Leprosy and the General Health Services of India: Prospects for Greater Integration
Yasir Al-Wakeel and Terence J Ryan, Oxford University
In India, the patient with leprosy has a choice to take one or more of several routes to care. They include government services, the private sector and dermatologists. They can visit several other systems of medicine including Ayurveda, Siddha and Unani. Some may go for homeopathy whilst others approach NGOs. There is a great need for integration, bringing together the many actors, and providing an equitable service with access for all. This qualitative study seeks to understand the heterogeneity of health systems in India through conducting semi-structured interviews with as many differing opinion makers as seemed necessary for coming to conclusions on optimal health care with the provision of general, continuous and comprehensive services. Project planning took place between November 2004 and January 2005, whilst fieldwork was conducted between February and April 2005, jointly between the authors. The timing of our tour was set to coincide with the 2005 Annual Meeting in New Delhi of “The Indian Association of Dermatology Venereology and Leprology” and “A National Seminar on Evidence Based Integrated Medicine for Lymphatic Filariasis, HIV, AIDS, Vitiligo and other chronic Dermatoses” in Kasaragod, Kerala. At the individual level, dermatologists are playing an active part in the treatment of leprosy. Private practitioners are trusted and many offer free or concession rates for the poor. However they have little involvement with the government services nor do they habitually refer their patients affected by leprosy to the Government services. On the societal level, dermatology is not producing the leadership in the field of leprosy that is required, with more lucrative fields receiving greater support and co-ordination from the top. Whilst Indian Systems of Medicine penetrate deeper into rural areas than does biomedical practice and are also cheaper to purchase, it is unfortunately the case that practitioners of Indian Systems of Medicine frequently have an extensive unqualified practice of allopathic medicine. The results of this study encourage the authors to suggest a variation on the “Integrated” approach that is focused on an allied health professional and usually a nurse working with a practitioner of Indian Systems of Medicine in a health centre, perhaps linked to a crèche. There should be a referral centre with experts at a higher level to manage the consequences of leprosy. This idea is already under consideration by Advisors to the Indian Government and there are several examples of the practice in India that are working well. Public Health orientated Dermatology should be promoted by the Profession of Dermatology in India to give support and especially to provide the training in the early diagnosis of common skin problems, to promote self helping low cost skin care, and the principles of wound healing in the Primary Health Centres. These too have good models already working well for leprosy but with little modification could and should be widely available to much commoner disorders such as the diabetic foot and the increasingly threatening problem of HIV/AIDS.
On the 30 th of January 2006 India celebrated the elimination of leprosy as a public health problem.
This success, however, is only part of the picture. India remains a stumbling block. Hence the best way to make the disease disappear is to stop looking for and registering new cases, or to cut the duration of treatment. It was this slight of hand that has been employed, changing the 24 months MDT regimen for multibacillary (MB) cases to 12 and that of paucibacillary (PB) cases from 12 months to 6. Overnight the prevalence halved, with countries like Ethiopia suddenly attaining their goal of elimination. 4 To this may be added the instruction in 2005 not to register persons with single lesions.(Rao 2006)
Cutting the prevalence of leprosy by over 95% in the space of 20 years is still an impressive feat. Yet this has had little if any effect on incidence. 4 New cases are being detected almost as frequently as ever and because many of these are children the source of their infection is problematical. Yet before invoking an extra-human reservoir 5 or the infectious nature of sub-clinical cases, and whilst admitting that research on these topics is essential, one must further scrutinize whether there are many cases diagnosed correctly but never becoming part of the statistics.
Much has been made of over-reporting of leprosy in India (ILEP Technical Commission Report August 2005), be it by re-registration, over-diagnosis 6 or the presence of non-existent cases on the register. On the other hand, under reporting exists, and it is possible that the scale is enormous. Sample surveys are an expensive epidemiological method for estimating the number of hidden cases. The few surveys conducted in India reveal a prevalence of 4-5 times the recorded prevalence. 7, 8 In addition, the number of hidden cases is not only accounted for by those with clinical leprosy not yet diagnosed, but includes those being treated, whether by MDT or not, by those outside the government services such as private dermatologists many NGOs or practitioners of Indian systems of medicine.
India is in need of an efficient and sustainable means of detecting leprosy early and providing access to MDT for as much of its population as possible. How to do it has evolved from a strategy using a focused vertical programme, to a drive to take leprosy elimination into a so called horizontal programme that amounts to relying on general health services to manage this disease. It also requires a policy of integration of available resources for the promotion of health and the management of disease. It is not the only elimination programme to aspire to do this. The global alliance for the elimination of lymphatic filariasis (GAELF) and the public health initiatives of the profession of dermatology are others that we have experienced. Other major disease programmes for TB, Malaria or HIV/AIDS, add to the burden and information overload of the general health services.
There is also the burden of the consequences of leprosy and the millions of disabled that attend for help. The Nippon Foundation estimate (Letter 30 Jan 2006) is that there are 700 colonies for leprosy in India. These disabilities are a consequence mainly of sensory loss. In the longterm, leprosy as a cause of disability may disappear but trauma and diabetes will not. The provision of care at the level of the general health services is in need of integration. It is negligent to spend resources only on leprosy when so many others might benefit. (W.Theuvenet Leprosy Mailing List March 5 th 2006) makes the point that by utilizing such skills on common problems the knowledge needed for the management of the rare case of leprosy will be preserved. Brandsma et al (2005) discuss the transformation of a leprosy hospital in Nepal into a rehabilitation centre that deals with spinal cord injury, cerebrovascular accidents and traumatic brain injury. Kawuma 2005 adds to the call by many to treat the stigma of leprosy in the same context as other disfiguring diseases.
