Foetal Alcohol Syndrome: FASFacts briefing; Deaths of mentally ill patients: Gauteng Health MEC progress report

NCOP Health and Social Services

14 March 2017
Chairperson: Ms L Zwane (ANC) (Acting)
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Meeting Summary

FASFacts, an non-profit orgnanisation dealing with Fetal Alcohol Syndrome based in the Western Cape, explained its goals and strategies. In South Africa at least three million people have fetal alcohol syndrome (FAS), and approximately six million have partial FAS and other FAS disorders. Members asked questions about funding, collaboration with other role players and impact assessment studies.

Dr Gwen Ramokgopa, former Deputy Minister of Health (2010-2014) and now Health MEC for Gauteng, a position she previously held from 1999 to 2006, presented a progress report on the Department’s implementation of the eighteen recommendations made by the Health Ombud in his report of 1 February 2017, concerning the recent transfer of mentally ill patients from Life Esidimeni to non-governmental organizations (NGOs). She reported on the suspension of senior management officials; disciplinary action taken against DoH staff involved; revised reviews of existing licensed NGOs; review of health care standards; review of the National Health Act and the Mental Health Care Act; a strategy and policies for future deinstitutionalisation; the implementation of an alternative dispute resolution process for affected families, and a revision of the Gauteng Mental Health Review Board.

Members raised questions about communication with patients’ families; licensing regulations for NGOs; specific causes of death of the patients who had been moved, and how staff previously employed at Life Esidimeni had been affected.

Meeting report

Foetal Alcohol Syndrome: FASFacts briefing
Mr Francois Grobbelaar, CEO and founder of FASFacts, together with five members of his team, briefed the Committee on its mission, objectives and achievements, and the means under which the organisation operates. The South African context is that at least three million people have fetal alcohol syndrome (FAS), and approximately six million have partial FAS and other FAS disorders.

FASFacts aims to:
• enable mentors to motivate and support pregnant women who consume alcohol to abstain during pregnancy and breastfeeding;
• educate pregnant women about the lifelong devastating effects of alcohol on unborn children;
• educate people about alcohol and drug abuse, and support participants in making healthy life choices;
• deliver an early intervention service to assist pregnant women with psycho-social challenges.

FASFacts makes use of experiential learning in local communities, schools, shebeen owners, and public service announcements on community radio and television stations. They run a mentoring programme for pregnant women as well as a Train the Trainer programme, whereby other role players in community development help to spread awareness. The NGO currently operates in the Western Cape and the Northern Cape, and aims to attract sufficient funding to implement all the intervention and educational campaigns at the national level due to ever-growing need for awareness.

The Acting Chairperson thanked Mr Grobbelaar and the FASFacts staff for their presentation. She said that, although she recognises that they are not a government agency, a more detailed background narrative would have been useful.

Mr C Hattingh (DA) commented on the massive task that FASFacts has undertaken. He asked what the mechanics of the operation are, where its funding comes from, and whether national or provincial programmes have had any effect on addressing FAS. What is the statistical evidence that FASFacts is making inroads into the communities?

Ms T Mpambo-Sibhukwana (DA) noted that FAS is rife in the Western Cape, and asked what progress had been made in getting to black schools to create awareness of the problem. What efforts had been made in conjunction with the Departments of Social Development (DSD) and Health to focus on preventative measures? What is the message to the youth, in terms of abstaining from sex and from alcohol consumption? As FASFacts has received funding from DSD in the past, what is the nature of the collaboration between them? Has FASFacts been invited to a range of communities where they can give user-friendly presentations (for example, blowing into balloons).

Ms P Samka-Mququ (ANC) asked whether FASFacts had presented to the Department of Social Development, as it has a sub-committee on drug abuse. She said that the Committee would be able to assist through the DSD because it has oversight into the ways they fund their projects.

The Acting Chairperson said that the subject of FAS is highly sensitive and scientific, and needs to be backed up by medical research. For the Department of Social Development to consider supporting the FASFacts programme, it would need more medical evidence to prove the adverse effects of alcohol. Impact assessment studies would need to be undertaken to show what the community reach is, and which communities are more affected than others. It needs to show that South Africa’s 25 000 schools can be reached, in order to spread awareness, and that the policies and rules employed support this.

She said that the Committee is very happy to see FASFacts running, and asked what kind of memorandum of understanding it would seek to have with the DSD and other relevant bodies. The nation is being destroyed by this kind of problem, and much more work needs to be done in this area.

