I met Oliver at the Galiwin’ku clinic and had kept in touch ever since. His approach to helping was rare and precious. Though thoughtful, he was no dreamer. Not a bleeding heart but nonetheless compassionate, not out to fix the ‘Aboriginal Problem’ or save people but unwilling to accept obvious disadvantage as the status quo.
And he had the most important asset for remote work—a stubborn determination to keep going. He needed it because despite having worked for years in communities helping to organise health promotion activities and advocating to fix broken taps, toilets and showers, Oliver’s commitment and passion was not fully recognised or appreciated. His managers in Darwin were happy as long as he didn’t create more work for them and many of his excellent ideas on scabies control, environmental health and mentoring community workers were never given the chance to be heard or tested.
Oliver kept going even through remote area work’s greatest sickness: lateral violence, the pointed and continuous sniping aimed at anyone who dared to think they could make a difference. He regularly helped health centres and communities across east Arnhem Land organise healthy skin days to reduce scabies and skin sores, an unappreciated but important job.
When we arrived in Nhulunbuy, Oliver was helping to organise a ‘healthy homes, healthy skin week’ in Yalambra, a 90-minute drive from Nhulunbuy on a red-dirt road.
The mining and regional services town of Nhulunbuy was located within driving distance of four Aboriginal communities—Yirrkala, Gunyangara, Barraka and Yalambra. Like nearby Yirrkala and most of the remote communities in the Northern Territory, Yalambra had been established by missionaries who enticed or coerced families from surrounding homelands to settle there. Getting involved in the Yalambra healthy skin day was a chance for me to meet Sarah, the clinic manager, and all of the community health workers. After more than ten months of research, preparation, negotiation and uncertainty, including six months of working in the Top End out of motel rooms, waiting for accommodation, it felt surreal to finally be living here.
I packed some food and headed down the corrugated Arnhem highway to Yalambra. But despite Oliver’s enthusiasm and energy, our ‘healthy homes, healthy skin week’ efforts were met with only half-hearted engagement from households. As the week wore on I found it hard to imagine that anybody applied the scabicide creams we were giving them, just as Graham had predicted.
The clinic manager, Sarah and the nurses had their own ideas. While they had offered support for the skin days, Sarah’s main interest in me was to get help with crusted scabies, a disease they had been struggling with for years. She handed me a list of a dozen or more households out of Yalambra’s eighty that she thought housed someone with the condition.
‘You are the scabies man so this is your problem now. We’ve tried everything and people keep getting sick so . . . good luck with it!’
She highlighted one particular child called Yinarri who was continuously sick with scabies and sores and who had been hospitalised twice with crusted scabies. His skin was in such a state that Yinarri had been pulled out of the supermarket and reported to the clinic by a concerned passing nurse. Yinarri stayed up at night crying from the pain of whole-body sores caused by continual itching and he had even received sedation to help him sleep. He was excluded from school for extended periods because of his infectious status and since it was such a visible skin condition he was also bullied relentlessly by his peers.
I read over his notes carefully. It seemed that this litany of suffering had started soon after birth and continued without a break for the entire ten years of his life. It was the abstract idea of a child like Yinarri that had drawn me to this place, this job, this moment. In my mind he took his place beside Jilory and Rhonda, the people I was creating a program for. I knew as I read that Yinarri would be my yardstick. His ability to enjoy a healthy life would tell me if we had succeeded or failed.
Graham’s words of advice rang in my ears, reminding me not to get caught up in acute care or I would be overwhelmed by the unmet need until I had no time to work on the scabies program. Besides, after six years of medical school and many years working in developing countries, like most doctors I had no real idea how crusted scabies presented clinically, or how to treat it effectively in an endemic environment.
That night I returned home in a deep funk.
‘Oh, Tan . . . How can I focus on an itch, which is all scabies is to most people, and forget all the other things affecting people? Like malnutrition—there are higher rates here than in some of the world’s most impoverished countries.
‘I feel like such a fraud. And to say I work with One Disease seems to just push everyone’s buttons at the clinic!’ I switched to a mocking voice: ‘If only I could work on just one disease and forget about the domestic violence, hearing loss, developmental delays, kidney disease, fetal alcohol syndrome and every other problem that walks in the door.’
Tanya had stopped whatever she was doing and now sat on the cool tile floor, her back against the wall. I had left that morning with a spring in my step and now I was despairing again.
‘. . . and these healthy skin days just get no traction. Nothing really changes so people must wonder what the point of them is . . . though Oliver reckons it was a success.’
The phone rang while I was talking—the clinic manager at Gurrumu had found accommodation for me for when Gurrumu was having its healthy homes week. I sounded confident and professional. Tanya watched me with a sad half-smile on her face. The constant doubts, the roller-coaster emotions and the hopeless anxiety she saw at home was a side of me nobody else could have imagined.
That night I slept badly and woke still worrying about Yinarri, the young boy at Yalambra.
