An editorial in the Journal of Cleft Lip and Craniofacial Anomalies by the CEO was recently published
An editorial in the Journal of Cleft Lip and Craniofacial Anomalies by the CEO was recently published. It is part of a series to promote NGOs working on the sub-continent. Hopefully is will promote the work of Future Faces amongst a wide range of professionals and other interested parties. It is ‘open source’. Feel free to share it. Copy and paste the link:
or read it here
|MISSION IMPOSSIBLE MADE POSSIBLE|
Managing cleft lip and palate: The way forward
Anthony F Markus
Department of Maxillofacial Surgery, Nuffield Hospital, Bournemouth, BH1 4RW, United Kingdom
|Date of Web Publication||17-Aug-2015|
Source of Support: None, Conflict of Interest: None
|How to cite this article:
Markus AF. Managing cleft lip and palate: The way forward. J Cleft Lip Palate Craniofac Anomal 2015;2:89-91
|How to cite this URL:
Markus AF. Managing cleft lip and palate: The way forward. J Cleft Lip Palate Craniofac Anomal [serial online] 2015 [cited 2015 Aug 21];2:89-91. Available from: http://www.jclpca.org/text.asp?2015/2/2/89/162960
Cleft lip and palate has become an increasingly hot topic over the last 20 years, not just in India, where with the advent of significant funding streams, from organizations like smile train, there has been a massive increase in service provision, but also in the developed Western Societies where it has been widely perceived that standards of care, in many areas, were and possibly still are, unacceptable, being either inequitable or having poor outcomes. Much of this awareness has been driven by globalization, which has resulted in rapid economic integration between countries by removing obstacles to the global movement of capital and the production of goods and services. This has been facilitated by improved IT and communication. Driven by unprecedented levels of wealth and the creation of many jobs, the sub-continent being no exception, poverty levels have reduced in certain sectors of society, though there is an ever-widening gap between the rich and poor countries low and middle-income countries (LMICs) and between the rich and the poor people.
In India, cleft lip is still regarded by many as a cosmetic problem. Clefts represent a major impact on appearance, speech and hearing, psychological well-being, and communal integration. The deformity also represents long-term consequences both for the affected individual of an emotional and cultural nature as well as a burden of care for the family and the state, where the tensions of the economic status of a particular region are often at odds with cultural beliefs. Despite poverty, the rise in accessible communications has produced a society increasingly obsessed by appearance, an obsession that represents a challenge for the disfigured, in particular for those with compromised facial appearance, and demands for solutions that will meet ever increasingly higher expectations of a culture driven by opportunities for wealth and success. Craniofacial anomalies are drawn into this equation in as much as there is an increasing desire for patients and their families, not unreasonably, to continue their search for treatments that will eradicate all stigma of the anomalies. With an estimated population of 1.1 billion in India and an estimated 24 million births per year, there are roughly 30,000 children born with clefts each year. Inequalities of access to care and quality of cleft care with distinct differences in urban versus rural areas and accumulation over the years of unrepaired clefts make this a significant healthcare problem in India. Serious acknowledgment by organizations such as the World Health Organization (WHO), works through many non-government and charitable organisations and interest by politicians is not only required, but must be stimulated and sustained.
|The Burden of Disease|
The Lancet Commission on Global Surgery  identified 5 billion people, largely the poor, marginalized and rural, who face impossible hurdles in accessing surgery worldwide and for all practical purposes are excluded from what is often life-saving or disability-averting treatment. It was found that about 30% of the global burden of disease could be surgical. In a study of major surgery in South India  in the states of Telangana and Andhra Pradesh, a population socioeconomically representative of India and other LMICs, despite near universal access for major surgery, continues to remain low. This indicates that for optimum care of these children, strategies beyond traditional financing are required. As a measure of economic value, disability adjusted life years (DALYs) is a useful tool for quantifying the burden of disease. One DALY can be thought of as one lost year of “healthy” life.  The sum of these DALYs across the population, or the burden of disease, can be thought of as a measurement of the gap between current health status and an ideal health situation where the entire population lives to an advanced age, free of disease and disability.
