Lessons from the Elim Care Group Project

The book “The Community is my University” (see article in this Bulletin) documents experiences of a village-based health and development project in the northern parts of South Africa from its inception in 1975. I was asked to reflect on my time with the Elim Care Group Project and to draw lessons useful to the continued involvement of Swiss organisations in health in the “South”. While I am glad to do this, I want to emphasize that the real “heroes” of this project are:

• …the Care Group Motivators – of whom Selina Maphorogo stands out, but even Selina will let you know that she is not the only one!
• …the “Eye Doctor” Erika Sutter – whose long term commitment to eye health rather than to curing eye disease opened doors to effective intervention that would otherwise have remained closed;
• …the Care Group Members – whose selfless work in spite of economic and political adversity made – and still makes it all happen;
• …the Dutch doctor Peter Kok – whose interest in community health became the nucleus for the outreach services of the “Eye Department” at Elim Hospital;
• … Elim Hospital’s director Pierre Jacques – who allowed scarce time and resources to be used for this experiment and later grew to be very proud of it;
• …two key donors: DM-échange et mission from Lausanne, and especially the Christoffel Blindenmission, which stayed with the project since its beginning – a perfect rarity in this day of quickly swinging donor interests and limited global attention span;
• …ironically, the apartheid’s homeland policies which created so-called “comprehensive health systems” in the homelands whereby all health care in a geographical region fell under one authority and under one budget: it was this feature that allowed the Care Group Project to obtain resources for community work that would normally not have been available if hospital budgets were only meant for clinical services;
• …and, perhaps, me, who kept asking the Care Group Motivators the question “why” and “forced” them to start taking much greater ownership of the organisation when Erika had left.

The book is about one specific actor: Selina Maphorogo, in project terminology, an “intermediary” between the ophthalmologist and the community she was serving. It is about her wisdom, vision, sense of humor, and the impact this had on health in and beyond the Elim district in South Africa.

The book is full of stories from Selina – some funny, some serious, some sad – but always inspirational. As far as I know it is the only book documenting a development experience through the eyes of an “intermediary” – as usually it is through the eyes of the project leader or external evaluator. Given all the peculiarities of “time, place, and person” – once we have read the book what else would remain but a warm feeling for some wonderful people who did a wonderful job? However, with Peter Kok in the beginning, me at the end, and Erika throughout, we felt that we should try to extract some lessons that could go beyond the personal, the particular and the time-bound, and come up with a few key messages that could extend the Care Groups beyond their locality to anywhere else where communities can play a stronger role in improving health and health care.

For that reason, we wrote the postscript to the book: it is an attempt to isolate those lessons that could be implemented elsewhere. And there are many, and the list may be growing still with more time to consider “the Care Group experience”. I want to highlight a few issues only, some of which have only become clear after the postscript was written.

People

One response to the Care Group experience is that much of it is co-incidental, not reproducible, linked to a group of people who came together at the right time in the right place. Another response is to acknowledge that there are many imponderables, many issues that can not be measured certainly not “post hoc”, but that there is nevertheless more than mere coincidence.

There are people who make things happen: nowadays called “leaders” or “social entrepreneurs”, and they are key to any successful programs: they dare taking risks, they are prepared to work unremunerated overtime, and they are willing to share.

Who are they? How can they be identified? What can we do to make sure they grow to full potential? What environmental changes will enable maximal or optimal impact of these people? – When you are planning Swiss supported projects, you need to address these issues and more: how can you “enter” communities and find these people? How can this be done while maintaining transparency? What training do health workers require to help identify and work with such individuals? How can one distinguish true “leadership” or “social entrepreneurship” from a false one?

We did not have the terminology and concepts of “social entrepreneurship” and “leadership” as we have it now, and, using the wisdom of hindsight, encourage organisations working in the South to make “people” and all that goes with it an explicit issue for consideration, training, strategizing, evaluation, and budgeting.

Interaction between government health service and the NGO

The Elim Care Group Project had a peculiar construction. To act on the health needs related to trachoma control and blindness rehabilitation, resources were needed that were beyond the routine health budget for the area. Through personal contacts, Erika Sutter obtained small financial support (I don’t think it has ever been more that CHF 25.000 per year with an incidental addition of a vehicle). As government employee, she could not keep bank accounts, so money would come in through a neighbouring NGO and through her personal bank account. As in Erika’s case, I was a government employee and director of the project, but we managed to have bank accounts opened that could be operated by Care Group motivators. We managed to get a clerk seconded to the project. In the beginning, all motivators were recruited from existing nursing staff, usually the lowest in the hierarchy: assistant nurses. Later, the project hired other motivators from its own budget. Cars were sometimes used from the hospital pool, some cars were donated to the Care Group project and could not be used by anyone else, while some cars were donated to the hospital for use by the Care Groups – but, as things go, would also be used whenever there was a need for transport by anyone else. Annual financial audit on donor funding only was done through external auditors, while hospital accounts were, of course, the responsibility of the governmental auditors. Finally, in moving towards an even more independent health and development association, a new “Care Group Association” with own legal status and own accounts was brought into being, yet care group motivators remained on the hospital staff establishment.