It is now well recognized that in order to achieve the aforementioned aims of efficiency, sustainability, early detection and broad population coverage, an integrated approach is necessary 9 (Table1). Government departments promoting Integration need strengthening. Integration refers both to the process of moving from a vertical system of healthcare to a horizontal one, but also the process of involving all systems and paradigms of health care. It is a process that has been encouraged by the WHO for the treatment and control of infectious diseases since the 1978 Alma Ata Declaration with a primary health care system dealing with all manner of diseases in contrast to programmes handling single diseases. 10 How Leprosy elimination activities could best be integrated within the general health services was discussed by Rao (in 1996) in a report for the WHO. 11
Integration is not just about transforming a government approach from vertical to horizontal, rather it is a process that needs to incorporate full partnership in the health sector; bringing together the diverse ‘set of actors’ for a common goal. 12 In the context of India, with its vast and heterogeneous population seeking several different kinds of health practitioner, this is especially important. Heterogeneity and a failure of all systems charged with the delivery of health care to work as one, is also a problem still to be solved. As yet in India it is rare to find experts from several different disciplines problem-solving as a team. The “wound healing “ team is increasingly popular elsewhere and Dermatologists are prominent members and often the leaders in solving chronic non –healing, as in foot ulcers.
Taking Dermatology into General Health Services has been the objective since 1987 of the governing bodies of this profession through its International Foundation for Dermatology. 13 This acts under the aegis of The International League of Dermatology Societies (ILDS) which has Dermatology’s only official relations with the WHO. Focusing first on Africa, its Regional Dermatology Training Centre in Tanzania is a WHO collaborating centre in Dermatology STDs and Leprosy. Its two-year course and its University qualification has provided Africa with a new kind of Dermatologist. Upgraded from allied health professionals instead of from doctors they are qualified to provide public health dermatology. As noted by Lockwood and Kumar 14 “The contribution that dermatologists make to the treatment of leprosy is increasing.” But many National Programmes, including that of the country with the largest population 15 have been led by Dermatologists for decades. Dermatology’s answer to the inquiry made on LEPRA/WHO’s behalf by Georgiev (in 1992) 16 about the way forward for leprosy control in Africa was to establish two kinds of courses; a two year course to create planners and a one day course to train all primary health centre personal in how to manage common skin disease. An independent evaluation of the two year scheme in 2005 17 has found that the graduates are well taught and well qualified but underutilized in the field of leprosy. The second project which was in Mali has taught all health care workers in health centres to manage common skin disease in a context that does not forget leprosy 18 and there are indications that this allows greater detection of leprosy. 19 Improved diagnosis improves prescribing and reduces ineffective remedies utilization and thereby contributes to poverty alleviation. However until Primary Health Care is itself better utilized the prevalence of leprosy will not benefit from such improved skills. The International Foundation for Dermatology has recently signed a memorandum of understanding with the other WHO collaborator in Dermatology STD and Leprosy in Nanjing China. This is to explore how best to upgrade the knowledge of more than a million village health workers. This is a project working with health care workers that have a very small knowledge base on a topic with few teachers in a background of an Aids epidemic, 56 ethnic minorities and languages. It will provide very little time for the teaching of a minority disease such as leprosy and demonstrates the problem of overloading the general health services with information that is not a top priority in the hierarchy of health needs.
The Distinguished Dermatologist and Ambassador from Venezuela to the Court of St James and later to UNESCO, Professor Francisco Kerdal Vegas, campaigned a decade ago for Dermatology to lead a “Sine LEPRA” campaign. It received polite acknowledgement as did Dr Yo Yuasa, the President of the International Leprosy Association when he proposed a “A World Without Leprosy.” While organizations such as the WHO and ILEP have written encouragingly about Dermatology (“where leprosy has reached low epidemic levels, many would argue that the dermatological approach seems more appropriate.”) 19 no actual involvement of dermatology in the deliberations about the future of leprosy is proposed by ILEP members or the WHO, and a survey in 2002 by Paul Saunderson of members of the American Leprosy Mission prior to the International Congress of Leprosy 2003, found no support for a link with Dermatologists. The current belief that Leprosy will not so easily be eradicated has led some Dermatologists to seek a more realistic slogan and to look more realistically at what is on offer by all potential players.
India is one country with not only the most leprosy but also the most potential helpers from practitioners that care for the skin. It is with this in mind that we have been persistent in our promotion of this potential role and have now explored that potential still further.
We set out to understand the heterogeneity of health systems in India by visiting as many differing opinion makers as seemed necessary for coming to our own conclusions on optimal health care with the provision of general, continuous and comprehensive services.
This study is qualitative in nature. Project planning took place between November 2004 and January 2005, whilst fieldwork was conducted between February and April 2005, jointly between the authors. The main method for data collection was the use of semi-structured interviews with open-ended questioning, but we also set out to experience diverse “clinics” where leprosy might be focussed upon. The timing of our tour was set to coincide with full reviews in lectures at the 2005 Annual Meeting in New Delhi of “The Indian Association of Dermatology Venereology and Leprology” and at “A National Seminar on Evidence Based Integrated Medicine for Lymphatic Filariasis, HIV, AIDS, Vitiligo and other chronic Dermatoses” in Kasaragod, Kerala. The former provided an opportunity to meet with the private sector of Dermatology and the latter to meet Ayurvedic practitioners and senior Indian scientists promoting integrated medicine.
The many so interviewed are listed at the end of this review. They included Senior Scientists, Dermatologists with a special interest in leprosy, Ayurvedic Practitioners and many NGOs concerned with leprosy. We visited small hospitals in tribal areas and entered into discussions on the role of nurses in India. We also participated in a “Skin Camp.” In 2006 we visited a few more NGOs, reported back to Dermatologists at their annual congress, and continued to ask questions about record keeping and national statistics.
Government Services: Overworked, Unattractive and Unable to Meet Needs
The Indian government has a long history of commitment towards leprosy. In 1955 it launched the Leprosy Control Programme, stressing the importance of education and rehabilitation. The programme was relaunched in 1982 as the National Leprosy Eradication Programe (NLEP) following the recommendation of the Swaminathan Commission in light of the efficacy of MDT. 20 Yet, commitment could not always bear fruit due to a variety of limitations.
