‘I’m not sure what I would do if I was you, Sam . . . I think you have to buy some time by doing things that will be accepted and not harmful and that don’t require massive logistics and resources. To begin with, focus on supporting the popular healthy skin days. They are easy to replicate and they help with environmental health. If they’re done well, like in Wadeye, they could also have a lasting impact on scabies and sores. But we need to develop long-term relationships in communities for these types of programs to succeed. We need to buy time and use it to look for a valuable contribution to make for the long term.
‘And One Disease needs to adopt a completely different mindset. We need to see the program as a marathon, not a sprint. We need to start slowly, building confidence.
‘Most importantly, we have to try to build local capacity and hand over as much as we can to community staff who will still be here in decades, in generations, unlike the rest of us.
‘It may be too much of a detour given the momentum we have behind the MDA but the bottom line is that I can’t do the program as it stands.’
Sam didn’t miss a beat. Instead he told me a story about a man who borrowed $50,000 from his neighbour and then lost it. As the day to repay the loan approached he paced up and down his bedroom, annoying his wife with long-winded complaints about his predicament. The closer the due date came the more desperate was the man until eventually, late one night, his wife had had enough. She threw open the window across from the neighbour’s house and yelled out to him, ‘My husband has lost your $50,000 and won’t be able to pay you back!’ Then she closed the window and told her husband, ‘There you go, now it is his problem. Now let me sleep!’
‘We need to open the window, Buddhi, and tell Lawrence and Graham that we think an MDA won’t eliminate scabies and that there is no plausible two-year scabies elimination strategy.’
Sam was right. This $5.5 million elimination strategy was their problem as well.
Then we moved into negotiation mode and discussed a new partnership. It was three in the morning when we finished. I apologised for keeping him so long but Sam said he was usually up at this time as it was the one time of the day his phone stopped ringing.
The next morning I called Tanya. ‘He agreed to everything, Tan! He could see exactly what I was talking about; he was totally on board. This is why I took this project on. Sam is a good listener and strong enough to challenge his own preconceptions and back his staff all the way. He’ll last-mile this project and give me all the flexibility I need to focus on relationships and creating value. We’re going to find something to leave behind, Tan. We’re really going to do it!’
Tanya was quiet for a moment. ‘That’s great, Bud! Well done.’
I felt her uncertainty as a momentary shadow but it wasn’t until later that I realised I had got off the phone to her late one night saying I was handing back a giant headache and was coming home to spend some time with the family without being distracted and stressed, then the following morning I was thrilled to announce that I had taken on even more responsibility for the program. Rather than walking away, I had somehow tied myself more completely to its fate. And my next big challenge would hit faster than I expected: I had to face Lawrence and Graham.
9
THE EMPEROR HAS NO CLOTHES
I spent a frenzied day on the phone from Galiwin’ku renegotiating the program with Sam and discussing how we would move forward without being wedded to a detailed plan. For the first time in months I had slept for eight long hours, unbroken, and most of the cloudiness in my head was gone. I meditated for twenty minutes and did some yoga—things I hadn’t been able to force myself to do for months—then went for a ride on a borrowed bike, thinking over my last conversation with Graham.
Graham wanted outcomes. He wasn’t asking to micro-manage me but he did want to be kept in the loop. That was reasonable. I felt my anxiety rise as I thought about roving door to door with a megaphone calling people from their houses. I shook my head. That wasn’t what I had been asked to do. I was supposed to be designing the program and coordinating its implementation. I took a deep breath and tried to focus. I only had to keep the stakeholders calm while I consulted in communities and found valuable contributions for the program to make.
I organised a series of management meetings with Lawrence, Graham and Sam to get agreement on the change in strategy and priorities before taking it to the wider steering committee. When I flew from Galiwin’ku to Darwin and arrived at Lawrence’s office, the atmosphere was already tense. Lawrence and Graham sat opposite me, and Sam dialled in by phone.
The meeting soon became confrontational. I said plainly that nobody had yet designed an effective elimination strategy for scabies and that without a vaccine a mass treatment strategy would not work.
‘What we have always talked about is eliminating the disease as a public health issue, in other words high-intensity scabies control. And it has to launch with a bang to get stakeholders on board. If people are able to avoid engaging, the program will fizzle as so many have before,’ Professor Johnson argued.
Sam gently asked a question that would have been too inflammatory coming from me: ‘Don’t the results from Galiwin’ku suggest the MDA is not likely to work?’