Mr Grobbelaar told the Committee that FASFacts started in 2002, after he had studied at the University of Stellenbosch as a minister and also worked as a chaplain in the SA Navy. God called him and his wife to serve communities at the ground level, so he started approaching people for funding to start this kind of programme on a small scale. FASFacts received funding from the Netherlands government for three years, until they got on their feet. The DSD was also one of the first funders, and they still provide some funding. For the last two years, the Department of Agriculture has provided funding, as well as Distel, a large liquor producing company; the Nelson Mandela Childrens’ Fund; the Cape Winelands District municipality, and the Lotto. The current annual turnover is approximately R2 million.
FASFacts tries to take hands with other role players doing similar work, for instance the Foundation for Alcohol Related Research (FARR), because they also run intervention and prevention programmes. Research is a very costly business, and it would require a different kind of foundation and long-term funding. The University of Stellenbosch also does research into this area.

It is very difficult to provide statistical evidence of the positive impact of the FASFacts programme on communities, because no research into prevalence rates before and after has been or can be undertaken. So the operation is based on the knowledge that problems in communities exist, and impact assessment studies have shown that the prevention programmes we implement definitely increase knowledge and awareness. About 82% of people have said they got knowledge from FASFacts but also from health clinics and FARR. About 70% of people have said they have also become more health-conscious in general, which is good for pregnancy, and a positive behavioural change.

FASFacts definitely wants to reach into black townships, and funders have been approached although we have not been successful yet. In De Doorns, for instance, programmes have been run for many years in certain schools, but we present to all schools. We take hands with the DSD as far as possible, and they work with us on International FAS Day, on 9 September every year.

The youth are addressed in the Cape Winelands, where community development workers are trained to raise awareness of FAS, and the benefits of abstaining from sex and drugs. They go to different areas as well as the health clinics in black areas. Sometimes it is difficult to get into the schools and the classrooms, so we run presentations during break times. 24 community development workers have been trained; they are spread throughout the Cape Winelands district. The Parenting Skills programme is presented to pregnant school girls and they receive guidance on pregnancy, future goals, etc.

The programme is primarily focused on the prevention of FAS, but also on alcohol and drug abuse in general. Children are told about the benefits of abstinence from Grade 6 onwards, until they are old enough to make responsible decisions. Life skills are embedded in the programmes.

Local government has a huge number of community workers on the ground level, across the country, so existing development workers can be utilised. Rhodes University is doing a baseline study on drinking patterns in the Eastern Cape, and when the results are known programmes can be implemented, then the university can do another impact assessment.

The DSD representative said she recognised that FASFacts is doing a good job but that they cannot be everywhere, and an expansion of training and resources is necessary to provide this kind of programme and also to integrate into existing programmes. Adolescent reproductive health as well as a focus on the role of parents and the kind of information they need, is necessary. FASFacts is worth supporting but it should consider concentrating on smaller areas to make more impact.

The DoH representative said that she had not been aware of the good work that FASFacts is doing, and it could link well with their Maternal Health Unit.
The Acting Chairperson said that the Committee appreciated the work that FASFacts does, and that other national departments must also support its work because it cannot stand alone. Impact assessment studies are crucial because they provide information about the return on the state’s investment in such programmes.

Gauteng MEC progress report
The former Deputy Minister of Health and now Gauteng MEC, Dr Gwen Ramokgopa, presented a progress report on the implementation of the Health Ombud’s recommendations in his report of 1 February 2017 on Mental Health Care Users. The Committee had not been provided with a copy of the Ombud’s report, and she apologised for this.

The Acting Chairperson said that the Committee’s purpose was to discuss the tragedy of the deaths of the mentally ill patients, what the circumstances were, and what the Department is doing to mitigate the problems. Why did so many people die at the same time? What are the new agreements between the Department and the existing and/or new care facilities?

Dr Ramokgopa said that initially 36 patients had died, but after the conclusion of the Health Ombud’s report, the figure had gone up to over 94. The deaths took place between 23 March 2016 and 19 December 2016.

The Acting Chairperson asked why no-one else from the Department was present at the meeting.

Dr Ramokgopa said she had tried to encourage some staff to attend with her, but that it had been agreed that the Acting Head of Department would remain in office because the programme was at a sensitive stage. The presentation had been compiled with the help of the Act HoD and the rest of the team. She added that it was distressing to have to say that it was proving difficult to cope with all the challenges currently being faced.

Mr Hattingh said that he had heard that some of the Gauteng Health Department officials were challenging the Health Ombud’s findings, and were threatening to take it on review. He asked if the absence of anyone else from the DoH was related to this challenging of the report.