There are 17,000 public hospitals in India and 24,000 primary health centres. Only 38% are adequately staffed. The primary health structure varies from place to place, with states such as Tamil Nadu having a well developed infrastructure as compared to states such as Bihar. Of every 100Rs spent by a patient on consultations in India, 82 Rs go to the private sector. (90% of the Budget is for allopathic medicine and so Indian Systems of Medicine receive very little financial support). India lies at 171 st place of 175 countries for health care spending, contributing only 0.9% of its GDP. However, with the aim of increasing this, a Commission on Macroeconomics and Health has been set up to investigate the possibility of higher health spending and its impact on GDP. The reality remains, for the time being at least, that 24% of villagers cannot afford health care and only 0.2% of the population have health insurance. Consequently, the government services that are free are overworked and unattractive. Even the poor try not to use them or to short circuit them and use the private sector, traditional medicine or NGOs. 40% of those faced with an acute disease or at a late stage in a chronic disease resort to borrowing or the selling of assets to pay for healthcare rather than make use of the available government services. It is a scenario in which diseases that do not kill, such as leprosy, and diseases that make one unwelcome in a queue, also like leprosy, will be driven away from government services. In our study described in this report, we were repeatedly told that patients commonly avoid presenting to government services. There are also written reports 21 which show the difficulties experienced in the training and function of NLEP multipurpose paramedical workers and which suggest that midwives and government nurses of preschool children would be more appropriate for managing leprosy in women. Furthermore patients feel abandoned by Primary Health Centres in which their care has been thrust upon “an unwilling and apathetic staff.” 22
Those that do obtain their MDT from government services often find themselves spending under three minutes in a consultation with a doctor who is battling to see around 100 patients in a session. Of course this is also frequently reported in services provided in the UK by the NHS or in Veterans Hospitals in the USA. But in these western services the allied health professional such as the nurse is an important part of the delivery of care and patient education. The absence of a “skin care” nurse who can educate the patient about the doctors instructions or the potential side effects of treatment, necessarily impacts upon concordance, and the absence of this facility in India is a striking omission. It has been lost for leprosy in some districts since services changed from the vertical to the horizontal.
Government provisions for those that have been made destitute are even more scarce despite President Abdul Kalam’s emphasis upon the need for ‘Rehabilitation with Compassion.” 23
It is our belief that elimination of leprosy programmes do not effectively transfer into general health services for the very obvious reason that these services are desperately over-stretched, understaffed and by being general, are overloaded by the expectation that they will take on all aspects of health care. Indeed one of us (TJR) currently examining the curriculum for a skin care programme for 1,000,000 village doctors in China has recognized that countries like China and India with huge populations are constrained by such numbers and the time available for teaching in general health services, about an uncommon disease like leprosy, is unlikely to exceed 15 minutes in one year. Posters pamphlets, media such as radio and TV as well as the advances in information technology have to be recruited. Anyone in the UK who has expected to take into a school yet another health intervention will know that everywhere there is information overload. The people of India suffer from this as much as any other nation. New approaches to maintaining the memory of leprosy in the government health services of India are needed. The Government expects and waits to receive good advice from the profession that knows most about the skin.
The Private Sector: Dermatology Has Great Skills But Being Urban Based It Is Also Unenthusiastic About Rural Public Health
Dermatology has the capacity and skill to play a leading role in India’s battle against leprosy. There are about 4000 members of the Indian Association of Dermatology, Venereology and Leprosy, which adopted leprosy as a key component in 1973. Their curriculum for training, their exam, their membership of their association and their journal all indicate that they are well qualified in the field of leprosy. There are an uncertain number of lesser-qualified diplomatists, but a figure of 6000 has been suggested. Indeed the vast majority of dermatologists are in the private sector with academics and government appointments to government hospitals (1-3 per 475 districts), to the armed services or national organisations such as the railways or mining industry accounting for little more than 1000. A feature of those trained as dermatologists is that when their diagnostic skills fail them they usually take a biopsy. Even in London 24 this has allowed the fading memory of leprosy to be less of a problem in a dermatology clinic, because, even if the skin lesion is unrecognised, the presence of a granuloma in a histopathological specimen rings appropriate bells.
At the individual level, dermatologists are playing an active part in the treatment of leprosy. Private practitioners are trusted and many offer free or concession rates for the poor. They mostly can offer consultations with no one else around, a degree of privacy rare in government services. As a result, they are well used by all strata of society and they well know that the look good feel good factor, unwelcomeness due to disfigurement and the prototype of stigma which is leprosy, require privacy not display. They have little involvement with the government services nor do they habitually refer their patients affected by leprosy to the Government services. Without so doing their patients do not receive MDT at no cost nor are they added to national statistics. This matters all the time targets are to be met. A dermatologist with a mainly middle class clientele in Kerala may see only 3 new cases in one year. A dermatologist with a busy clinic open to the poor in a state with a higher prevalence of leprosy may see 7 new cases in one session and averages 20 new patients in one week. Questioning several dermatologists in urban practices we were given a new case detection figure ranging from 2-20 per month. This is a substantial number of unrecorded new cases.
On the societal level, dermatology is not producing the leadership in the field of leprosy that is required, with more lucrative fields receiving greater support and co-ordination from the top. They are not producing the sort of visionaries that the government is looking for; rather, as one former president of the IADVL notes, they are waiting for the government to take the lead. The teaching and examination is still good but what is depressing is that there is no investment in encouraging the young to take up research into leprosy and a lecture on leprosy at the Annual Meeting of the IADVL is one way to empty the hall. Sadly this is also the case at international dermatology congresses and no funding agency sees as one of its roles the recruitment of the young into the field.
Hugh Cross (personal communication ) “There is an issue of stigma which causes the wider field to reject interventions that have been developed in leprosy. The stigma is different to that suffered by individuals. Health professionals, it is perceived, generally have a rather patronizing attitude towards any “expertise” that has been developed in leprosy, despite Paul Brand’s seminal work in the field. So much of what is now considered to have been developed in the treatment of problems secondary to diabetes, was actually developed initially by Brand, Price, Ross, Warren and others to aid leprosy affected people. There is some believe, intellectual snobbery that shuns the suggestion that anything good may have come out of primitive and basic interventions for “lepers”. “
As ever there are exceptions and with good leadership there can be satisfactory postgraduate activities as are stimulated by the Bombay Leprosy Project (supported by the German Leprosy Relief Association). It is rightly pioneering studies of migration into mega cities and the difficulties of identifying and tracking patients. There is cause for hope. Public health dermatology is attracting a few young dermatologists interested in epidemiology population health and telemedicine for rural areas. The IADVL should form a sub-specialty group to promote a programme of integrated medicine.
