One day we discovered a common interest in fishing. Fishing up in the north of Australia is some of the best in the world. Barramundi anglers spend thousands of dollars to come to Arnhem Land on charter tours to bag a barra. The crocs, stingers and sharks only add to the thrill, and even the most apathetic teenager would come to life when offered a trip out to the homelands or off hunting or fishing.
I provided the services of our Troopy and Tyson organised to take me to one of his favourite spots. He first took me to the golf club. Tanya and the kids tagged along and we parked the Troopy and walked around the club, onto the green, past a few golfers and over a bridge. Then, where the green continued down the hill, we snuck off into the wetlands and picked our way through the thick growth. Tyson stopped and nodded. He reached out and hacked off a couple of reeds the size of saplings with his machete. Then, without another word, he headed back to the Troopy. As we neared the car park I overheard one of the golfers cursing.
‘Someone’s nicked me bloody ball!’
‘You’ve just lost it, you idiot!’ One of his friends laughed at him.
‘I didn’t. I swear. I’ve been looking for the last ten minutes—I saw where it landed and it’s just disappeared.’
I felt myself grow warm and hurried our ragtag bunch back into the Troopy. We were almost at the beach when Tanya turned to break up a fight in the back seat.
‘Where did you get that?’ she asked our son.
‘It was on the grass.’
I swung around. He was holding a golf ball, triumphant.
Tyson lit a fire on the sand and showed us how to strip the bark then heat the reed to straighten and harden the two-metre length of soft wood. He heated metal spikes sourced from the rubbish tip and pushed the burning ends into the wood where it had been bound by fine wire to prevent splitting. And soon we were practising how to hit a snapper or barra in croc-filled rivers.
Then we dropped the family home and headed out bush to use our new spears. It became a regular event whenever I had time and Tyson and his friends were in the mood.
On one of these trips we started to talk about his skin. He knew much more about it than he let on. He suffered with the illness but also he knew he was making his family sick.
Once the wall was down I got to know him as a funny, passionate young man. He liked music and would have been at the Arnhem Club dancing to the weekly DJ, if not for his skin. He wanted to be well but nothing he had tried, including following all the instructions of clinic staff, had worked.
Eventually Tyson agreed to go to hospital one more time for treatment. I spoke to him about how important it was to complete the two-week treatment and not leave early. With Oliver I visited him in hospital and gave him a few junk magazines to keep him occupied. We then organised to clear his house, in partnership with the matriarch who had come to see me. I sat with her and designed a treatment plan, cleared it with the family and the clinic manager, and we all agreed on a date and time. I was quietly thrilled. This was what I had dreamed of even before I left Canberra: a program that people asked for, were motivated to engage with and took ownership of. There was no permanent fix or cure for crusted scabies but if we could give the family a few months of bright, shiny skin and sleep that was uninterrupted by itching then maybe they would see a reason to keep up with the preventative regime.
•
One Sunday afternoon I was in the Yalambra clinic, which was closed for the day, when there was a knock at the door. I rose to see who it was. Standing at the door, shuffling her feet, was Dhimurra, the crusted scabies patient at Yalambra whose toilet had been blocked, and who had sent me to Banana Farm Bruce, the washing machine expert. She and I had developed some rapport over the months but she had never engaged with the scabies program and I had never pushed her. Now she was asking to join the program.
I quickly stepped aside to let her in. Her husband had seen the results in the other families and put pressure on her. She was acutely concerned that her secret disease remain private.
I cleared the table of the patient records I was poring over and turned to give the middle-aged woman my full attention. She had heard the scabies story repeatedly and didn’t need any more information. She just wanted to get started. We mapped out a treatment plan we were both happy with.
As she was leaving I asked her why she had finally decided to come. She mentioned May, one of our early success stories at Yalambra. May had been a withdrawn woman, skulking around the peripheries of the community covered from head to toe in unsightly sores. But since managing her crusted scabies she had transformed. She was confident, spoke at Yolngu meetings and had started to wear sleeveless shirts.
I assumed Dhimurra had been inspired but I was wrong.
‘May is not a traditional owner.’ She brushed her hand down at knee height. ‘She is down here, and’, raising her hand to near the top of her head, ‘I am up here. It’s not right that her skin is so much better than mine . . .’ She shook her head. ‘Shame.’
Dhimurra told all her colleagues and friends that she was going to hospital for surgery and asked to be kept in isolation so that no one would see her.
When I went to see her in hospital I was nonplussed at her only slight improvement. I stuck around to watch what happened and found the junior staff were just giving her ivermectin pills and leaving the vital creams for her to apply herself, which she didn’t. She could be an abrasive woman and the staff were afraid of her so the creams stacked up in her hospital cupboard and the scabies mites enjoyed life in her thick crusting without being affected by the systemic medicine.
So with her permission I helped her apply the cream myself and she agreed to do it if the staff would not. We left the cream on overnight and the following morning much of the dead skin sloughed off in the shower with a good scrub and an antiseptic sponge. Within a few days the difference was striking.