Dr Ramokgopa replied that the absences were not directly related. The HoD and other officials are currently on suspension, and she is trying to pull the department together under difficult circumstances.

The Health Ombud report was released on 1 February 2017, and 27 of the NGOs involved had been investigated. The report found that there was available evidence to show that the Department’s decision to terminate the contract with Life Esidimeni and send the patients out to other facilities had precipitated the conditions that led to their deaths. The Health Ombud said that the project known as the Gauteng Mental Health Marathon Project (GMHMP) and concluded that it was undertaken in a rush, with no proper planning or infrastructure and without established community-based services. The recommendations made in the report have been accepted by the Premier of Gauteng and the Ministry of Health, and the focus now is on the methods of implementation. Dr Ramokgopa said it was very difficult to accept that the mentally ill patients were not able to access the protection afforded by national policies, and that other health workers had not been involved in the GMHMP, so that the circumstances would have been different.

Dr Ramokgopa said that the Department acknowledges that there has been huge damage to its reputation. Over 600 00 other provincial health workers have said that they could have helped, but the rushed nature of the project made it slip through the capacity of others in the Department. She does not believe that the people who are involved intended the outcome. Meetings have been held with senior management and district managers, and there has been a general acknowledgement that more must be done to restore lost confidence.

Eighteen specific recommendations had been made in the Health Ombud report and the Health MEC gave a status update of each one:

1. Recommendation: The GMHMP must be de-established.
Status: The GMHMP has been stopped.

2. Recommendation: The Premier of the Gauteng province must, in the light of the findings herein, consider the suitability of Ms Qedani Dorothy Mahlangu: MEC for Health, to continue in her current role as MEC for Health.
Status: The MEC has voluntarily resigned.

3. Recommendation: Disciplinary proceedings must be instituted against Dr Tiego Ephraim Selebano: Head of Department: Gauteng Department of Health for gross misconduct and/or incompetence in compliance with the Disciplinary Code and Procedure applicable to SMS members in the Public Service. In the light of Dr Selebano’s conduct during the course of the investigation, it is recommended that the Premier should consider suspending him pending his disciplinary hearing, subject to compliance with the Disciplinary Code and Procedure available to SMS members in the Public Service.
Status: Disciplinary process has commenced against the HoD; the HoD is now on suspension; the Acting HoD commenced duties on 8 February 2017.

4. Recommendation: Disciplinary proceedings must be instituted against Dr Makgabo Manamela for gross misconduct and/or incompetence in compliance with Disciplinary Code and Procedure applicable to SMS members in the public service. In the light of Dr Manamela’s conduct during the course of the investigation, which includes tampering with evidence, it is recommended that consideration be given to suspending her pending her disciplinary hearing, subject to compliance with the Disciplinary Code and Procedure application to SMS members in the public service.
Status: Dr Manamela has been suspended.

5. Recommendation: The findings against Drs M Manamela and T Selebano must be reported to their respective professional bodies for appropriate remedial action with regard to professional and ethical conduct.
Status: Once the disciplinary bases are finalised, reports will be submitted to the relevant professional bodies.

6. Recommendation: Corrective disciplinary action must be taken against members of the GDoMH: Ms S Mashile (Deputy Director), Mr F Thobane (Deputy Director), Ms H Jacobus (Deputy Director), Ms S Senelo (Deputy Director), Dr S Lenkwane (Deputy Director), Mr M Pitsi (Chief Director), Ms D Masondo (Chair MHRB) Ms M Nyatlo (CEO of CCRC), Ms M Malaza (Acting CEO of CRCC) in compliance with the Disciplinary Code and Procedures applicable to them, for failing to exercise their fiduciary duties and responsibilities. They allowed fear to cloud and override their fiduciary responsibilities and thus failed to report this matter earlier to relevant authorities. Fiduciary responsibility is essential for good corporate governance.
Status: All the seven staff members are being subjected to disciplinary processes; Ms D Masondo, Chair of GMHRB, is being dealt with in accordance with the Mental Health Care Act.

7. Recommendation: All the remedial actions recommended above must be instituted within 45 days and progress be reported to the CEO of the Office of Health Standards Compliance within 90 days.
Status: The Steering Committee was appointed by the Premier and the Minister and is co-chaired by the DG of Gauteng, the DG of the National Department of Health and the Acting HoD of Health, Dr Kenoshi; the Steering Committee is also liaising with other government departments: SAPS, National Treasury, Social Development and SASSA, and the Department of Justice.