Part of the dialectic between government and private practice revolves around guidelines for the treatment of leprosy. The government has adopted the WHO standpoint. Many private practitioners, however, are not happy with the shortened MDT regimens. An abolition of targets, the guidelines for MDT encouraging more flexible prescribing less tied to targets, and recognition of just how well qualified is the dermatologist in India to take a flexible approach to leprosy, would help. There are some distinguished dermatologists, expert leprologists, who on retirement from their academic post in hospital practice at a relatively early age, are totally ignored as potential recruits in the governments elimination campaign of leprosy. Some of these are critical of government services for relying on procedure trained allied health professionals who have, as they perceive it, only a few hours given to their training. The Indian Association of Leprologists most recent national workshop on “the role of Dermatologists in leprosy eradication” was highly critical of fixed duration therapy.
Dermatology also does not appear to be engaging with practitioners of Indian systems of medicine. Many regard them as quacks or rivals, and those few Ayurvedic Practitioners who specialize in skin diseases are not encouraged to learn more by attending the Indian Association of Dermatology’s meetings. We have heard discussion of Ayurvedic practice for a specific skin disease prohibited by the Chairman of one Session at a National Conference. On the other hand we are aware that there are an increasing number of instances of active co-operation leading to mutual benefit.
Indian Systems of Medicine: An Untapped Resource
India has a population of over one billion. If harnessed correctly India’s manpower can become an asset. One such asset are the practitioners of Indian Systems of Medicine. These include Siddha, Unani and Ayurveda. The latter is the most popular. There are over 600,000 Ayurvedic practitioners having had 6 years training in up to 300 colleges or 26 universities. Almost 8000 students graduate per year. In addition, there are more than 6000 Ayurvedic pharmacies, with a lesser number from Siddha and Unani; 346 and 375 respectively. It is no surprise then, that worldwide India is the third largest user of traditional medicine.
Modern day Ayurveda shows many of the features of professionalism. Students are institutionally trained, it has a regulatory body, the Central Council of Indian Medicine, as well as trade unions. The National Integrated Medical Association (NIMA) has 10,000 members who have at one time obtained a basic degree named before 1978 “Bachelor of Integrated Medicine”(BAMS) indicating some knowledge of allopathic medicine and then it was changed to “Graduate of Ayurvedic Medicine and Surgery”. The colleges of Allopathic medicine never gave the former degree recognition as indicating knowledge justifying practice and prescribing of allopathic drugs. The other trade union, recognizing the degree of “Graduate of Ayurvedic Medicine and Surgery” is “The All Indian Graduates Association”, with 300,000 members. In some states Ayurvedic practitioners are entitled to prescribe allopathic medicine. They would like recognition of public health services as for family planning, TB and leprosy control to be remunerated in all States for all systems of medicine.
Ayurvedic physicians have a stronghold in the state of Kerala. They are most commonly seen as beneficial for chronic medical problems. The focus of ayurvedic practice is holistic. Skin lesions are not subject to analysis of shape, colour and depth to the extent of biomedical practice but are examined to indicate more general features such as heat or indolence and the quality of the pulse to diagnose imbalance (In Pitha, Kapha Dosha) is more likely to determine therapy than the number, morphology or sensory features of skin lesions or the palpation of nerves. However, it seems that those that have had further training, such as the 2 year post graduate diploma, are able to diagnose leprosy and do use biomedical skills. Those that do not may treat the patient for several months before referring to a dermatologist or to the government service. Because their therapies have general affects and may well be immunomodulatory, and there is increasing experience of treating HIV/AIDS with drugs claimed to influence CD4 counts, induce weight gain, diminish diarrhoea and oral candidiasis (Naimithika Rasayana) it is not surprising that improvements in the patient’s skin lesions of leprosy may be observed and lead to further delays in referral. Furthermore it is no surprise that some tuberculoid patches may resolve spontaneously. Traditional medicine is observation and experience based and identifies the type of person in which events occur, these may be the early signs of diseases diagnosable by biomedicine through pattern recognition, or the side effects of therapy which are predicted and treated sometimes before they are expected to occur. An entry on leprosy in the Ayurvedic Textbook "Madhava nidaana" does not encourage belief in the system by a biomedically-trained scientist, but in practice a practitioner's knowledge of biomedicine achieves a correct diagnosis.
"I do not see much leprosy, about 4-5 cases per year. It is a clinical diagnosis and I look for analgesic patches, the characteristic facies and neuralgia. I apply herbal medicines over a patch as well as oral herbs and honey. These help the balance of Dosha. I would refer to a Dermatologist after a course of treatment if the treatment had not worked."
Are Indian Systems of Medicine another invisible pool of new cases? Probably not, because the majority of such practitioners claim that if they do make the diagnosis of leprosy using biomedical techniques they will refer the patient to the government service for free MDT. Furthermore, those practitioners we questioned saw very few cases annually (“10 cases last year”) especially in Kerala.
Another effective and more practical means of enabling practitioners of Indian Systems of Medicine to diagnose leprosy is by training programmes. The Community Aid and Sponsorship programme (CASP) held a Traditional healers (“Vaidus”) conference as part of the CASP-PLAN Project in Pune in 1999. They did so because the traditional practitioners were recognized as non-threatening and better able to relate to the rural and tribal people. The Poorna Sukha Leprosy Project, run by the catholic NGO at Dindigul, Tamil Nadu provides short courses and has enabled local Ayurvedic practitioners to diagnose leprosy and refer to the government services for MDT.
