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Eleanor Hill
Health is such a broad subject. It involves anything from high technology heart surgery to the simplest of home remedies for the common cold. The conditions and people dealt with by health practitioners also cover an enormous range: from compound fractures to schizophrenia; from infectious disease to alcoholism; from sufferers of arthritis to sufferers of torture. The context within which health care is provided varies along a number of dimensions: from centralised, government-controlled provision of a service which must cover an entire nation to small-scale private sector provision either for profit or on a charitable basis, with all gradations in between; from predominantly professionally trained practitioners to provision of care in the home by family members. This is without the common distinctions of curative and preventative care, of public or community health and personal clinical requirements.
A Focus on Health at the Margins
The challenge is how to address the topic from a clear perspective without losing sight of the need to deal with its complexity. The more I thought about the nature of Development in Practice as a journal, and the working context of its readers the more one focus appeared to be the most appropriate perspective to pursue. Dealing with health and health care provision at the margins. Even this leaves me with a broad canvas to cover as these margins are found in many ways and their nature differs across contexts, but it is at the margins that needs are most likely to be most acute as well as most overlooked. It is also at the margins that we often find the most interesting and exciting work, the most challenging views. And it is by moving out to the margins that we can look back at the whole field and see what remains to be dealt with which is currently neglected.
An example of the way in which a marginal situation can be liberating was shared with me by a colleague working in Angola throughout the war. He had been responsible for a hospital and a number of satellite facilities. The central hospital directed and controlled work for the entire programme, with little devolution of authority to staff at the periphery. With the ongoing war, the deterioration of infrastructure and the increasing danger of travel between facilities, this became an untenable system. In order to keep facilities operational it was necessary to allow them individual control of their programmes, priorities and activities. Despite the persistent difficulties of the conflict situation, this decentralisation allowed staff to continue to provide a health service, with extra enthusiasm from the effect on morale.
Within this example it is easy to see how the definitions of what is central and what is marginal can alter very quickly as a situation evolves. Peripheral staff and facilities who were of little relevance in decision making or policy development become central figures as the locus of control alters. In a parallel manner the central facility of the hospital and its management become somewhat marginal to the everyday operation of the system as a whole. Within the new context, other margins would become noticeable to which attention can then be directed. This changing nature of the margins in relation to health and health care provision means that it is essential to keep analysing and reviewing any situation. Focusing on the margins assists in avoiding complacency through this constant requirement for re-analysis..
Where do the Margins Lie?
How to define the margins? One of the simplest means is to begin with those areas where health is poorest and explore the way in which such a situation may be considered marginal. The first characteristic to spring to mind is that very often these people are at the margins of prosperity, surviving with a minimum of resources. Physical marginalisation is another common feature. People may be distant from the centres of provision either in miles or in time, due to rough terrain and poor transportation systems. Additionally they are often distant or marginal in both a cultural and political sense, not belonging to the groups holding power, speaking a minority language or simply of no importance within the political decision making process.
This pattern of marginalisation persists at both macro and micro levels, creating overlapping layers of exclusion. It is of course easy to generalise, to designate particular groups as marginalised and then focus attention on them as the most needy. An instant list is easy to construct: women, children, the elderly, the mentally and physically disabled, the displaced.
But it is vital also to consider the ways in which people overcome or overturn such situations, how they manage despite all expectations to maintain a measure of control and a central position in aspects of their lives. In short, we must enter into the real complexity of each situation to discover where its margins are and who operates at these margins. It is this which presents the most exciting and most difficult challenge as it constantly faces us with the assumptions we make and the stereotypes we construct, demanding that we reconsider, over and over again how we make sense of the world.
Another personal anecdote helps to illustrate this. I remember watching a documentary television programme about the Maasai in East Africa which centred on a ritual through which women could overcome infertility. As the programme progressed it appeared to me that these women, for whom infertility is an extreme misfortune, were entirely without power and destined to remain at the margins of their community. Without children as proof of their value to the community they were of little consequence, and even this small chance of altering their plight was to be denied them. But just as I was reaching a point of equal sadness and anger on their behalf, the position changed. An older woman counselled the younger ones who were in need of the ritual to threaten the men with tears if they did not oblige in preparing for the ceremony. To an outsider this seemed an idle threat, of no particular consequence: womens tears are a frequent enough occurrence but do not often seem to bring dramatic change, but within this context it was sufficient. Power and control within a situation can be held and exercised in many ways, some of them unexpected and unrealised and it is this which defines who counts as central and who marginal within any specific setting.