8. Recommendation: The Ombud fully supports the ongoing SAPS and Forensic investigations underway. The findings and outcomes of these investigations must be shared with appropriate agencies so that appropriate action where deemed justified can be taken.
Status: The Director General in the Office of the Presidency has met with the SAPS Provincial Commissioner, General de Lange, and the SAPS team is now involved as per the Health Ombuds report.

9. Recommendation: The National Minister of Health should request the SAHRC to undertake a systematic and systemic review of human rights compliance and possible violations nationally related to mental health.
Status: This has been done.

10. Recommendation: Appropriate legal proceedings should be instituted or administrative action taken against the NGOs that were found to have been operating unlawfully and where MHCUs died.
Status: The report of the assessment teams has been finalised and their reports and appropriate legal proceedings/administrative action will be instituted.

11. Recommendation: In the light of the findings of the report, the NDoH must review all 27 NGOs involved in the Gauteng Marathon project; those that do not meet health care standards should be de-registered, closed down and their licenses revoked in compliance with the law.
Status: All the 27 NGOs have been visited and assessed by the assessment teams; five of them were closed before the Health Ombud’s report was released; the process of relocating patients from the remaining 22 has started with the guidance of the team of experts and in the best interests of the patients; currently three NGOs were closed in the past few days.

12. Recommendation: The National Minister of Health must with immediate effect appoint a task team to review the licensing regulations and procedures to ensure they comply with the National Health Act, the Mental Health Care Act of 2002 and Norms and Standards. The newly established process must ensure that NGO certification is done through the OHSC. This newly established licensing process should form the first line of protection for the mentally ill. Currently, this does not seem to be the case.
Status: The Minister has written to the South African Law Reform Commission in this regard.

13. Recommendation: All patients from Life Esidimeni currently placed in unlawful NGOs must be urgently removed and placed in appropriate Health Establishments within the province where competencies to take care of their specialised needs are constantly available; this must be done within 45 days to reduce risk and save life; simultaneously, a full assessment and costing must be undertaken.
Status: Under the guidance of the team of experts, the process of relocating patients has started. To date 98 patients have been transferred; patients are being moved in consultation with their families.

14. Recommendation: There is an urgent need to review the National Health Act (2003) and the Mental Health Care Act (2002) to harmonise and bring alignment to different spheres of government. Centralisation of certain functions and powers of the MHCA must revert back to the National Health Minister, while Schedule 4, Part A of the Constitution and Sections 3 subsection 2, section 21, subsection 25, subsection 1 and 2, sections 48 and 49 and section 90 of the National Health Act No 61, 2003, recognise and define Health as a concurrent competence between the National and Provincial government spheres the findings and lessons of this investigation merits such a review. Furthermore, projects of high impact on the quality and reputation of the national health system and whose outcomes undermine human dignity, human well-being and human life must not be permitted not be undertaken without the express permission of the National Health Minister or his/her nominee.
Status: The preparation process has started.

15. Recommendation: Projects such as the GMHMP must not in future be undertaken without a clear policy framework, without guidelines and without oversight mechanisms and permission from the National Health Minister; where such policy framework exists the National Health Minister must ensure proper oversight and compliance.
Status: This will be complied with.

16. Recommendation: This investigation has clearly shown that for deinstitutionalisation to be undertaken properly, the primary and specialist multidisciplinary teams that are community-based mental health care services must be focused upon, must be resourced and must be developed before the process is started. It will most probably require more financial and human resource investment initially for deinstitutionalisation to take root. Sufficient budget should be allocated for the implementation.
Status: This is part of the plan that will be implemented.

17. Recommendation: The National Minister of Health must lead and facilitate a process jointly with the Premier of the Province to contact all affected individuals and families and enter into an Alternative Dispute Resolution process. This recommendation is based on the “low trust, anger, frustration, loss of confidence” in the current leadership of the Gauteng DoH by many stakeholders. The NDoH must respond humanely and in the best interest of affected individuals, families, relatives and the nation. The process must incorporate and respect the diverse cultures and traditions of those concerned. The response must include an unconditional apology to families and relatives of deceased and live patients who were subjected to this avoidable trauma, and as a result of the emotional and psychological trauma the relatives have endured, psychological counselling and support must be provided immediately. The outcome of such process should determine the way forward such as mechanisms of redress and compensation. A credible prominent South African with an established track record should lead such a process.
Status: The Premier, Minister and the MEC have met with families on 15 December 2016 and on 1 February 2017, and on 18 February 2017 participated in the healing ceremony initiated by the families at the Freedom Park. The appointment of the Alternative Dispute Resolution mediator is being finalised.