On the whole, Ayurvedic practitioners are not averse to integration. NIMA is testament to this as is the fact that their curricula include such texts as Davidson’s Textbook of Medicine and Gray’s Anatomy. One of us (TJR) has encouraged careful evaluation of self help and low technology integrated methods for treating lymphoedema in India. 25 51.8 million have lymphatic filariasis, with lymphoedema occurring in 7.44 million. The use in a research setting of Yoga and Ayurvedic skin preparations to stimulate lymphatic flow and restore barrier function to the skin has produced encouraging preliminary results. As such the benefits when transferred to general health services of such low cost, locally available and sustainable management for the morbidity control of this previously untreatable skin problem may be substantial. Perhaps this will be a model for integration for leprosy to imitate, where MDT may be provided alongside herbs for immune strengthening and natural oils for skin care. After all the theme of DANLEP’s “Hydro,Oleo Physio, Exercise” (HOPE) differs not at all from the practice of Ayurveda for skin care and what we are using in the integrated study now activated in Kerala at The Institute of Dermatology, Kasaragod, which is linked to The Cochrane Skin Group. It is now a programme that regards reactions in leprosy as eminently suitable for the “Evidence Based Medicine” study of potentially immunomodulatory regimens used by practitioners of Ayurveda. While overall the MDT initiative has reduced the prevalence of reactions, fixed dose regimens without long term supervision, as well as the lost memory of the disease are increasing delay in management . Furthermore it has to be admitted that the drug regimens for reactions are not ideal. The individual and holistic titration of therapy by Indian practitioners deserves more funding for measurement of what they are doing.
Indian Systems of Medicine penetrate deeper into rural areas than does biomedical practice, it is also cheaper to purchase and gives more time per consultation. Like biomedicine, Indian systems acknowledge poverty and the poor will pay substantially less for the care given to them. It is unfortunately the case that practitioners of Indian Systems of Medicine frequently have an extensive unqualified practice of allopathic medicine. In India, in spite of legislation to control prescribing, almost any drug, including opiods, steroids and antibiotics, are freely available for sale. While the routes into care are running in parallel it is difficult to envisage a change in the system. Integration might result in better education and a willingness to practice gold standards of care based on a unified approach to good practice. The governance of leprosy programming must cease to emphasise the failures of traditional medicine and do more to recognize its potential. 26
Non Governmental Organisations (NGOs): Some are Models of Effective Solutions
NGOs are traditionally seen as non profit charitable organizations that fill gaps in provision. The society for participatory research in Asia states that there are 1.2 million NGOs in India, but half are not registered. A study of 12,265 NGOs found 91% in the social sector, of which 52% were for rural development. Only 8.5% employ more than 10 paid staff members and 3416 have been blacklisted for poor accountability.
In India, NGOs have long played an active role in leprosy. The first known leprosarium in India was established in Calcutta in the early 19 th century followed by another in Varanasi. Pioneering NGOs include the Indian Council of the British Empire Leprosy Relief Association, established in 1925 and renamed Hind Kusht Nivaran Sangh in 1947, as well as the Gandhi Memorial Leprosy Foundation initiated in 1951 The financial contribution from industrial countries is large, and leprosy appeals still generate much sympathy, most of which comes from voluntary agencies and not governments. These contributions are subject to the foreign contributions act of 1976, amended in 1985. Currently, the number of NGOs engaged in leprosy work in India is diminishing from the 1991 estimate of 250. 27 The International Federation of Anti-Leprosy Associations (ILEP) has the task of co-coordinating the largest of the internationally most prestigious NGOs including the British Leprosy Relief Association(LEPRA) with its partner in India, Lepra India. LEPRA UK supports the Government of India with for example its “Blue Peter Laboratory” in Hyderabad and in 1989 agreed to provide considerable financial, logistic and technical support to 5 districts in 3 states of India.(Lepra India, Annual Report 1994) 28 Other ILEP members active in India are The Amici di Raoul Follereau Trust, The Leprosy Mission Trust India, The Netherlands Leprosy Relief-India, The Damien Foundation India Trust, and The German Leprosy Relief Association India.
Coordination is a difficult task. As the focus of elimination increasingly becomes directed towards fewer countries, the luxury of being able to geographically divide responsibility is no longer available. The result is that duplication of objectives is common. Many NGOs, including those from the same religious denomination, are unaware of the other’s existence. Hence, in a country where the poor travel only short distances, each NGO is an island in itself.
Based on our visits to mainly Catholic NGOs on this occasion and on past experience of visiting or enquiring about NGOs from other denominations we suggest that not all NGOs are showing a modern integrated outlook towards the changing face of leprosy.
Overt religiosity of NGOs with a prime mission to convert, appears to be a barrier between government and NGO cooperation. Indeed government guidelines expressly decline funding for overtly religious NGOs but only some religious NGOs have taken note, wearing Indian dress instead of a nuns’ habit, and diminishing the size of evangelistic symbolism. However, successful integration can be observed as at the Holy Family Hansenorium, Fatima Nagar near Trichi, Tamil Nadu, that provides a tertiary referral service for reconstructive surgery and rehabilitation fully integrated with government services, or the nearby Poorna Sukha Leprosy Project, Dindigul, having a significant teaching role for the many government primary health workers.
Documents on the government’s perception of the role of NGOs state that their main responsibility is capacity building in the prevention of impairments and deformity. It is abundantly clear that the disease leprosy can still lead to destitution and it is the religious NGOs who are best at caring for the destitute. Indeed the love they give as well as the strength of the belief in salvation is a wonderful alternative to destitution. However such love is not a substitute for the self-esteem of independence and income generation by those who are capable. A compound in which the majority are carrying out income generating activities is better than a ward filled with persons unwilling rather than unable to leave their beds. We observed that NGOs with the greatest evangelical spirit had the lesser income generating activities, no contact with government services, and a greater dependence on charitable donations.
Whether the NGOs provide another invisible pool of new case detection of significant size is questionable. Some we interviewed will not refer patients to government services and purchase MDT themselves so as to provide it free to patients.
One NGO with considerable experience and reputation for managing leprosy will provide the local government with details of patients that live locally. Patients traveling from further afield are given one month’s supply of MDT and told to make contact with their local government service. There is no attempt to follow up whether they do so. There has also been qualitative field work that is a reminder that patients once diagnosed and given therapy may delay or never accept the programme of care suggested. (Nicholls et al) There is good reason for them to delay accepting the diagnosis when there is published evidence of significant overdiagnosis.
Another problem that the NGOs, in particular, are facing is the expansion of their mandates to include TB and HIV. This is a result of both the rising burden of TB and HIV/AIDS as well as economic pressure. Yet, the adjoining of multiple vertical programmes is not integration and as with other attempts to provide general health services, there are difficulties in quality control.