But after just five days Dhimurra discharged herself and found a lift back to her community where hundreds of people were gathered to watch a performance of the visiting Bangarra dance troupe. Her skin was looking better and she had decided that she’d had enough. It took me two days to convince her to return to hospital.
While she was in hospital we worked with her extended family to create a scabies-free house. When I saw her husband some months later the first thing he told me was that he and his children were sleeping full, restful nights for the first time in years. No more scratching and suffering. But he was concerned that Dhimurra would not comply with the preventative treatment and would relapse. I assured him we would do our best to supply her with the creams and even help her apply them if needed.
26
MODERN DAY LEPROSY
Researchers at Darwin hospital had found that crusted scabies was most prevalent in people who had family members who had suffered, in previous generations, from leprosy. I wanted to study the epidemiology of this neglected disease. I also wanted studies done on traditional medicine and why moisturisers formed part of an effective preventative regime.
There was a long list of things we wanted to do but right now the operation was still just Oliver, Raminy, Tanya and myself in the field and Sam Prince and Jennifer McClaren, the CEO, in Sydney. It was time to hire a full-time nurse for the field to manage the day-to-day crusted scabies work, and a national operations manager to expand the program.
It was also time to study outcomes in the real world. I had permission to check the records of our patients and their immediate contacts and I found that surrounding every unmanaged case of crusted scabies were concentric circles of poor health. At the centre of the circle was the person with crusted scabies themselves, with decades of recurrent illness, hospitalisations, sores, complications due to skin infections and septicaemia and, ultimately, early death.
The more people trusted me the more they shared the extent of their isolation, stigma and bullying. The records I researched were full of advice given to patients on better hygiene as a way to prevent scabies. There was no re
search to prove that better hygiene would affect scabies and most patients felt blamed for their condition.
But it was other families and in some cases community leaders who were the most scathing. Entire families were stigmatised and bullied once it became known that their house was a reservoir for scabies.
One day, one of my patients at Yalambra had had enough and castigated the children who relentlessly bullied her nephews. That night a community elder, related to the bullies, called the Night Patrol to her house. Night Patrol was a community solution—people took turns driving a paddy wagon around and picking up drunks, delivering them home so that they avoided getting entangled with the police and legal systems.
But this time Night Patrol was sent to pick up my patient and force her to go to hospital.
In a moment of dramatic coincidence a television crew was travelling with the Night Patrol that evening. The crew was on hand to film the resulting altercation, and it made for juicy television. It didn’t seem to matter that they had no right to be there, uninvited, in someone’s private home. My normally quiet, unassuming patient couldn’t take it anymore. Shamed in front of her family, community and now the nation, she ran away, threatening to kill herself.
Stories of merciless bullying of crusted scabies families were the norm. Children who went to school despite their infectious condition were excluded by teachers, which could mean they missed weeks and months of school at a time.
Most of my patients and their closest contacts had to give up employment and were often in hospital, having succumbed to complications such as bacterial infections in the blood, which could lead to abscesses, amputations and even quadriplegia.
Beyond those people lay the rest of the household, who picked up scabies frequently. The social cost of living in that house was high. The ripples extended further and further afield. Nobody, it seemed, remained untouched.
•
As I got to know the families I also discovered that more than a few children in these homes had been investigated by child protection services for suspected parental neglect. When I dug deeper, recurrent severe scabies and sores and ‘poor hygiene’ were listed as significant factors in the referrals. I could see how a young child repeatedly presenting with scabs and sores over their whole body might be mistaken for parental neglect.
The grandson of one of my patients at Yalambra had been placed in foster care with a balanda family in town. Scabies had featured in the reasons for his removal. The child was enrolled in the local childcare centre. After a few days he and his foster mother were diagnosed with scabies and a ripple of horror went through the centre.
The childcare centre called the Centre for Disease Control (CDC), who gave them the number for the One Disease program. I was amused that we were fast becoming the local experts but rang the CDC right back and told them it was inappropriate to handball a potential public health outbreak to a non-government organisation (NGO). The current protocol, right or wrong, was to treat everyone who had been in contact with the child. It was a big job and I agreed with the CDC rep who thought it was probably unnecessary. But I didn’t like the idea of public health decisions being made ad hoc by an NGO in a country that had the resources to manage outbreaks properly.
When I got off the phone I shook my head.
‘Look at the difference,’ I grumbled when I came out of my office. ‘When scabies touches the ngapaki community, even peripherally, there is an emergency panic response. Meanwhile, on any given day in a school in any of the Yolngu communities there will be several children in each class with scabies!’
The health costs had been well documented, in fact it was the role of scabies in rheumatic heart and kidney disease that had brought it to the attention of the Northern School of Medical Research. But the costs of crusted scabies, specifically, were horrific. Amputations, quadriplegia, children being taken away from their families . . . yet it was still a disease few doctors had heard of, the protocols for the condition were inappropriate to these settings and little was spent on research into new medicines.