In brief, over the years, a complex interaction between governmental funding of large costs (staff and buildings) and donor funding of project costs has developed which would now be called a “public private partnership”. Overall, we feel that this has been a synergistic relationship that should be tried and adapted for use elsewhere. With the benefit of hindsight, we would possibly have done some things differently, but we guess that also governments may have done things differently. In fact, the drive towards an independent “Care Group Association” reflects to an extent the frustration felt by the NGO-part of the project with slowness, inflexibility, and possible misuse of project resources. Yet, it should not be left there as it may have been a wrong response. In retrospect, we feel that this particular “public private partnership” had advantages and disadvantages.

The Care Group Project has benefited in many ways from being part of the Public Health Services:

• The financial benefits were considerable, since most of the cost of salaries for project staff was borne by the Government.
• In addition, the Project gained because staff did not have to use a lot of energy for fund-raising for the core activities, and could concentrate on their work.
• Continuity was guaranteed because the essential activities were not dependent on donors who might withdraw their support as their own interests shifted.
• When financial assistance was needed for a special project, the support from the Health Services also meant that donors were not difficult to find, since salaries were not needed and consequently, the proposed projects appeared to be “cheap”.
• The security that a government job provides for individual grass-roots health workers, who usually belong to the poorer section of their society, is another important argument in favour of partnership with the Health Services. In the Care Group Project, the fact that the staffs appreciate having a government job has helped to ensure stability and continuity. Many staff members have stayed with the Project for more than 20 years. The fact that the Motivators are part of the pool of assistant nurses in their hospital has advantages and disadvantages. It means that a Motivator who is not really suited to working in the community can go back to hospital work instead of losing her job – but it can also mean that when a hospital is short of staff, Motivators can be withdrawn from the Care Groups and ordered to return to ward duties.

There are, however, disadvantages in having a mixture of public and private support. In any project involving co-operation between a number of organisations there will inevitably be tensions about priorities for action and allocation of resources. Every NGO has its own aims, which are supported by the vision of its donors. These aims may not correspond with the policy of the government, which has its mandate as the representative of the people. This is something that was perhaps not considered sufficiently when everybody was busy with the day to day running of the Care Groups. At a personal level, tensions can arise between staff employed by the government and those employed directly by the project. Ensuring a good relationship between these two groups demands much diplomacy, which was another issue that was neglected in the early days of the Care Groups. The Motivators are often considerably harassed by serving several masters. As Health Service employees, they are answerable to the nursing administration. The senior nurses in the hospital, who are their immediate superiors, have never been personally involved in the Care Group Project and often do not understand what they are trying to do. In addition, the Motivators are responsible to the Project leadership – originally the project director, who was a medical doctor, and now the elected Top Executive. And finally, the Motivators are the people who are directly in contact with the local Care Groups and their communities, who also have expectations.

Political implications of Government support: In the days of the Apartheid regime, which regarded all development outside the Apartheid ideology with suspicion, it was a great help for the Care Groups that they had support from Government departments and were working within the government health system. A sympathetic Secretary of Health in the Gazankulu Department of Health and Welfare, and the support of the hospital's medical superintendent, provided sufficient leeway for the successful growth of the movement under an otherwise hostile regime. This good relationship protected the groups from threats of interference from the “secret police”.

Though government support was valuable for the Project in those days, it also caused problems with acceptance. If a project is seen to be supported by a government, its image depends to some extent on the acceptability of that government. Although the Care Groups were a non political organisation, as long as the Apartheid Government was in power their status as part of the official Health Services labelled them automatically as a creation of Apartheid. This was felt strongly abroad, and also within South Africa, where many of the doctors working in community health at the time mistrusted any organisation that had links with the Government. Locally, the groups were often confused with the Gazankulu Women's Association, which was created by the government as an agency for Apartheid propaganda. This even resulted in the groups becoming targets of abuse during the period of unrest just before the change of government in 1994.