India is at the forefront of advances in communication systems and concepts such as “Every Village a Knowledge Centre”. It is the ambition of the MS Swaminathan Research Foundation to provide torchbearers of a knowledge revolution in 600,000 villages. One should remember a previous slogan used to flag up the objectives of the campaign to eliminate leprosy, “Reaching every patient in every village.” Having the objective to bring skin health to all, in the training of one million Village Doctors in China, The International Foundation for Dermatology seeks partners and finance to disseminate some of the basic tenets of skin hygiene that will be beneficial to the health of populations affected by AIDS, other STDs, leprosy, diabetic foot ulcers, pressure ulcers, tropical ulcers and many other causes of disablement . The remedies are self help at low cost and should be common knowledge in every village.
Nursing: It Should Be In The Forefront of Public Health Skin Care Provision
Nursing in India is not as advanced as in the UK, Australia and the USA. Not only are nurses a smaller profession numerically than the medical profession but the expectations of a nurses role have not yet become dependent on the qualifications at entry and the quest of some intellectual pursuit by those with the higher levels of education. World wide a young person with the equivalent of “A” levels recruited to the complex training required to fulfil the needs of, for example, an intensive care unit, is not satisfied by routine patient care unless it is made more intellectually stimulating or there is there is a free reign in the delivery of patient instruction.
The experience in the UK of a nurse that has the same academic ambitions and the same zest for overseas experience as the “medic”, led in dermatology to a much-changed scenario. It included the nurse who can prescribe, the Nurse Consultant, The British Dermatological Nursing Group and the International Skin Care Nursing group affiliated to the International Council of Nurses and in some cases working overseas in the field of lymphatic filariasis. It is a group that has a broad view of the role of skin care, encompassing wound healing and tropical medicine. It has therefore contributed to the ancient provinces of nursing such as management of pressure ulcers and leg ulcers but also the neuropathic ulcer of the leprosy foot and increasingly of the diabetic foot, and the lymphoedema of lymphatic filariasis. In dermatology the nurse is capable of managing and especially of instructing the patient about common infective diseases such as impetigo, fungus infections and scabies as well as the impairments of quality of life in children and adults such as atopic eczema and psoriasis. 29
The International Foundation of Dermatology has focussed on the training of allied health professionals and on the management of common skin diseases that prevail in primary health care. It has concluded that the allied health professional in the health centre can diagnose and manage common disease if well taught and a consequence is poverty alleviation by eliminating ineffective prescribing. It has also noted that the prevalence of disease will not fall as a consequence of such teaching unless the health centre attracts its community through its doors.
In all these respects our observation in India of a few small health centres serving tribal communities, run by NGOs which work closely with the government Ministry of Tribal Affairs, impresses us with the fact that the nurse in these clinics correctly diagnoses common disease, is supported by the visiting doctor and might well benefit from a specialist in Indian systems of medicine as a colleague. Further more linking small units with beds to a crèche where mothers visit on a daily basis is a certain way to make the complex of dispensary and beds more patient friendly. We suppose the early case of leprosy, reactions and ulceration would all be adequately managed in such clinics.
We understand that a proposal has been forwarded to the Minister of Health for a novel strategy for primary care that involves developing health centres manned by a nurse and an Ayurvedic physician referring to a community centre staffed by doctors. This solution seems apt for India’s needs.
In this review we have emphasised new case detection and MDT. In India every city has visible evidence in its beggars that the consequences of leprosy are quantitatively and qualitatively excessive. The government services cannot provide a comprehensive service and the many religious NGOs have shouldered the load. However much of the management of disability falls under the heading of wound care. The neuropathic foot is now an increasing problem and like other chronic wounds, pressure ulcers, or leg ulcers, it is the nurse in Europe, Australia and the USA that has taken up the challenge of care. Not yet is this so in India. One of us (TJR) has supported the, new to India, discipline of Wound Healing but in Asia nurses are not yet welcome at the same high table as the surgical and medical members of the wound healing team.
Fortunately the Indian Association of Dermatology has permitted the inauguration of the Indian branch of the International Skin Care Nursing Group (ISNG) initially at its 2003 meeting in Bombay. It was enthusiastically attended by some 300 nurses. In 2004 in New Delhi it was a hundred dermatologists that showed enthusiasm. Dr Vineet Kaur who is the representative of ISNG in India had been involved in the UK in assessing the evolving role of the Dermatology Nurse in the Community. She was also the author of a study of the value of teaching Traditional Healers Kaur et 1984. In her introduction at the 2004 conference, she emphasized the difficulty of many patients in taking in the instructions verbally given by dermatologists. Furthermore with respect to the important message of skin hygiene the dermatologist is an unpracticed instructor of the details of the low technology required. The dermatology nurse does not exist in outpatients, on the ward or in the Community. The skills of self help that in the UK are transferred to the patient via the nurse are lacking. On the ward, maybe the general nurse is perceived as doing an adequate job, but this is much less than the skills used by a dermatology nurse in the UK. 29 In the community the nurse can manage common disease and counteract myths about causation and make the disfigured accepted by the community. Dr Kaur recognises that the needs in India “are vastly different and so the nurses role too will have to be tailored accordingly.”
Amongst several suggestions was the comment that the role of the allied health professional in skin care was not new in India because it had long been practiced in the armed forces. Also in India there once was a cadre of health workers known as Registered Medical Practitioners. They are still registered as village health workers in deprived areas such as Bihar but have little institutional training. Their value is that they have local community understanding and have played a useful role in community medicine. They are still registered as village health workers in deprived areas such as Bihar but have little institutional training. Their value is that they have local community understanding and have played a useful role in community medicine. Thus an example reported in The Damian Foundation 's "Update" in January 2005 describes one such worker contributing to a TB programme as a "Pillar of the Health Service". Their acceptance was largely because of their familiarity with the culture of the communities in which they serve. In our experience in several nations this is so too, for the well trained and appropriately located nurse.