‘It seems like the only solution, to anything, is to continue to find devoted people and then give them all the freedom and support they need to do a good job,’ Tanya said.
I nodded. ‘Yeah, but you can’t do that in a big system. As soon as it gets too big to be individually accountable you have to use policies to regulate people’s behaviour and try to guarantee the outcome.’
‘Which is impossible.’
‘And as soon as you need to use policies to curtail the worst in people you start to lose the best in people.’
We were both silent for a moment.
‘It all comes back to the same old thing: Who is the person with the knowledge, motivation, background and aspiration to do anything beneficial in their own life?’ Tanya tapped at her own chest. ‘You. You have the most riding on it. You are standing directly in the flow of cause and effect . . .’
‘That’s why we provide the information and support, and freedom, to take up the scabies management program or not. Most likely, people will keep treating themselves unless something gets in the way because nobody wants to live with scabies.’ I paused. ‘But where does the public good come in? When does the individual’s right to be in control of their own decisions end, and the right of the children in a community to be safe from scabies begin?’
Tanya frowned. ‘And who decides where that line is?’
•
While Tyson improved quickly and was keeping up with his regular preventative regime, keeping his family and household clear of scabies was a real challenge. There were six young families all living in a three-bedroom house. Of these, twenty or so were young children and one was a person at risk of recurrent crusted scabies. The chance of residual pockets of scabies and endless cycles of recurrences of crusting were near guaranteed.
The matriarch and mothers asked for another household treatment and requested we use the faster-acting benzyl benzoate. They told me the Lyclear was useless.
One of Tyson’s sisters had taken her children away to another community and then returned with all of them covered in scabies from their trip, but I was thrilled to learn that Tyson had remained free of scabies despite the daily exposure. It was a serious test of the prevention strategy and it had passed with flying colours.
But Tyson had another sister we were all worried about. She refused to speak to anybody outside the family, no matter how much her mother and sisters begged her to let me examine her, and I was afraid she might have crusted scabies as well.
There was a sense of urgency surrounding Tyson’s case. If we couldn’t find a way to keep the household scabies-free the children of his house were at serious risk of being removed.
But I refused to force the silent sister to do anything and told her I would wait until she was ready.
•
Miwatj Health referred Penny, an old school nurse, to us for our nursing position and she hit it off with the patients straight away. Sam and Jennifer were planning to come up at the end of May so I waited for a quiet afternoon to speak to Oliver about the possibility of Tanya and I leaving after Sam’s visit. I knew he would feel betrayed and abandoned but it was time for us to move the program onto the next phase.
I spent a couple of hours reminding Oliver how far we had come and how bright the future looked. He was in charge of the field operations of a program that people appreciated. And having set it all up for him and ironed out the kinks, I was afraid it was no longer justifiable to cover my salary and accommodation when staff needs were shifting to community workers and nurses. I knew it would be hard for him but I thought it was probably time for us to pack up and head south.
‘Good idea, Buddhi,’ Oliver said cheerfully. ‘Otherwise you might find yourself still here in seven years time, taking the job back over from me!’
I laughed, relieved. Oliver was looking forward to the day he got to run the program with nobody looking over his shoulder.
When I got
home I told Tanya to book our tickets home and this time she didn’t wait for me to change my mind. After almost a year living in east Arnhem, Tanya and the children would soon be leaving. Although she booked a ticket for me too, Tanya wasn’t sure I would get on the plane with them.
27
PROVEN VALUE
Peter McClintock was a dermatologist who had been visiting east Arnhem to help with skin-related programs for more than a decade. A few weeks after I visited Tyson and his sister at home, Peter called to say he was coming and together we visited all the crusted scabies patients I had been supporting.
We went to see Tyson and to review the health of his uncommunicative sister. We were concerned she might still be an undiagnosed patient with crusted scabies.
The house was clean, thriving and healthy. The children were all scabies-free and had glowing skin. It was almost too good to be true. And then it got better. The frightened, silent sister decided to come to the clinic and Jemma, her favourite nurse, introduced her to the visiting dermatologist. Peter checked her carefully and took a skin scraping. He offered the microscope to her and she peered carefully into it for a full minute, waiting for a sneaky mite to show itself, but nothing moved on the slide. She had not let anyone examine her, assuming that her old scabs, which in some places had looked like her brother’s crusting, were evidence that she had the same disease. Once the household had been properly cleared of scabies for several weeks and everyone’s skin had had a chance to heal, she had dared to have her skin examined and after months of withdrawal and isolation she broke down and cried when she saw with her own eyes that she did not have crusted scabies.
The next patient Peter and I saw was the last untreated crusted scabies patient on the entire Gove peninsula. She was a busy community leader and in between appointments and community meetings we managed to have her see us in the clinic. It was a rare opportunity, so first she was seen by a physician for her diabetes and other chronic conditions. Then I introduced Peter and the two of us knelt at the woman’s foot and removed the three layers of socks that she used to hide the scaly, flaky skin she had had for decades.
A Doctor's Dream Page 17