The Margins Within the Health Service
It is not only the general population who can be marginalised in this way. The same is often true of those who are charged with providing care to these populations. Practitioners too may be operating in the context of few resources, where the bulk of a budget is spent on maintaining central facilities. They may be isolated from professional discourse and discussion, from the latest ideas and technology. In fact they often suffer a double marginalisation for additional to this professional isolation, they may well be isolated from the population around them. This separation has educational, cultural and psycho-social dimensions, as all these factors operate to create distance between the professionally trained health practitioner and the lay population. This distance may be expected by those such as myself when choosing to work in a completely different culture, but it is just as acute when working within ones own culture. I have been forcibly struck in the past by how little I know of the realities of living on state benefit, or of surviving in a violent domestic situation, yet these are the realities for many of the women I met as a working midwife.
In a very real sense a health service can be viewed in the same way as any other community with similar distribution patterns of power and control. It can be hard for those working in the periphery to believe in their own capacity to take decisions or alter policy. Large bureaucratic institutions such as ministries of health do not lend themselves to flexible working practices. In many cases the training of health workers also discourages them from showing too much initiative. Safety lies in following the prescribed procedures, carrying out tasks exactly as specified and filling out the reports required to show this is being done. This is perhaps especially true of non-medical staff, upon whom much of the burden of caring falls in developing country settings. Yet it can be these same staff who are expected to encourage the community to become active and participate in decisions regarding health care provision.
The following illustration is not unusual. For a variety of reasons (international pressure, budgetary constraints, political insecurity) policy makers decide that more community participation is required to improve the efficiency of the health service, especially in the remote rural areas where provision has always been problematic. They issue orders that committees must be formed, action plans drawn up and local budgets prepared and submitted, all with the full participation of the local community. The local health worker is naturally a little apprehensive. Her initial training did not indicate how this could be achieved, and the few brief in-service sessions since qualifying are not enough to instill confidence. Besides which she does not believe the local community understands health issues properly. They never appear to take notice of her educational sessions, persisting in drawing water from the river. The communal latrines remain unused. How can she possibly trust them to make decisions concerning health care? And who will get the blame if the monthly statistics show a deterioration in the health of the community: she will. The result is that she feels alienated from the community and abandoned by the health service which she feels is betraying her.
Counteracting this marginalisation within the health service is a difficult but crucial task in which both initial and ongoing training are fundamental. Keeping curricula up to date in a rapidly changing world is no easy thing. Once trained many health workers have no further contact with their training institutions continuing to work according to their original instruction. Others want desperately to advance their knowledge and skills but face barriers in achieving such a goal. Funding is difficult to acquire, study leave is rarely granted, family commitments can make travelling for studies impossible.
Changing Policy Priorities
Another important way in which marginalisation occurs is through the changing priorities of health care practitioners and policy makers. The direction of the endeavour of health professionals can be deeply affected by the current fashions within these professions, not only in relation to which specific conditions receive research attention, but also in terms of the approach followed in planning and delivering services. It is interesting to look back over the way this has differed through time and differing political contexts.
As with most aspects of human society, understanding of and attitudes towards health and illness have altered over time. Pre-20th century the commonest attitude towards ill health was a pragmatic one of symptomatic care rather than cure. Among much of the worlds population this remains the predominant pattern. Certain well known conditions or disease entities may be deemed curable, but otherwise practitioners provide support and encouragement while the natural healing process occurs and hopefully resolves the problem. Remedies used have often been tried and tested through generations, but may also have arisen through idiosyncratic individual belief. The priority among health practitioners is to provide emotional support and physical care, with an emphasis on the development of a good 'bedside manner' which will inspire confidence and so help healing. If death results, the humanity of the practitioner may be important in helping the bereaved come to terms with their loss. Within this framework the health worker is a rather marginal figure as their potency is limited. The support obtained from family and social networks is a much more central consideration. Health, illness and death are woven into the fabric of everyday life with most individuals having a role to play in their maintenance or prevention. Ritual and ceremony are important in regulating the emotional burden which accompanies disease and death, placing those who perform these services in a prominent position.