Rural Needs and Skin Camps: Diagnosis Without Management
75-80% of India’s population are in rural areas. Numerous tribal languages, illiteracy, water shortage and poor roads and communications hamper health care. Health camps in general, and skin camps in particular, are an established method in India for providing health care to rural populations. A skin camp that runs for a day, with sometimes only one doctor, may see 200-500 patients.
The efficacy of such camps is questionable. Time constraints and the lack of follow up make optimum management of most dermatological diseases impossible. They are perpetuating undesirably rapid management of patients quite out of keeping with modern dermatologic practice. However, it does seem to be a good method for detecting untreated cases of leprosy. Out of 200 patients at the Vidyapeeth skin camp, we saw four new cases of leprosy. These patients were told to seek MDT from the government services. But exactly how the patient’s dislike of so doing was managed was invisible to us. Like Leprosy Elimination Campaigns (LEC) the practice of directing patients to special leprosy centres “supports the misconception that leprosy is a disease apart from other diseases…..” 30
We discussed such camps with an Ayurvedic Physician in Kerala. He was involved with these monthly and had concluded that they were without benefit to patients because no time was given to instruction. It is time-giving that most distinguishes the defects of biomedical practice when compared to traditional medicine, so it was no surprise that an Ayurvedic physician had decided that the only way to make the camps more effective was to train nurses in support. He had set up a training scheme for this purpose.
Integrated Medicine: Giving Access to All
Leprosy remains a major public health problem in India and will likely remain so for decades to come. As we have seen there are a variety of actors in this drama; each is facing their own problems, and far from partnership, they currently see each other’s failures. The patient with leprosy has a choice to take one or more of several routes to care. They include government services, the private sector and dermatologists. They can visit several other systems of medicine including Ayurveda, Siddha and Unani. Some may go for homeopathy. There is also the route to NGOs which are often overtly religious and of questionable acceptance at locations where other religions are dominant. But there is no doubt about their value to the destitute and they are frequently the flagship of state prevention of deformity, reconstructive surgery and rehabilitation. There is a great need for integration, bringing together the many actors, and providing an equitable service with access for all.
Proposals for Leprosy in the General Health Services
Nurses are the educators and caretakers of low technology procedures for managing skin disease. At lower cost than physicians and surgeons they should be at the forefront of the management of common skin disease and located at the health centre often in partnership with a practitioner of Indian Systems of Medicine; a proposal that is already under consideration . A report in the Damian Foundation India Trust "Update" describes one such model in January 2005, that is working well for leprosy. "The Municipal Health Centre which has been involved only in Maternity and Child Health programmes has shown that with proper guidance it can accept the responsibility of NLEP and help in the integration of Leprosy Services in the general health set up " One of us (YBA) visited The Poorna Sukha Leprosy Project of St Joseph's Hospital Dindigul, Tamil Nadu, therein described. Health centers employ 5-6 nurses and two medical officers one of which may be from Indian systems of medicine. In this area he may well be a Siddha practitioner. One nurse may oversee a population of 5000. Patients with leprosy report early and detection rates are high. Disability rates are low and this large private hospital has a need for only 8 beds for leprosy with less than 50% occupancy. It is a catholic hospital well integrated with government services. In the same issue of "Update" there is a report of a team of 9 nurses backed up with one doctor covering a population of 49,000 in a primary health centre "making a difference" in the Trichy district.
- The Indian Association of Dermatology Venereology and Leprosy should set up a section on Public Health Dermatology to support those young dermatologists interested in epidemiology and community medicine inclusive of the gold standard for early diagnosis of leprosy and its management. No other discipline knows the skin so well, understands the look good feel good factor and is so concerned with wound healing. Only this profession can make the expertise needed for one disease sharable in the management of other skin diseases.(31,32) They need to take the initiative to help advise the government towards an integrated approach as well as co-coordinating within themselves their approach to leprosy. Investment in experts among the younger generation of dermatologists is urgently needed and should be linked to research, both into the unknowns that characterize this disease but also into health service organisation. Dermatology’s textbooks and International congresses must continue to promote gold standards in diagnosis and management. But the aim to make all dermatologists expert in this field should give way to maintaining a small core of dermatologists practicing gold standards and giving a lead to the allied health professionals undertaking leprosy control.
- In turn, dermatology should receive the requisite advocacy for a job it has already begun, and in the disguise of many distinguished leprologists has proven to be effective. 31, 32 Such rewards and awards are a society’s way of ensuring important activities take place at no added cost.
- Communication between the different parties needs to be established. at both the top and the bottom. This should initially be quarterly and should involve the heads of NLEP, ILEP, IADVL and the Ayurvedic trade unions or colleges.
- Guidelines on how to take leprosy into general health services should focus on cheap and effective education programmes, especially recognising overload. These should not be unilateral. They should focus on procedures that are generalisable i.e. management of common skin disease in a framework that picks up rarer diseases and is as effective for the prevention and management of the ulcerated diabetic foot as it is for leprosy. We do not advise a full package of information about any one disease to be forced upon the general health services. However, for example, a comprehensive knowledge of how to wash and apply emollients to as important a barrier to infection as the skin, can be of benefit to the diabetic foot, the bedridden elderly, the lymphoedema of filariasis or cancer, the skin breakdown in HIV/AIDS as well as to common skin disease and to leprosy. Stigma is a feature of all disfigurement and to be unwelcome because of ones appearance is one of the commonest presentations of skin failure. To focus only on one disease is negligent because it utilizes funding that could benefit at one and the same time common problems rather than rareities.
- The Indian Government needs to work towards standardizing health care infrastructure and making such practice uniform throughout states. By standardization, variation in method is not negated, as needs will vary; rather standardization should be conducted with regards to a developed, manned, infrastructure for effective and accessible primary health. The lack of awareness in India of individual practitioners or units that others with the same objectives exist was a recurring theme of our survey. It may have something to do with the autonomy of the states.
- Greater research is needed into Indian systems of Medicine. This will help provide credibility to a resource efficient method of sought after medicine; aiding the process of integration.
- NGOs need to ensure greater cooperation between themselves and other health care providers. A concerted effort needs to be made at generating funds without the need for adopting other parallel campaigns. Leprosy still needs a vertical programme at the top and diluting it with campaigns to control TB or HIV/AIDs will overwhelm it.
