Tanya nodded. ‘Good idea,’ she said.
•
As our crusted scabies work gained momentum and occupied all of our energy in the field, I noticed the slightest of gaps opening between Sam and me. Our purpose no longer seemed to be perfectly aligned.
Sam saw the importance of managing crusted scabies but held on to his original plan to eliminate scabies as his headline goal. Living and working with families affected by crusted scabies had shifted my perspective and now I saw it as our primary role, not a means to an end.
Chris had done some great work on the WASH project. I started to think of him setting up a regional operations centre to support several teams like the one we had in Gove and eventually start putting in place teams for a national roll out. He had the skills to multi-task, was good with people and could carry a big workload.
He met the Sydney team and Sam began his slow hire dance. They focused on how he would consolidate the scabies elimination program in Arnhem Land. Because the first step to eliminating scabies was to focus on crusted scabies, the program remained cohesive but my dream was really to focus on changing the lives of as many crusted scabies sufferers across Australia as possible, as soon as possible.
Sam and I spoke about the timing and resources we would need to expand the crusted scabies work beyond Arnhem Land and the Northern Territory, and to launch a national campaign to raise attention and resources to the neglected issue of crusted scabies.
The field momentum was building; we had created a reservoir of success and goodwill that gave us the rare opportunity to make real changes. I knew this window would not remain open for long. People would move on, the program would become part of the landscape and other things would become newer and more interesting. While it was an issue in the minds of health ministers, health department CEOs and local healthcare workers and communities, while the Memorandum of Understanding was hot and we were gaining momentum in fundraising, we had a chance to set the agenda and take big strides towards taking crusted scabies off the list of neglected diseases.
31
RUKULA SPEAKS
Two weeks before the Miwatj twentieth anniversary celebrations, I was asked to speak at a meeting of remote health centre managers about our work.
I pulled an all-nighter in preparation for the presentation but in the early hours of the morning I had a thought. Rather than lecture to these people I would simply show them Rukula’s video and then we would have a discussion.
The video of Rukula made it clear that our work was offering concrete solutions to the previously unsolvable problem of crusted scabies, as well as the usually missing ingredient: on-the-ground support to carry out the treatment program. The regional managers, even Rhonda from the Ramingining clinic, were soon asking us when we could visit to help them find and treat crusted scabies patients in their communities.
Oliver and I were then asked to speak to the homeland health organisation Laynhapuy, or Laynha, in Yirrkala.
‘Just make Lyclear more available so people don’t have to wait in line and get health checks and urine tests simply to pick up some cream,’ the Laynha manager had once said. One of only a few Yolngu Matha speakers in the balanda world, he had lived and worked in the region for years so I didn’t try to push our program onto Laynha.
But one day he approached us for help. Some of the families we had been managing were also Laynha clients as they spent part of the year on homelands serviced by Laynha. He had seen how these families had improved with us and he had also seen a staff member affected by crusted scabies return to work after years away, thanks to our help. He organised a meeting of all his clinical staff and we showed the video of Rukula speaking. He asked if we could sign a Memorandum of Understanding setting out a way to work together and share records.
Oliver and I felt like we were finally reaching the regional managers.
•
Based on that success, I used a similar approach when asked by the regional manager of Groote to speak to the large clinic in the community of Arungana about managing crusted scabies and recurrent scabies. I was upbeat and positive, finally running a program I was proud of.
I was at the Arungana clinic with the public health nurse late one afternoon, poring over a list of about twenty-five people they had seen recurrently with scabies in the last three months. I described the symptoms of crusted scabies and asked if any one of those on the list fit that description. The nurse immediately pointed to a name. Then I asked what the association was between that name and the others on the list.
We first pulled up the clinical records of the patient with crusted scabies and the children in his house, then the rest of the householders and those in houses frequented by the crusted scabies sufferer and there, before our eyes, appeared a map of decades of crusted scabies suffering.
This patient had endured hundreds of clinic visits, treatments and antibiotics. When a correct diagnosis of crusted scabies was finally made, clinic staff had pushed him to go to hospital. When he reluctantly agreed, his clothes were removed in accordance with infection protocols, and he was dressed in an infection control suit. His clothes were bagged for treatment or burning. He had started to get anxious and disruptive while waiting for his flight and was sedated and sent on his way. He discharged himself from the isolation unit the next day against medical advice, returned home and continued to present at the clinic with sores and infections, some so severe that they affected his bones and joints. He eventually had an amputation of a limb that had developed severe infection and gangrene.
With mostly transient staff all overwhelmed with the demands of the day, no one had ever had the time to stand back and connect the dots but as we looked through the files, I saw that the man’s teenage son and daughter had both been struck down with rheumatic heart disease and kidney stress, known to be the result of streptococcal skin infections often related to scabies.
These two teenagers already required specialist heart appointments, kidney tests and monthly injections. With continued skin infections they were on the fast track to heart surgery and requiring lifelong Warfarin, a rat poison used to keep blood thin in patients with artificial heart valves, as well as dialysis for failed kidneys.