Graham responded immediately. ‘That’s jumping to conclusions. Even without the data from the second MDA, the prevalence has halved.’
My eyes narrowed involuntarily. Those figures did not reflect the latest screening results we were seeing on the ground in Galiwin’ku, especially since the suspected crusted scabies outbreak.
But what I had wanted to discuss was moving my role out of the Northern School of Medical Research (NSMR) team to sit independently, and I wanted to get agreement about the principles of a new approach. Graham cut me off. NSMR had decades of experience and was the natural choice of partner to run the program, he said bluntly.
The next morning when I woke it seemed that my months of obsessing had crystallised into a clear way forward. Having announced that the emperor was naked, I was free. I stepped over to the small hotel room desk, opened my laptop and typed out the entire thesis behind the new program proposal in one hour. I hit send and the new proposal went out to the team, and in it was my suggestion that I coordinate the program independently, working directly with One Disease rather than through NSMR.
The following day Graham emailed the group. He agreed with the principles of my proposal and therefore didn’t need to hear a twenty-minute explanation from me. And he was opposed to moving the role of program coordinator. NSMR was an experienced operational entity and the role should sit with them. However, if I wanted to move the position to One Disease, he said, then let’s make it a clean break and be done with it.
We met again that afternoon. Once again tension replaced the early collegiality I had experienced from the NSMR team but today I got straight to the point. It must have seemed as though there were two of me and nobody, including me, knew who would turn up: the sweating, mumbling man ridden with anxieties or the persuasive, clear-headed one who could see three steps ahead in the game. This time I was firing.
Everyone agreed that the scabies program would be driven by evidence and would focus on using the right approach to allow buy-in and flexibility. They all agreed that the timing would be driven by the communities, not by the program.
Then Lawrence spoke. ‘This is all good, Buddhi, good to see you’ve got some clarity on the approach now. I’m happy to tick off on all of the above as long as there is an intensive start to the ivermectin mass drug administration.’
I blinked. What was he talking about?
Lawrence paused for a moment before deciding to shift focus.
‘Now, about your position, the program coordinator role—’
‘I don’t agree it should be based at One Disease or that a secondment to NSMR would work,’ Graham interjected. ‘But if that’s what you’ve decided, let’s get on with it.’
Sam watched the faces of Lawrence a
nd Graham across the Skype hook-up from Sydney. ‘From where I sit the body language in the room is not looking good. We have to remember why we are all here and that we have a common goal. Let’s stay positive.’
And that was the end of the Farewell Scabies proposal. NSMR was still represented on the steering committee but they would not be involved in the field operations. It was just Sam and I now, coordinating the program with our partners supporting us. Sam was spearheading the fundraising and external relations while I etched out a program in the field. I figured we had maybe two years to find ourselves a useful contribution to make in the area of scabies control . . . or we would shut up shop and leave.
Part 2
START TO DO SOME GOOD
10
HUMBUG
After making the clear break from the Northern School of Medical Research (NSMR), I took a couple of days off to visit Tanya and the kids. Canberra was stark and sunny and, almost eight months after I first met Sam, the days had grown short. Housing in Barraka had fallen through yet again but Tanya had given up waiting. Instead she had decided to fly Claude Stein, a brilliant vocal coach whose chance one-day workshop had helped take her burning passion for singing out of the closet, from New York to Sydney to run his first workshops in Australia. To make it happen she would have to risk about $40,000 of our money. It would be an intense one-woman marathon of sales, marketing and organising—all her least favourite pastimes. And Claude was available in eight weeks for two weeks. Take it or leave it. She took it.
‘I’ve handed in my resignation to NSMR, Tan. So that’s it. It’s all up to us now.’
Tanya smiled. ‘Good.’ She knew I was afraid of proving Lawrence and Graham right—that, on our own, Sam and I didn’t have the capacity and expertise to run a useful program—but she clearly had no doubt we would do it.
•
Back in Nhulunbuy I worked out of the Miwatj office and stayed in a motel while waiting for our house and mapped out a detailed strategy. The program’s official title became the East Arnhem Scabies Control Program. But, for work in communities, I decided we would go back to the name that had been used across the Top End for over a decade, the Healthy Skin Program, to symbolise that we would build on the efforts of what was already being done.