|Management of Clefts|
The major issue currently faced by those involved in the management of cleft and craniofacial anomalies, whether in Western industrialized nations or in countries with less well-developed healthcare systems are the same. They include the ability to plan and provide local, effective, accessible and equitable care, and to determine and address the burden of care for the affected individual, their families and their employers within the context of the individual culture, not forgetting the potential socioeconomic burden for the state. Cost effectiveness is essential if the gap between the costs of providing a service and developing effective management strategies, whether medical or organizational, are to be bridged. While surgical services, for example, might be funded, it is the responsibility of the donor organization and user to ensure that those funds are used effectively. It is the responsibility of the users, for example, the surgeons, should adopt a method of surgery that will produce the best outcome with minimal need for cost, further revisionary or secondary surgical procedures. Therefore, it must be the principal aim of the cleft surgeon to restore the deformed and displaced regional anatomy to as close to normality as possible, whether or not there exists true hypoplasia. Primary surgical methods encompassing these ideals should theoretically reduce the frequently observed sequelae of the both cleft deformity itself and the surgery and so, in turn, the need for secondary surgery. In reality, even in the most favorable circumstances, secondary surgery will be required. National guidelines and recommendations for effective, economical, and equitable treatment need to be provided, and those which are ineffective or unproven should remain under close review. This may be linked by some to rationing but in a world of rapidly increasing technological advances and competing financial interests, it is necessary and reasonable. These principles will need to be applied if treatment is to be of the highest standards and people’s expectations are to be met. Where the competition for funds on reduced or reducing budgets represents an even greater problem. Identification of those surgical methods that are effective is essential.
Future Faces (www.futurefaces.org.uk) developed out of a perceived need to support the training and development of all healthcare professionals involved in caring for people of all ages with a cleft so that they can deliver the best outcomes thereby changing the future of the otherwise disadvantaged. By supporting and funding an integrated infrastructure, families and healthcare professionals are able to cooperatively deliver the best care, from the initial diagnosis through to postsurgery speech therapy and beyond.
Our projects are divided between developing training and infrastructure for healthcare professionals based on an understanding of local circumstance and culture, working as a partnership for as long as needed. Proper surgical training is an absolute requirement. At the same time, there is a need of coordinated educational programs. Education needs to be focused on basic health matters within the individual culture, and prevention of disease, which with improved diagnostic facilities and treatment, will ultimately impact on craniofacial disease. Therefore, it is essential for trainee surgeons to learn techniques that will achieve the best outcomes.
Future Faces funds cleft surgical training fellowships for all levels of expertise, whether the beginner or the more experienced trainee. These opportunities are made available at the GSR Hospital in Hyderabad where the fellows, from all parts of the world, but significantly from India, can participate in a structured training program in a center of proven high quality and with access to a high volume of patients. This center, acting as a tertiary referral center, also provides training opportunities for speech therapists, both in the hospital setting as well as in the wider community. Currently, there is a project funded by Future Faces for the management of postsurgical follow-up in the community by a senior speech therapist, and for the on-going speech therapy to be delivered by community health therapists with training from and guidance by the center through electronic means.
Future Faces also funds programs to train parent community health workers to deliver educational material concerning clefts, the primary focus being to promote an understanding of cleft conditions and their cause, nutritional information for both mother and child, and methods of feeding.
Continued research is not only required to determine the nature and extent of the problem but also the best methods for dealing with it. This research needs to be coordinated, and the work of the International Collaboration on Craniofacial Anomalies sponsored by the WHO is of great importance.  Indeed, in 2008, the WHO recognized that noncommunicable diseases, including birth defects cause significant infant mortality and childhood morbidity and so included cleft lip and palate in their global burden of disease initiative. Future Faces is committed to build upon the substantial research already collected over many years. The rural, effective, accessible, and comprehensive healthcare project  was an early program based in Hyderabad through which demographic and epidemiological information could be gathered from diverse rural communities about genealogy, diet, sanitation, and social structures, so helping healthcare professionals can understand what challenges they face and improve healthcare at local levels. Not only did it gather data for onward transmission to the center prior to any surgery but it also collected data for purposeful research, which could also be shared with national healthcare professionals so that they could better understand how to improve the delivery of service across the country. It is essential that research is supported and Future Faces funds study at various international centers so that local healthcare professionals can learn how to carry out effective research as well as publish in peer-reviewed journals.
Future Faces aims to improve the quality of life of cleft affected individuals by funding healthcare professionals to deliver an appropriate high standard of care. In the words of Jawaharlal Nehru, “if life opened its gates to them and offered them food and healthy conditions of living and education and opportunities of growth, how many among these millions would be eminent scientists, educationists, technicians, industrialists, writers, and artists helping to build a new India and a new world.”  This supports our aims in achieving sustainable high-quality care for people with clefts.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.