One of the two had a child barely one year old. This granddaughter of the patient with crusted scabies had already been to the clinic eleven times for severe scabies and sores in her short life. She had been recorded as having Failure to Thrive and you didn’t need to be a fortune teller to read her future. And this household had many more children living in it, all likely to be in the same situation. The ripples of suffering radiating from one case of crusted scabies eventually touched everyone in the community in some way.
Going through the records with me, the public health nurse shook her head solemnly. She was grateful that I had chosen not to give a presentation on these findings to the whole clinic. I had heard that the clinic manager ran things his way or no way at all so I had simply shown them all Rukula’s video and our general program findings. No advice, suggestions or judgement; just some interesting information. That had disarmed the manager and a useful discussion had ensued. The manager had agreed to call me for help with scabies, but I felt sure he wouldn’t. It was hard to change a ‘fix-it-now’ acute-care approach to prevention and community-based work.
‘Something more must be done!’ the nurse said that afternoon in private but I knew that without the clinic manager’s blessing, nothing would happen. This manager had many years of work in the community to his credit. It was clear to me that we had to get him onside or leave.
As with many other case files I had studied, frontline staff confronted by patients repeatedly presenting with a disfiguring skin condition eventually started to blame the patient and label them ‘non-compliant’, blaming their condition on ‘poor hygiene’. Most members of staff had tried their best and failed, and eventually the human response is to find someone to blame. The usual target is the person least able to defend themselves against
a wrongful accusation.
The bottom line was that the old protocols were still in use (the next edition of the Central Australian Rural Practitioners Association remote clinic guidelines with our new protocol was yet to be released and so not yet widely adopted). The old treatment protocols had been developed for patients in urban nursing homes, not people living in remote areas where scabies was endemic and even though those protocols did not work in these situations they were the protocols all remote staff had been trained in.
I just had to remain engaged and wait until clinical staff and managers were ready to hear the message. In the meantime we had to make crusted scabies a far more visible disease and work to make sure our chronic-care case management approach became the standard of care.
32
HOME REPAIRS
When Chris came to stay with us in Nhulunbuy I organised to visit some houses so that we could survey washing machines around the communities. In one house there was a nappy shoved into an unrepaired hole in the wall, keeping out the snakes and insects. In another, dried faeces spread out from a toilet long ago blocked by a blanket and never repaired.
‘I’ve never seen anything like this,’ he said quietly to me after the third house. He was rubbing his sweating forehead with his forefinger, his other hand on his hip. ‘Bruce has invited me to come to the tip with him and scavenge for spare parts. I think I might go and spend some time with him. Get to know him a bit . . .’
I nodded. I remembered the disorientation I had felt during my first trip to Elcho Island. I should have taken him to visit Djinini, an elder in Yalambra—his house and garden were a work of art. He and his wife had carefully polished every reclaimed piece of timber, Yalambra paintings lined the walls and a breeze blew through the closely planted, shady front yard and into the house, keeping it cool. Like empty nesters the world over they had created a home they could relax in and enjoy. For most people living in remote communities, however, the nest only grew fuller each year and mattresses filled every available space. Few balandas spent much time inside a Yolngu house and Chris had had his preconceptions disabused much faster than most new arrivals.
That evening when Bruce dropped Chris back in town he was grinning like a kid in a toyshop.
‘Everywhere he looked, Bruce saw something useful!’ Chris enthused. ‘He’s keen to help out with the washing machine project.’
Chris felt comfortable when he could see a solution on the horizon and that morning all he had seen were problems. His own apartment in Sydney was a rental, he said, and when his dishwasher broke down he called the real estate agent. After three weeks of trying and the real estate agent fobbing him off, he gave up and learned to live without a dishwasher. If it had been his own apartment, he would have sorted it out within days.
The land around here was not owned by individuals and the houses were owned by the Northern Territory Housing Department. There was no private ownership but there were long-term lease arrangements for land. To obtain a lease was likely to be a lengthy process with multiple bodies having veto rights. And even with a lease, the high cost of tradespeople and materials in these remote areas had to be reckoned with so home ownership was rare.
Tanya drifted off as Chris and I spoke over the top of each other, getting to know each other in person for the first time. ‘Nobody fixes a rental,’ she mused. Listening to Chris, Tanya wondered why everything had to be so complex. Only a specialist could fix a dishwasher, build a house, grow our food, teach our children, manage our water, tell us what the weather would do or when we could light a fire. We needed a specialist to help us have our babies and even to farewell our own dead. We didn’t know how to do the most basic things any more. So when the specialists weren’t around, we were lost. The Yolngu were suffering from this extreme fragmentation. They had access to almost none of the specialists and services that usually hid the lack of basic skills that had become the hallmark of modern civilisation. Their own highly skilled culture struggled under the weight of mainstream education, elders were dying twenty years earlier than the average Australian and in some communities people were unable to exercise the basic right to imagine and give voice to their own future.