More recently the allopathic medical approach became prevalent. Advances in the understanding of pathology and disease transmission coupled with those in physical and biological science provided spectacular cures for a wide range of conditions. Here the practitioners desire was to display their mastery of disease and its treatment, perhaps in the face of ignorance and doubt on the part of their patient. Bedside manner was no longer so crucial so long as the patient took their medicine and followed the doctors orders, for the 'doctor knows best'. The era of the 'magic bullet' or the 'pill for every ill' began with great promise, but it brought with it a tremendous widening of the knowledge gap between practitioners and their clients. This brought a startling change to the balance of power and control with the health worker, especially the medical practitioner assuming a very central position. Other actors, family and community members were pushed out to the margins, their influence undermined by the new advances.
A gradual sense of disenchantment and frustration set in as the limitations of scientific medicine became clearer: resistant strains of infectious agents; adverse reactions to drugs; the failure to resolve common and urgent problems. While the doctor may know best, he or she did not seem to know enough. Eventually this led to a thorough review of health care provision and the optimum mechanism for achieving good health across the whole population. While high technology medicine had claimed centre stage with its dramatic gains, the failure to address other issues remained a serious concern. Smallpox eradication proved to be a peak of achievement which has not since been matched. Malaria, diarrhoea, pneumonia and malnutrition all continue to take a high toll of human life. Attention turned to the need to expand health care beyond the limitations of the medical model as changing perspectives made different issues central to the debate.
Primary Health Care as envisaged at the 1978 Alma Ata conference attempted to re-orient the provision of health care towards an holistic, preventive approach. It laid emphasis on the social, economic and political aspects of health and disease, stressing the necessity for inter-sectoral work and collaboration. This was an effort to expand the focus and responsibility for health from the medical professions to a far broader base, to some degree returning to an aspect of earlier times in which care and cure were obtained locally from personally known practitioners. Given the radical nature of this reorientation, it is not surprising that it both met with resistance and proved to be a much more complex task than was initially realised. It is a struggle which continues with new manifestations of PHC appearing in the form of 'community based health care', 'integrated health and development projects' and similar approaches emphasising participation, empowerment and decentralisation.
The cyclical nature of the movement from centre to margin and back again is clear, although there is no straightforward return to a past situation, rather a re-emergence of issues and concerns in new forms. The re-emergence of an emphasis on the social nature of health and the importance of social support networks in health maintenance which came with PHC threw up a number of dilemmas.
Participation
Within this new context the practitioner appears as a guide, an individual with specific technical knowledge which is put at the service of the needs of the community. The distance between practitioners and clients is reduced again as practitioners attempt to explain their understanding in terms which non-professionals can understand, and to adjust their priorities to those of the community around them. The pre-eminence of the practitioner is undermined still further as efforts are made to (re)learn more about non-allopathic approaches and local understanding of the means to achieve health and prevent illness. In this context practitioners feel themselves being pushed out to the margin as the centrality of their contribution is challenged. Having held such a central and important position for a considerable period of time, many are uneasy at letting go of the reins.
There is also the challenge of finding a successful mechanism through which community participation can be achieved. A great deal of effort has gone into the study of this. Health practitioners have learned skills in group dynamics, conflict resolution, team-building and community development in order that they may foster effective participation. At the local level in a large variety of contexts a measure of success has been achieved for which the reward has also been great. Provision of health care has become a joint endeavour between all sections of a community with each person making their own contribution to the whole, however small. Recognition of the value of differing contributions is now widespread. This process can be viewed as another example of the continual change from marginal to central positions of varying aspects of life. Health is often of marginal interest to the majority of community members: a concern only when it deserts them and they fall sick. Where participation is fostered the centrality of good health to a productive life is recognised and acted upon. Health becomes the hub at the centre of the wheel, holding everything together and allowing movement in the desired direction.
