It is difficult to distil one’s experience, travelling as hand surgeon to India and Nepal to work and teach in various leprosy hospitals. Biannual visits over a period of 12 years translates, in rough calculation, into some 1000 patients treated. Behind each hand reanimated, each contracted burn scar relaxed, each joint stabilised, are dependants, lives altered in some small or large way. A person barely able to support his family, his hands paralysed, is now able to hope and to consider some security for himself and those around him. This in an environment where welfare help, health systems and general support are meagre, unreliable, unaffordable or unheard of.
The patients one treats carry the effects of leprosy, paralysis in the hands, and various other stigmata. They are summoned weeks in advance, to attend the hospital for our visit – ‘Dr Donald is coming’ – and they come. Sometimes walking for days, sometimes from the next village down the road, or even those who work in the hospital, staff, the leprosy afflicted caring for others in the same condition. Those who travel distances are given shelter and food, waiting their turn, and staying on for the early splinting and physiotherapy, which must follow surgery.
It is humbling to see these destitute people travelling distances to meet me, in the hope of a better life. This alone is an expression of faith and the expectation of something better than their lot. They are given brief outline of what is planned (I have no control over what is translated) and willingly lie down and have me operate on their hands. This too is breathtaking faith and trust, which is always striking. This is true of all surgery – the surgeon is entrusted with so much – but is even more striking when there is no direct thread of communication, no understanding between patient and physician.
And they then leave the operating table, back to sparsely equipped wards, stay a few days while their rehabilitation is started and disappear back to their villages. In many cases we do not meet again since the hand therapy will happen after I am gone. We may meet ona future visit, especially if they re-appear for surgery to the other hand. There is an appealing arbitrariness, a serendipity, in this encounter, which changes both individuals involved, patient and surgeon, but whose lives will not cross again.
This direct help, to each individual, is not the main benefit of these visits. It is the teaching of the local surgeons that matters far more. Each two week visit achieves, at best, some 50 operations. Each of these is valuable of course, a significant change in one life, but a very small bucket of water on very parched ground, when mass irrigation is what is needed. This is the value of teaching local surgeons, principles, techniques, good practice. It is moving, and affirming of the reason we do this work, to watch and assist the local surgeons as they perform surgery I have taught, or for me to review the good results they have obtained. Even as my plane takes off to return me, and my team, home, these same surgeons are operating. The effect of this, and previous visits, continues, throughout the year, and as long as they themselves work. They too, will teach the next wave, the surgeons who join them. Their patients will be, in some small way, my patients, their students also mine.
None of this work would be possible without help – I am simply the effective front of a team effort. Junior surgeons give up their free time here in England, to accompany me, contribute and learn – in time they too might start similar projects. Many, like the airline Etihad, give with astonishing generosity, amply and without fuss – the flights which have been provided free, defray the biggest expense. This aspect always amazes me, and is humbling, spurring my team on to make maximum use of what has been given. One has a deep sense of privilege at being part of this work – it is our good fortune to have this opportunity to help such obvious need.
The bigger picture, the containment and eradication of leprosy, is complex, a battle fought on many levels, political, social, medical (some countries claim ‘elimination’ of leprosy when the evidence of one’s eyes in the field is entirely to the contrary).
It is tragic that many who present with active disease and paralysis, are treated, and are no longer infected, but the paralysis remains. These individuals find themselves on no statistical charts. On all leprosy programmes they are ‘Cured’, and they fall out of the reckoning. But their disability is profound and permanent. There is no diagnosis named Cured-of-leprosy-but-still-paralysed. It is this group of patients that our surgical work targets.
There is still stigma attached to the disease particularly since its effects are distinctive and difficult to hide. Over centuries the dilemma has been one between segregation and treatment in the community. Segregation is little short of incarceration – the words ‘Leper Colony’ still carry a frightening connotation – the prospect of leaving family encourages concealment and further spread of infection. Treatment in the community encourages patients to come forward but leaves many in contact with others, to pass on the disease.
It is also relevant that these conditions do not affect developed and affluent countries – to our shame, they therefore figure small on our horizons. Much is yet to be achieved, especially in the direction of education and the removal of stigma.
Beneath the politics, the jostling for position, the organisations, it ultimately reduces to the simple equation – one has something to give, and these are people who need to receive. All else exists simply to make this possible and effective.
© Donald Sammut, 2012