The power went out in Nhulunbuy every few weeks or so. It was normally back on within hours but occasionally the blackout would last a day or two, and once it stretched on for three long, hot days. The Facebook noticeboard teemed with outrage. Freezers were thawing, generators were running all over town, dinner was raw and, worst of all, the population of Nhulunbuy had to feel the full impact of the tropical heat. Two weeks without power was simply unthinkable.
Rukula’s house had been vandalised recently and her electricity meter box was broken. When she called to have it fixed the shire called Northern Territory Housing and they sent someone over straight away to disconnect the power for safety reasons. Once that was done they informed Rukula that she would need to pay $1500 to reconnect the power and have the box fixed. She didn’t have the money and while the shire staff wanted to help her their rules said they couldn’t. The Northern Territory Housing rules said their staff couldn’t help either, until the money had been paid. So Rukula’s request fell through the cracks and for two weeks she and her household of twenty people went without power or water, cooking on a fire outside and borrowing bathroom facilities where and when they could. It was the only time her crusted scabies had relapsed since we started our treatment program.
Finally Rukula asked me to see if I could help. She had tried everything. Her family was suffering and she just wanted to be able to cook meals again and to have lights inside instead of camping outside under their streetlight in the evenings.
I quickly found myself up against the same circular argument. Everyone wanted to help but nobody could. I demanded to speak to the next person up the chain, then the next, until finally I reached somebody who could make some real decisions.
I tried appealing to compassion—imagine if it was your house and you were told there would be no electricity for weeks—but that got me nowhere. So I upped the ante. ‘There are public health implications. You are looking at the beginnings of an infectious disease outbreak.’ Leaving any household without power or water was a risk to public health.
‘I will make an exception this one time.’
Almost immediately, Rukula’s power was reinstated. It was a repeat of the toilet episode and the lesson was etched a little more deeply: the Yolngu had no voice.
The contractors who did the work had no incentive to do a job that would last. With so many people in the house eventually Rukula would need something else fixed and we would soon run out of exceptions.
In an environment where only specialists were allowed to do anything, but nobody took any notice of repeated requests for specialist help, the inevitable result was learned helplessness, in just the same way as Chris had given up trying to have his dishwasher repaired.
33
MIWATJ CELEBRATIONS
The day of Sam’s visit approached. It would coincide with the Miwatj anniversary, when the Memorandum of Understanding (MOU) would be signed. I decided it was time to put our field achievements on paper as our first annual operations report.
Hospitalisations and crusted scabies recurrences had both reduced dramatically since our scabies program began, and the general scabies rates had at least halved after the healthy skin days we had done.
Sam shared our inaugural annual report with the Northern Territory ministers and health department CEOs in Darwin and our stakeholders in the field. After all the risks he took, all the uncertainty he faced and all the apparent inaction he had waited out, he finally began to get some real feedback.
We were being hailed as having made the first major advance in scabies prevention in the last decade. Oliver, not one to lavish praise, said the speed with which Sam and I had overcome the mountains of resistance he had experienced over eight years was nothing short of miraculous.
And finally Sam and Jennifer arrived in Gove to see
the other side of the program they had been working so hard to support from Sydney.
Sam crossed the tarmac and found himself surrounded by the unfamiliar sight of a sea of thongs and shorts, the ubiquitous Northern Territory outfit. But once we met the Rio Tinto CEO in the expansive boardroom of the multi-million dollar aluminium mining operation, he was in his element.
He thought Rio could offer the program some housing, but for the first half hour of the 45 minutes the CEO had allocated, Sam asked about the older man’s business challenges and his daily work headaches. It was soon clear Sam wasn’t there asking for a handout and he managed to create a collegiate atmosphere before offering Rio Tinto the opportunity to partner with an organisation that was rapidly changing the face of Indigenous health.
The CEO was ready to join our crusade by the end of the meeting. But he said his goodbyes and left his assistant behind to tell us that the reality of housing shortages meant there was zero chance of a Rio Tinto house being available for the program.
Next we visited an elder who had initially been employed to the scabies program by the Northern School of Medical Research (NSMR). The man spent an hour criticising most of our program partners as I shifted awkwardly in my seat.
The electricity was off all that night while Sam and his team sweltered in the heat. After riding a wave of triumph I had foolishly believed things could go well.
But Tanya only laughed. ‘We get blackouts that last three days, the politics is intense and it’s hard to pin anybody down to anything. You want everything to go smoothly and showcase the work, but I’m sure Sam prefers to see things as they are.’
I still longed for everything to work out, just this once. The following morning the Sydney team looked tired, hot and slightly crinkled and I realised they were all hoping not to mess up just as much as I was.
Sam spoke to the Miwatj board. There were influential land council chairpeople and traditional owners from the region and Sam found himself speaking to a room full of expressionless faces. There was no familiar body language or verbal cues to tell us how our message was being received.
A Doctor's Dream Page 19