An additional benefit of this process is the way in which it builds trust between health workers and community members. This narrows the gap which the training of health workers and their professional understanding of disease may create between them and the population they serve. Practitioners come to recognise the importance of other actors in maintaining health and the value of their knowledge. An example is the work of SARTHI in Gujarat, India. While attempting to improve health care provision in the area it became evident to project workers that herbal medicine played a vital role in local practice. Rather than dismissing this as old fashioned or irrelevant, the project took an active role in discovering precisely how these herbal remedies worked and which conditions they could be used to combat. Unsurprisingly many of the traditional remedies proved to be effective against exactly the conditions for which they had always been prescribed. The result was an active encouragement of herbal gardens as a widely available and affordable health resource. A tradition and practice which had been marginalised by the success of allopathic medicine was reclaimed. More importantly it remained firmly in the hands of the local population who therefore kept a central role in their own health care.
Funding and Bureaucracy
Fostering the participation of the community is one challenge. It is quite another to integrate the contributions and programmes of different departments or sectors towards the achievement of overall health goals. One of the most serious barriers to this is the nature of departmental budgets and financial structures. Within the bureaucratic structures of governments it is necessary to maintain strict lines of authority and accountability. Money is allocated to achieve specific ends dictated by the priorities of the department. When staff from different departments try to combine their activities or create joint work programmes, creating the budgetary freedom to enable this to occur can be difficult. To which department will costs be allocated for transport, for joint workshops, for programme administration and can this be justified: how will differing priorities be reconciled: who will be in charge overall (and who will thereby feel pushed to the margins)? In a project to promote good nutrition through increased agricultural production of nutritious food does the health department or the agriculture department take charge? These are not idle questions and while 'common sense' may lead us to a conclusion that the responsibility must be shared, this is not easy to achieve administratively.
A further layer of complexity is added by the influence of those agencies which provide the funds for health care. Application deadlines must be met. Funding is for time-limited periods only. Hard evidence of the positive outcomes of past funding is required when applying for future funds. Each agency has its own agenda to promote. Certain activities are highly favoured and others less so, and this quite naturally changes over time. For those attempting to provide services over a sustained period of time the terror of failing to obtain funding is a very real one. The changing fashions within the health and development scene do not always work in their favour. Environment, population, gender awareness, urbanisation, combatting HIV, eradication of polio, these are just a few of the fashionable issues over recent years. All of these are important and should not be ignored, but many projects are mainly concerned with the continued provision of basic health care. Valuable time and energy are squandered as they try to fit their proposals to the latest 'fad'. Another current favourite is sustainability. Not only is this hard to define, it is also questionable whether the poorest countries or regions can ever hope to rely only on their own resources. After all it is not the case that developed countries do so, rather they draw on many resources world-wide. Of course sustainability is not merely a financial concept, it has other dimensions which are equally important: cultural, environmental, organisational, political, social.
The Economic Margin and Equity
Perhaps the most pervasive of recent fashions is the economic one. In this health is viewed from a predominantly economic perspective with cost-effectiveness and value-for-money taking priority. The reform movement sweeping through public administration and economic structural adjustment have made a significant impact on the thinking of health care policy makers. The terminology has changed again to costs, inputs, products, efficiency and less often investment. A by-product of this most recent shift has been that funding proposals for health related activities are increasingly being designed with these economic parameters in mind. The way in which this can potentially distort the project objectives and activities is open to debate, but there is no doubt that it is proving very difficult to translate health into purely economic terms. The costs of treatment or illness are slightly easier to estimate, but the benefits of health to an individual remain hard to pinpoint in monetary terms. Practitioners become caught in the tension between economic calculation of general costs and benefits and provision of humane care to individuals in specific need. It is a tension many find impossible to resolve.