18. Recommendation: The Gauteng Mental Health Review Board was found to be moribund, ineffective and without authority and without independence. As a structure its terms of reference must be clearly defined and strengthened in line with the National Health Act and the Mental Health Care Act, and its independence and authority re-established.
Status: The MEC has commenced the process of implementing this recommendation.

The Acting Chairperson thanked the Health MEC for the report, and asked what the total number of patients was that had to be moved.

Ms P Samka-Mququ (ANC) asked questions in Xhosa, which the Acting Chair translated on her behalf: What is the situation with the patients who died, and also the unidentified bodies. Have their families been informed? How is the DoH liaising with the families?

Ms T Mampuru (ANC) thanked the Health MEC for her commitment and for attending the Committee meeting on her own. She asked that the acronyms used in her progress report be spelled out.

She said that there had been a report on television where some of the social workers from Life Esidimeni had spoken, saying that they had worked there for over 30 years and they also had not known about people being moved to unlicensed NGOs. How was the DoH going to deal with their wrecked souls, because they also needed to heal emotionally? What steps are being taken in terms of the licensing of NGOs, and how far along is that process? What compensation will there be for the families of the deceased patients, or was there any insurance? If the families of the deceased were not consulted on their removal, that is a matter for human rights. Are the new NGOs that the remaining 22 patients have been moved to properly licensed, and have the patients’ families been consulted?

The Acting Chairperson asked if Life Esidimeni is the same thing as the Gauteng Mental Health Marathon Project. How many patients in total were supposed to have been relocated? What prompted the removal in the first place? Were they all from one institution? She expressed puzzlement over the high number of deaths, and asked if they were ill for reasons other than mental health. And, as so many senior officials in the DoH have been suspended, is the Department now in tatters?

She said she was pleased about the steps that had already been taken on the Health Ombud’s recommendations.

Dr Ramokgopa informed the Committee that Life Esidimeni is a private company, a subsidiary of a private hospital group. It is the only one of the private groups that had a division dealing with chronic mental illness. The hospital group bought into this long-standing institution. Life Esidimeni as a group had different areas where they had these services, including Baneng Care Centre. There were others in other areas in Gauteng. Part of the agreement was that the facility must rehabilitate patients, but the Department of Health decided to terminate the contract with Life Esidimeni and spread the contract over a number of NGOs, especially those closer to district health services. There was a plan that was rational and was even acknowledged by the courts; but when families tried to stop the removals, the implementation by the team was not aligned to the original plan. The total number of patients now in public hospitals – such as Lenasia South, Tara and Weskoppies – is over 700. Those that have been identified as critical for moving, where 355 patients come from NGOs that were in the red and 83 patients were found who did not come from Life Esidimeni, as not previously part of this project. 1 166 patients are now to be moved, inclusive of the three who have already been moved. The rest are in public hospitals or have been discharged or have passed away.

Dr Ramokgopa said that, where families have to be consulted and yet cannot be found, the Mental Health Review Board serves as a statutory oversight. Already more than 33 families have been communicated with, and they were all at the receiving sites where the patients were moved to. All of them were happy. The deceased patients had other conditions that caused death, such as diabetes and bed sores. Mentally ill people are vulnerable to other conditions, and they might also forget to eat or drink, so they need intensive care. The process of post mortems will provide the conclusive causes of death.

Dr Ramokgopa responded to the question of whether the DoH is a shambles or not, by saying that it is apparent that the team did not work in a co-ordinated manner with other units, but also that the facilities, even though they were licensed, were still not compliant. Those issues are being rectified. The Department is working with the Department of Home Affairs to track and trace those patients for whom there is no access to families, before they are buried.

Many staff members from Life Esidimeni were absorbed into the DoH. The unions were insistent that the workers not lose their jobs. She agreed that they need emotional support, and the reputation of the whole DoH is at stake, although a lot of good work has been done elsewhere. The DoH has met with the unions and reflected on this together. The issue of compensation will only become clear once the mediation process is over. There was no insurance at all.

Dr Ramokgopa said that the Department should be able to give a comprehensive report (not just a progress report), within 90 days from 1 February 2017. She acknowledged public anxiety about the matter, and said that with the additional staff that has been taken on, a larger number of patients will be able to be moved.

The Acting Chairperson said that the Committee was very concerned about the DoH’s operations, and that clearly there was much room for improvement. She wished the Health MEC all the best for the difficult work that lies ahead.

The meeting was adjourned.

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