Internationally, it may have been because of South Africa's reputation during the first decades of their existence that the “Care Group model” never became as well known in the world at large as it should have been. The political situation also had an adverse effect on fund raising. Some potential donors were reluctant because of the close relationship with the regime, while others, especially multinational concerns, were frightened of getting involved with a potentially “subversive” organisation which would not toe the government line.

Focus on inputs and process

One of the most vexing questions in health and development that have confronted me, and many other health workers, is that “communities” are often invoked as a solution to development problems that the collective of rich countries and international organisations can not solve. If health care for all is the aim, we invent primary health care. If it is clear that we are not going to reach all people with Primary Health Care, we invent community health workers. Even today, the new call for one million health workers for Africa represents the same response “in a new dress”. We expect that illiterate village women (mostly) living often under less than optimal political conditions, without access to technical support and information, and – in their personal capacity – living in economically marginal situations are the solution to Africa’s health problems. Is it really fair and reasonable to focus on health impact as main outcome measure – given that the scene is set for failure due to gross under-investment, too short time horizons, and starting with such low capacity that it will take years just to build the capacity to achieve our intended aims.

So it is with the Care Groups. It is highly unlikely that one doctor and five assistant nurses in one hospital would change health in the Northern Province. Even counting the ten or so other motivators in other hospitals, and a bit of external funding (again: think in the order of CHF 25.000 per year – not much more), the odds that this group could eradicate poverty and disease are slim indeed.

However, when also counting the efforts of community members, around 6000 active members around the northern part of South Africa when I left, all of whom had and disseminated health knowledge and practice, some income generating skills, and, above all, a spirit of sharing, - well, then some optimists among us may see that impact on health, poverty, inequity and development is possible. But for this to materialise, lots of attention needs to be given to enabling 20 assistant nurses and 6000 – mostly illiterate – women to act where their action can be meaningful. And that requires capacity building, joint planning, developing understanding and trust, monitoring and evaluation in empowering manner, and, training, training, training… at all levels in many areas.

This is what I mean by focussing on “inputs and process”: to aim for general health impacts in periods of five years is simply incompatible with the notion of empowering communities in resource-poor environments. What could we aim for instead? - Let me give some short stories as illustration:

At individual level: the key to self-development is self esteem. A care group woman told Erika that since joining the Care Groups, she gets much greater respect from her husband. This happened after their child had diarrhoea and the mother managed to handle it using oral rehydration fluids: her husband told her she was “as good as a nurse”! Self-esteem is a crucial first step in enabling individuals to make use of the development opportunties offered through aid and support.

At the group level: the Care Groups are, in effect, a local adaptation of the global concept of Community Health Worker (CHW). The project started as a Community Health Worker training programme, but the first group of assistant nurses made it clear that they preferred working in and with groups rather than as individuals. But groups have dynamics that are different. Care Groups have chairs and treasurers, open bank accounts, have uniforms, rules, schedules, and membership obligations. Groups need “servicing”: they need information and inputs, exchanges, and updates. They need to get together, learn and celebrate. All of this is invisible, it is “process and input”, yet without these, there would be no Care Groups.

For the Motivators: while it is easy to see how an assistant nurse from the eye hospital can become a translator and even an educator for conditions like trachoma, it is a different matter altogether when we talk about assistant nurses giving health information on a wide range of health topics, facilitating implementation of communal gardens, promoting the use of wonder boxes and introducing new species of trees to ease the firewood shortage; it is different still if these same persons focus their attention on income generation like in brick making, sewing clubs, and even credit unions. For this to happen, the Motivators need information, training, and refresher courses afterwards; topics to be addressed fall in the areas of health, politics, economics, home economics, English, literacy, small business skills, and so on; and it needed continuous convincing of health authorities that such activities are “health related”… as you can imagine. These are all inputs and processes … all without immediate measurable results …

And, for Selina herself: as she is the centre of this book. In fact, the book describes many inputs and many processes all of which were important in getting us and her where we are after 30 years. Perhaps I can add a note that is not in the book: Selina mentions that she went to Manchester for a year. Erika had organised a scholarship and my wife got her a passport, visa, ticket and on to her first air travel. In Manchester, she would learn about nutrition and health. Yet, after her year, I remember not her progress in nutrition, but only three learning experiences that she shared: i) “seeing white men sweeping the street” – in the context of South Africa in 1980s that was a major political awareness raiser; ii) “putting pennies in the heater” – as a reason to appreciate the climate back home; and iii) “being confronted with a ‘flasher’” as a reality check on western European culture! Were these more important than the actual course? Whatever the relative importance, all of these are “process and inputs” literally taking years before they result in demonstrable impact.