Once again it is important to analyse how this new focus changes the centre and the margins within the health care arena. Assessment of health benefits in economic terms means that the importance of those who are economically inactive or invisible is reduced. It also undermines the value of other contributions to health and wellbeing which may be of a social or psychological nature. Taking an individual case provides an instructive example. I am thinking of an older woman I knew in Papua New Guinea. She did not perform any visible economic activity, being old and weak. On the surface she consumed rather than produced, thus there was little incentive to expend still more on maintaining her health. But what of the value of her knowledge and wisdom in the resolution of family or community conflicts? What of her value in the education of the children through myths, storytelling, and personal history? What of her knowledge of herbal and household remedies for common illnesses? How to assess in monetary terms the way in which she can call upon the support of other community members in times of hardship, just as she has assisted them in times past? These are vital contributions to the continued health of her community, but we have a long way to go before we can cost them. Too often the economic spotlight is turned upon the more straightforward task of assessing the cost of treating her arthritis or her chronic obstructive lung disease: inevitably, she shows up as a negative item on the balance sheet.
Another variant of the economic argument is that of the neo-liberalist urging us towards privatisation of service provision. While there may be some advantages to this, it is highly unlikely that they will accrue to those on the margins of a society. Of necessity private investors are interested in profit and will concentrate their provision where the highest profit margin can be gained. Governments may reduce state provision as private sector efforts increase, especially when financial constraints exist, using the argument that their provision is no longer needed as the private sector has taken over this responsibility. However, the net result is usually that services for the better off multiply, while those for the poor become still further undermined.
This pattern is in danger of being repeated on far too large a scale as the supremacy of economics continues unchallenged. Health and welfare services are cutback with the argument that they are too expensive and not cost effective. Money is diverted into production of goods for export in order to boost the economic growth of the country. That this is a short-sighted option may at last be becoming apparent to its promoters who have previously been dazzled by the sparkle of the nouveau-riche which it has created. Poorly fed, poorly educated, unfit people do not make for a prosperous nation. Evidence is growing that health is strongly affected by lack of social cohesion. Death rates are higher in those societies with the greatest divisions between rich and poor. The well known health risks of being poor are greatly increased if we know that our neighbour is rich. Social and economic inequality do not promote good health, even while they may lead to large profits for multinational corporations.
Compelling evidence of this comes most clearly from the developed rather than the developing countries. In the United States and the United Kingdom the health of the poorest has been declining despite increased expenditure on health care and despite economic growth. For the UK general health was best during times of national crisis: the major world wars of this century. Great efforts were made to ensure everyone had the basic necessities for life (through the rationing system) while at the same time the vital importance of everyones contribution to the war effort was strongly emphasised. Divisions were minimised and equitable sharing of the burdens stressed, with very real benefits for health. It is sad that it only seems possible to achieve this level of cohesion in the face of an enemy, for in all other ways war is undoubtedly the greatest of health hazards. Indeed the difficulties of health care provision within a conflict situation or its aftermath are one of the major preoccupations of the present time.
Conclusion
It is easy to be cynical about the way in which we provide for the health of those living at the margins of our society. We seem to make most demands of those with least resources. It is those currently without care who are asked to build their own facilities, fund the services they require and manage them in a gender- and disability-friendly manner. The demand for sustainability is made of those living in the most precarious of situations. Meanwhile those with already existing health facilities continue to manage and use them as before. But change comes in two ways, as revolution or gradually. Given the nature of health care provision with many well-established institutions and a large, often centrally trained workforce, revolution is unlikely. This leaves us with the option of a gradual process. It is at the margins of the health system that movement and change are most possible. It is where the system is not working that we are most likely to try out new ideas. It is those who are currently not included who can tell us most clearly what is needed to reach them. It is in this context that principles of participation, empowerment and equity become such potent forces for positive change through the way in which they shift the locus of control and redefine both centre and margin.
Health for all is by now a well worn slogan and the target date of the year 2000 no longer realistic. But it is a slogan which encapsulates much of the above argument for concentration on the needs of those at the margins. If we have the courage to learn from what occurs at the margins and apply these lessons to the overall system, then although we may never reach every marginal group, I believe we will move a long way towards a fully inclusive health care system.
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