I drove out after breakfast and asked Eva, a nurse who had grown up in Yalambra after her parents had moved there decades ago as teachers, if Yinarri and his carers would come to the clinic. Eva didn’t think they would so we decided to go and pay their house a visit. Yinarri’s mother was outside with her son, who was covered in wet, oozing sores, healing sores and old marks from sores that had finally healed but not quite vanished from his skin. Yinarri’s mother made no eye contact and refused to speak.
Eva motioned to a tent on the verandah and I glanced inside to see an old woman. The body language of Yinarri, his mother and the woman in the tent clearly said: just leave us alone.
So we did. Before we left, Eva approached the tent and spent a few minutes talking with the old woman before walking back to the clinic with me.
A few hours later, Rukula, the older woman who had been in the tent, and Yinarri arrived at the clinic and Eva made a cup of tea and brought out some of the bananas grown at a farm in the nearby community of Yirrkala.
I learned from Eva that Rukula had been a traditional healer in her community. The knowledge had been passed down to her from her mother but in recent years she had withdrawn from work and social relationships and rarely came out of her tent. Despite the sweltering heat, Rukula did not dress in the typical T-shirt, colourful long skirt and thongs; she was covered from head to toe in a long-sleeved flannelette shirt, long skirt and several layers of thick socks.
We began to talk, awkwardly, and I slowly took a history, eventually examining both of them.
Young children with scabies developed extensive immune rashes and it was the rash that caused the itch so children would scratch continuously, break their skin and develop sores all over their bodies. In the tropics it can be impossible to keep such sores from getting infected, especially since children rarely leave their sores alone.
I had read as much as I could, poring over dermatology manuals and photos of crusted scabies. The plaques, or crusts, that define the condition were typically creamy profuse flakes of skin on a background of de-pigmented thickened skin that was the result of repeated crust formation over decades. The crusts could be up to a centimetre thick and consisted of dead skin (keratin) and scabies mites and their eggs. Left untreated it had the odour of rotting flesh, whic
h is what it was.
Yinarri had sores and a scabies rash covering his entire body. It was unusual to have such an extensive rash in an older child since the body generally develops a degree of immunity to scabies after repeated exposure and with age. While Yinarri’s condition was unusual, it did not seem to be crusted scabies but a severe form of simple scabies.
Crusted scabies was the result of the body not mounting an effective immune response, so the presence of a scabies-immune rash in Yinarri went against a diagnosis of crusted scabies. I could feel the dampness on my hairline and wiped my forehead on the back of my arm. Eva and Rukula watched silently as the new ‘expert’, the scabies man, finished examining Yinarri.
I then started to examine Rukula’s skin, starting with her hands. My mind was racing. I knew Eva had pulled in a favour to get Rukula to the clinic and she wouldn’t come again just to be poked and prodded at for my education. Sweat was beginning to bead and I wiped my face again.
Once Rukula began to trust me, she showed me the rest of her skin. It was the first time I had seen the severe form of the disease outside of a textbook. Without treatment or antibiotics crusted scabies had a very high death rate (up to 50 per cent annually), usually from infection spreading into the blood stream through cracks in the cement-like crusts occurring in areas like joints and other skin creases. Despite the years that Rukula had borne her illness, her current state was nevertheless a medical emergency.
Before I could speak Rukula told me, ‘Doctor, I am not going to go to hospital.’
She knew what I had seen and guessed what I was thinking. This woman was shedding millions of scabies mites everywhere she went. I could feel myself aching to whisk her off to an isolation ward and have her treated then and there. Instead I reassured her that we would work together to solve the problem so that she and her family were supported and well cared for.
I tracked down her medical record. Paper files in remote communities were fascinating because while people moved frequently, they almost always came back to the area they were born or where they had ancestral connections. So once you tracked down the entire file it held a snapshot of a life, told from the clinic’s perspective. There were birth and vaccination records and handwritten entries from 50 years ago.
Reading the records it was clear Rukula’s condition had been first noted decades earlier when she was a young woman. Since then there had been multiple treatments, including transfer to a regional hospital for crusted scabies care.
To prevent transmission of the highly infectious condition to staff and other patients, crusted scabies patients are put into isolation rooms at the hospital. Anyone entering the room must wear disposable gowns, gloves, masks and boots. The treatment can last from two to sometimes six weeks, depending on the severity of the crusting. And the medication used can cause the transient sensation of severe skin burning.
Rukula started to talk. At her last hospitalisation some years ago, she had first been seen by a doctor in the clinic for an unrelated matter and when they saw her skin she had suddenly been put into a closed, isolated hospital room. Staff only entered gowned, gloved and masked and she was not allowed to leave the isolation room. She had cried every time the creams were put on because of the burning sensation. None of it had made any sense.
She had needed pain relief before each application of the cream. She said she had stayed two weeks in hospital and left with shiny healthy skin. But the crusts had simply reappeared just a few weeks after returning home. She had never again shown her skin to anyone at the clinic and as her condition had deteriorated she had increasingly isolated herself from her work and her community.