The lesson is clear: for any but the most short-term emergency operations, far more careful planning and resources should be invested in the “soft” aspects of projects: the training, confidence building, general awareness, micro and macro political context including the political economy of health if one can reasonable hope for substantive and sustainable impact in the long term.

Sustainability and long term funding and commitment

This leads to a small, but crucial point. I estimate that the total donor input as part of all project costs was very low compared to government funding: perhaps 10% with incidental peaks for capital donations like vehicles. Yet it was this additional resource that allowed uniforms, training courses, communication, putting up fences, and running such support schemes such as “revolving bulk-buying of peanuts scheme”: through bulk buying one can reduce costs (in itself an important lesson); peanuts are locally used, but were not used as weaning food … this was promoted by the Care Groups to combat malnutrition, and was generally well accepted. But, as demand grew, a revolving loan scheme was invented. Care Group members could order a large bag, and share with families around them. They paid the actual costs of the bag, and split the costs between them. The Care Group Project would provide the vehicle and transport. At any one time, over R30.000 (think of this as a scheme of CHF 300.000 in your own town) was in circulation, and, using small receipt books and small cash, I am not aware that even R1 was actually lost! Such an important intervention against malnutrition, driven by the people themselves, is not possible in the confines of a public sector hospital budget. Long term funding for such key “value added” interventions remains therefore a necessity.

The ongoing support of one donor in particular (CBM) has seen a project through and made these activities possible. Any project will go through difficult times, and the Care Groups have not been an exception. Any “hard” evaluation at these times could have questioned the “usefulness of continued aid”. Yet, development takes time … and if there is one lesson I would like to leave is to ensure that every plan and every project is attached to a long term vision – more like 30 years rather than ten! This applies to government aid, donors as well as technical support.

Interaction between Care Groups and health services

Given the unique structure of the Elim Care Group Project, the interaction between Care Groups and health services is a major feature. While no formal studies were done, I want to illustrate the two aspects of this interaction with two short experiences.

Care Groups as extension of the health services: Besides their usefulness in community based health service provision and health promotion, the Care Groups were instrumental in health research as well. An example was the blindness survey in 1986: by asking the care groups to do a first level screening (by counting fingers at five meter distance … aiming for a sensitive more than a specific test) we could screen over 18.000 people throughout the area in a matter of four weeks. It is still the only such survey in South Africa, and it is only possible through the active participation of a community-wide initiative like the Care Groups.

Care Groups putting pressure on health services: Communal gardens as means of nutrition prevention do not generally score high on the priority list of ministers, hospital managers, and doctors. Yet, it can be made to happen: in this case, a previously well functioning garden was ruined because a piece of the fence was stolen, and the chief’s cattle ate the vegetables. No amount of discussion between the group and the chief could make him keep his cattle off the garden and restore the fence. Until this issue was written up in our ongoing learning tool “CARE Magazine” …which happened to be strategically placed on the desk of the Minister of Health. To make a long story short: one day a gleaming Mercedes appeared at the chief’s kraal, and not long after, the fence was repaired.

Conclusions

I have highlighted some of the key lessons from the Care Group experience. We realise they are “post-hoc” and of necessity not representative and perhaps not objective either. Yet, it was the best we could do to attempt a generalisation from this particular project. There are many more issues, and perhaps the biggest lesson overall should be to increase the learning potential of our (and any future) interventions. By making explicit budget provisions for monitoring and evaluation, by providing technical support for this to community groups, and by ensuring adequate long term impact measurement and reporting, we could have learned more and more quickly.

Nevertheless, if the messages of i) having a strong focus on “the people in the project”, ii) defining a synergistic relationship between community and health service, iii) of investing in “inputs and process” at a par with to the focus on “outputs and outcomes”, and iv) committing to long term involvement will be heard, then the Elim Care Group Project will have contributed beyond “Gazankulu”…

*Carel IJsselmujden is a public health physician and epidemiologist. After his studies in Belgium and the Netherlands, he went to Elim Hospital, where he worked from 1980 to 1986. For most of this period he was head of the Community Health Team. Since then, he has worked in health care and environmental health services, as well as in academic public health education and research ethics training. Carel was the founding Director of the University of Pretoria’s School of Health Systems and Public Health until his appointment as Director of the Counsil on Health Research for Development COHRED, based in Geneva, in January 2004. Contact: Carel@cohred.org. Reference: From health problems to an understanding of health and well-being. Postscript by Erika Sutter, Carel IJsselmuiden and Peter Kok, In: Selina Maphorogo and Erika Sutter: The Community is my University. A voice from the grass roots on rural health and development. Amsterdam 2003 (KIT Publishers), ISBN 90 6832 722 4.