani Mahlangu, announced the termination of the contract between the Department of Health and Life Esidimeni. Around 2000 people, who were receiving highly-specialised chronic psychiatric care, were to be moved out of Life Esidimeni to families, NGOs and psychiatric hospitals providing acute care.
- Why close? The MEC claimed:
- To save money
- To deinstitutionalize (the policy says to do so slowly, over several years, after developing and capacitating community care)
- Why close? The MEC claimed:
- From March to June 2016, mental health care users were discharged from Life Esidimeni in large numbers, with the last discharges happening in June.
- In September 2016, the MEC reported to parliament that 36 former residents of Life Esidimeni had died, including Virginia Machpelah, who died along with a number of others at the same NGO.
What were the legal consequences of the move?
- The way in which mental health care users were discharged from Life Esidimeni was in breach of their rights under the Constitution and the Mental Health Care Act, including the following:
- The right to health care services under section 27 of the Constitution, and the National Health Act and the Mental Health Care Act: not only were they not receiving the care that they required, but the discharge of these patients resulted in a poorer level of heath care than what they received at Life Esidimeni
- The right to dignity under section 10 of the Constitution and the Mental Health Care Act
- The right to life under section 11 of the Constitution
- The protection given to mental health care users against neglect, guaranteed by the Mental Health Care Act
Did anyone try to stop the move?
Families, civil society organisations and professional associations all tried desperately to convince the Department it was placing patients in danger by moving them to places that could not give them the care they required. They were even forced to take the Department to court twice.
- June 2015 – the South African Society of Psychiatrists (SASOP) wrote to the MEC about the risks. SASOP warned the closure was "premature" and "in contradiction" of the policy. It predicted the negative outcomes that have now occurred.
- November 2015 – South African Depression and Anxiety Group (SADAG), SASOP, the SA Federation for Mental Health (SA Fed), and families of Life Esidimeni residents met the Department and asked it to slow down and follow the correct procedure to ensure proper care for the patients.
- December 2015 – Litigation against the Department led to a settlement agreement in which the Department committed to a consultation and a safe process, in the best interests of the mental health care users. It undertook that nobody would be moved until there was agreement on the process and facilities.
- March 2016 – Litigation against the Department to try to stop the transfer of 54 people to Takalani NGO. The Department argued that patients had been assessed and were no longer in need of professional care and Takalani was safe. Although they had previously agreed to consult with stakeholders, they made this decision without consultation, arguing that they had no obligation to consult. The court ruled that the Department could transfer the patients. Patients sent to Takalani, it turned out, were actually diagnosed as having "severe intellectual disability" and being entirely dependent on others for care. The Department had misled the court and allowed the transfer of patients to a facility that was not able to meet their needs.
- Families met with the Department repeatedly to demand safe, dignified care and marched against the Department with their demands three times. They received no substantive response.
How could they have known it would go so wrong?
The national and provincial health departments' own policies predicted this outcome. In addition, experts and families uniformly and repeatedly warned of the consequences. Finally, the Department was told what would happen in the course of two rounds of litigation
- National Mental Health Policy
- Notes "Deinstitutionalisation has progressed at a rapid rate in South Africa, without the necessary development of community-based services. This has led to a high number of homeless mentally ill, people living with mental illness in prisons and revolving door patterns of care." (page 16)
- Warns of the dangers of further premature deinstutionalisation and the current insufficiency of community based care
- Gauteng Mental Health Policy
- Plans for a gradual reduction of beds at Life Esidimeni (10% a year), leaving 1200 by 2019/20 with accompanying development of community based care
- SASOP letter to Department of Health in June 2015
- Warned "unintended, costly, negative consequences" would result
- Noted it would worsen the "revolving door of care" where people move out of facilities, through prisons and homelessness and back into facilities where they have to be restabilized
- Warned that it would cause "greater district health costs as [users] get re-hospitalised"
- Warned community based care facilities were too few and do not have space, equipment, staff or expertise to deal with the patients. Warned also that the psychiatric wards and hospitals were already over-capacity
- 2015 litigation
- Department presented documents that showed that it knew that most people needed higher levels of care than provided in NGOs/at home
- Applicants laid out problems with facilities identified
- Expert psychiatrist gave evidence that Life Esidimeni had accommodated people who had already unsuccessfully been to other facilities. While deinstitutionalization is desirable for patients who can cope with it, Life Esidimeni would always be the most appropriate level of care for some people o
- Family members gave evidence of vulnerability of loved ones and the inability of families to provide the needed care
What should happen now?
- Political, civil and criminal accountability for those responsible
- Inquests into all deaths to establish causes and the appropriate steps that should follow
- Appointment of a curator for each former Life Esidimeni resident to look after their safety and interests
- Remove surviving former residents of Life Esidimeni out of dangerous NGOs and into safe, dignified facilities that cater to their needs
- Appropriate plan in place for mental health care services in Gauteng to avoid a similar incident in the future
Credit: Section27