I looked over at Eva, sitting quietly, and I wondered how she had convinced Rukula to come to the clinic after all this time. Rukula had guessed that her family might be getting sick because of the flaky, cream-coloured plaques that she had developed since her last hospitalisation, especially her ten-year-old grandson and her husband, both of whom both shared her tent.
She washed every day and put sorbolene on her skin, but things had worsened and she had been forced to stop working as a healer. She was worried that others in her community would notice her skin and gossip. And as a traditional healer she felt embarrassed that despite her special knowledge, she could not help herself to get better. Scabies was a disease seen in Arnhem Land only after contact with Europeans and so her mother and grandmother had no scabies-specific knowledge to pass down.
She had been hiding for years and I had one chance to offer some real help. She did not really understand the condition (most doctors didn’t either) and her way of dealing with it was to hide in her tent and try as best as she could to take her grandchild and husband to the clinic for treatment when things got too bad.
My mind had begun to worry at the problem so I almost didn’t hear when she mentioned that she was about to leave for a funeral in another community. Professor Richard Manis, one of Australia’s leading infectious disease experts, had told me that scabies outbreaks often happened at times of funerals and ceremonies when people from the extended Yolngu communities of east Arnhem congregated in one place.
Professor Manis believed that increases in scabies rates at these times were likely due to a visit from an older person with crusted scabies, whose condition was hidden somewhere that could not easily be detected in screening.
Rukula’s planned travel would be a public health disaster. The treatment guidelines were clear: Rukula had to go to hospital for treatment.
I told Rukula that she would have the final say in her treatment but I wanted to talk her through the options and their possible consequences so she could make an informed decision. I offered to visit her daily at the hospital and said I would make sure we had the pain relief to help her with the burning creams. But she steadfastly refused to go to hospital.
Crusted scabies was not a notifiable condition and so was not subject to public health laws that in some cases allowed for people to be detained and treated against their will for the public good. And those laws would have been counterproductive here anyway. In Galiwin’ku we had a short-term win when we cleared a household of scabies, but we lost the war when scabies returned and the trust of that family and all their contacts was destroyed. Even if I could have hospitalised Rukula against her will and forced her to miss the funeral, my chance to do anything useful next time she was sick would be lost. And word would get around so that nobody, in any community, would feel safe with me.
No, Rukula was going to that funeral, no matter what. Family obligations, especially funerals, took precedence over everything. I reminded myself that if I had not turned up today and discovered her condition, life would have gone on as usual with just another outbreak of scabies at the funeral. Crusted scabies was a lifelong, recurring condition and there was no point going in with guns blazing just because Rukula had now come to my attention. I needed to step back and go at her pace.
The only useful thing I could do was to make her less infectious by giving her what medications we could before she left for the funeral, then by working with Rukula and Eva to find a way to complete the full treatment when she was back. When Eva agreed to Rukula’s suggestion that they do the daily treatment regime at home, Rukula grinned and nodded, promising that she would return. Before they left, Eva and I applied scabies treatment to Yinarri’s skin and gave him the remote clinic cure-all, an injection of benzathine penicillin (LAB) into his thigh to clear up the skin infections. This form of antibiotic hangs around for a long time so only one dose is needed, unlike tablets, which need a week’s course. Then we gave Rukula her medicines and she left with Yinarri.
Eva and I talked over the treatment plan and then I stayed to read some more case files but I was having trouble concentrating. If we went ahead with a home-based treatment we would need to visit every day for at least two weeks and still there was every chance it would fail outside of an isolation ward. It was unthinkable to dream up such an intense workload and then dump it onto the alr
eady overworked clinic. If I put Rukula into hospital I would lose her trust. If I asked the clinic staff to treat her at home I would lose their trust. It wouldn’t take much for the scabies man to be relegated to the long list of time-wasters.
13
LISTENING BEFORE JUMPING
The bimonthly steering committee meeting was looming yet again and now that I had been living in Nhulunbuy for almost three weeks I felt even more pressure to have something to show for the program.
On the morning of the steering committee meeting I was almost catatonic. I dragged myself out of bed just in time to get to work and Tanya wondered if I would be hit by a car as I rode my bike there; I was so far removed from the present. She called my sister. Right away Kamalini asked what was wrong—Tanya hated phones and rarely called anybody just for a chat.
‘Nothing bad has happened,’ Tanya reassured Kamalini. The truth was Tanya thought the pressure of the last few months—the workload, the lack of a clear path for the program and the lack of sleep—had sent my usually anxious mind careening out of control. I wondered how much further I could fall before I would be carried out of this remote town on a stretcher.
‘It’s just . . . Buddhi is really struggling. Everyone is at him to come up with a plan of action and he can’t do that until he knows he has something that will be useful and won’t cause harm. So he’s . . . pretty stressed.’ Tanya chose her words carefully so that my sister didn’t hit the panic button.
It didn’t work. Kamalini read between the lines and started to vent her frustration. Years of working with researchers and bureaucrats who put grants, pet theories and reputations before doing anything worthwhile poured out. Then she got some more details from Tanya and hung up, and called me immediately.
A Doctor's Dream Page 9