- More NGOs need to adapt to the changing face of leprosy in India. Their role in filling gaps in provision requires a move away from the traditional leprosarium towards the development of education programmes, tertiary referral services or even research. Their passionate belief systems may be helpful to the destitute but require tact if they are to be integrated into local communities.
- The abolition of targets would be welcome. They are inaccurate and achieving them is an expensive irritation for diverse practitioners who, realize more openly than NLEP that there are many unrecorded cases of leprosy seen in the Private Sector, and by Indian Systems of Medicine , by NGOs and lost in the Mega cities and in migrating populations.
The authors of this article wish to thank LEPRA and the St Francis Leprosy Guild for their generous contributions towards the expenses of YBA in this study. Dr Colin Macdougal has made many helpful comments. Further, the authors also wish to thank all those who gave their time to be interviewed.
1) Senior Scientists
- Professor Ranjit Roy Chaudury, Chairman, Commission on Macroeconomics and Health, Ministry of Health and Family welfare, Government of India, New Delhi.
- Dr Nandini Kumar, Deputy Director General Basic Sciences, Indian Council for Medical Research
- Dr Kamalakshan Kokkal. Principal Scientific Officer. Kerala State
- Dr Derek Lobo, WHORegional Advisor on Leprosy Elimination .Lecture to 2005 Annual Meeting of The Association of Dermatology Venereology and Leprosy
- Dr Narasimbha Rao Lecture to 2005 Annual Meeting of The Association of Dermatology Venereology and Leprosy
- Dr N Mehhrotha Principal Scientist. Central Drug Research Institute, Lucknow
- Dr R K Shenoy, Chief of Filariasis Chemotherapy Unit, TD Medical College Hospital. Allapuzha.
- TK Manoj Kumar IAS Deputy Director, Lai Bahadur Shasthry Academy of Administration, Musoorie
- Dr Ali Kumar Community Agro Biodiversity Centre MS Swaminathan Foundation Kalpetta.
2) Dermatologists With a Special Interest in Leprosy
- Professor R Ganapati Director of Bombay Leprosy Project
- Professor Gurmohan Singh, FRCP Edinburgh,.Dermatology Venereology and Leprosy consultant at Banaras Hindu University. One time WHO Consultant
- Professor Bhushan Kumar Dermatology Venereology and Leprosy Consultant Chandigar N India
- Professor B K Girdhar, Deputy Director Central JALMA Institute for Leprosy, Indian Council for Medical Research Agra.
- Dr Vineet Kaur, Indian Representative “International Skin Care Nursing Group” affiliated to the International Council of Nurses.
- Dr Sugathan, Dermatologist Venereologist and Leprologist Calicut
- Professor DM Thappa ,Pondicherry
- Dr SR Narahari, Institute of Applied Dermatology, Member of Cochrane Skin group
- Dr H Girgla, Past Commonwealth Fellow, Dermatologist ,Venereologist and Leprologist New Delhi
- Dr Tom Oomen, Asian Editor for BMJ, Pharmacologist, Mangalore.
3) Ayuvedic Practitioners
- Dr Shrkumar Alvas Ayurvedic College, Moodabidri, Karnataka.
- Dr Shailander Dhawan, general secretary of “All Indian Medicine Graduate Association”
- Dr Sreekrishan, VPSV Ayurveda College Kottaka,i Secretary of “National Integration Medical Association”
- Dr Pradeep Kumar, Member Secretary Institutional Ethics Committee of Institute of Dermatology, Kasargod and Founder Member of “Forum for Ethical Review Committee in India”
- Dr Sunil K Mishra, Madhuri Clinic, Varanasi
4) NGO’s visited concerned with Tribal Communities
- Nilgiris Adivasi Welfare Association (NAWA), Kotagiris, Tamil Nadu
- Eco Agri Research Foundation (EARF), Ketty Post, Nilgiris, Tamil Nadu
- Mengal Bharati Vidyapeeth (Village University), Vadodara, Gujarat
- Dr Tarun Chhabra, dental surgeon, Toda Tribe Expert, Nilgiris
5) NGO for Chennai Slums
Don Bosco Beatitudes Social Welfare Rehabilitation
6) NGOs for LEPROSY supported by the St Francis Leprosy Guild
- St Joseph’s Leprosy Hospital, Mangalore, Karnataka
- Green Gardens, Chertala, Kerala
- Holy Family Hansenorium, Fathmanagar, Tiruchirapalli, Tamil Nadu,
- Sacred Heart Leprosy Centre, Kumbakonam, Tamil Nadu
- St Rock’s Dispensary, Puduthurai, Karaikal, Tamil Nadu.(Pondicherry prefecture)
- Poorna Sukha Leprosy Project, St Joseph’s Hospital Dindigul, Tamil Nadu
- St Joseph’s Hospital, Tuticorin, Tamil Nadu
- The Popes Garden, Leprosy Hospital, Don Bosco Beatitudes, Vysipardi, Chennai, Tamil Nadu.
- Kasturba Villupurum,Tamil Nadu
- Nalgonda Leprosy HealthCentre Andrha Pradesh
- NehruYuvajana seva Sangham Tamil Nadu
Conducted at Mengal Bharati Vidyapeeth, Gujarat by Dr Shyam Verma (Vadodara), Professor Terence Ryan (Oxford), Professor Rodney Sinclair (Melbourne)
Additional Reading Matter
Group discussion held at Chennai by State Level Officers to determine Norms and Conditions for NGOs Providing Leprosy Services and especially “Roles/Responsibilities of NGOs in the context of Leprosy elimination and Integration in General Health Care System”.
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Integrated Health Care*
1) A continuum of care to ensure patients are treated at the most appropriate level of care and their journey through the system is as rapid and efficient as possible.
2) All specialities, including primary care, are equal members of a multi-speciality team and jointly control financial resources.
3) All parties in the system are jointly responsible for ensuring that available resources are spent most effectively to achieve health care outcomes.
4) Leadership and management collaborate to ensure partnership between clinical governance and administration in achieving shared goals.
5) Integration of culture and vision within a single organizational structure dedicated to providing high quality cost effective care.
* adapted from Feacham and Sekhri (2005)