And managing risk continued to be one of my major preoccupations, especially now that the entire field operations rested on our shoulders. I was working clinically with patients in partner health centres. Each time I travelled by vehicle I was acutely aware of how disaster could strike, particularly in communities where young children were only an errant ball away from the road. An accident, even with a pet, could mean being driven out of town. Then there were the risks of disempowering entire communities by unskilfully starting a new program and trialling new strategies. Tanya and I spent hours working on risk-management plans and insurance. We decided to coordinate the scabies program design work through EveryVoiceCounts, a consultancy we had set up earlier to design people-focused programs. EveryVoiceCounts signed a contract with One Disease to design and implement the scabies program. A lot of the risks in the field were ours to own.
•
Every two months I chaired the scabies program steering committee meeting. The bimonthly phone conference was a gathering of senior staffers from NSMR, the Northern Territory Department of Health, One Disease and Miwatj, and each time it drew nearer my anxiety increased as I wondered what I had to show for the last two months.
Two days before my fifth steering committee meeting, in July 2011, Graham emailed to suggest that NSMR pull out of the committee now that they were not involved in the program coordination. I worried that the rest of the steering committee would see this as a major vote of no confidence but Sam worked the phones and Lawrence and Graham were on conference call with Sam and me two days later. They asked me about what I had done; what exactly had I achieved? They wanted numbers and they wanted data. The rest of the committee members listened quietly while I responded through gritted teeth. I wanted to ask for results from the Galiwin’ku trial in return, but I was burning bridges faster than we could build new ones so I bit my tongue.
•
In mid-July there was an infectious disease conference in Cairns. Doctors, nurses, clinic managers, environmental health officers and policy officers gathered together for three days to discuss infectious diseases, including scabies and strongyloides, both parasites found almost exclusively in remote Indigenous communities.
I wanted to meet Professor Richard Walleran, a medical parasitologist held in high esteem by many in east Arnhem and at the Aboriginal Resource Development Service and Miwatj. I had heard that he worked well with Yolngu and was committed to capacity building. A biomedical researcher, he was famous for his applied research, and working closely to build research capacity in communities so that research could be directed and owned locally.
Richard was chairing a session with some Papua New Guinean researchers he had invited. His session also covered quit smoking programs developed and run by community workers, and sessions on building research capacity in the field. It was a cosmology away from the main conference, not necessarily with any better answers, but with a genuine interest in translating research into real life. I instantly warmed to Richard.
At the main conference, Annie was to report on the Galiwin’ku pilot study on scabies as the program was past its halfway point. I was there early. From the day I learned about the Galiwin’ku trial I had asked in vain to see the results of the study I had been directed to replicate.
I scribbled notes as Annie spoke. In the first six months scabies rates had halved from four to two per cent. Since then rates had spiked due to an anomaly caused by a crusted scabies patient. There had, however, been a real reduction in the rate of strongyloides: positive tests in the population from 21 down to six per cent.
But, anomaly or not, the community now had more people with scabies than it did when NSMR launched their pilot and I still couldn’t justify expanding the program to the whole of east Arnhem.
That afternoon I bumped into Graham and Annie during a lunch break and congratulated Annie on her presentation. I mentioned that I had been speaking to Oliver, the regional environmental officer, about flying a few motivated community workers from neighbouring communities to Milingimbi to see how Elizabeth ran healthy skin days in her community.
I had heard about Elizabeth from a number of people working on the ground. In 2010 Oliver Sinclair and Jane Page, a public health coordinator who lived in Milingimbi, helped run a healthy skin day that had brought the whole community together. It had been led by Elizabeth and Judy, a community worker. The Milingimbi event had been seen as a success by many in the community, especially since it was community-organised.
Elizabeth suggested to Oliver that this year he organise for one or two community workers from regional areas to join her to learn how she did it. She hoped they would be inspired to replicate the program back in their own home towns. I was really excited that Elizabeth wanted to train healthy skin day leaders.
Graham and Annie weren’t. ‘That sounds like a serious case of humbug.’
Asking for what you want is acceptable in Arnhem Land but when it becomes burdensome, be it too much money, too many lifts, too much food, to stay too long, too many gifts . . . it is called humbug.
‘We’d fly an organiser from each community out to Milingimbi for the few days leading up to the healthy skin day. They could help Elizabeth, take her lead, and stay for a debrief afterwards. Maybe throw around some ideas, organise support teams for future healthy skin days, that kind of thing. We fly out people from Darwin to work on healthy skin days all the time. Why not regional community workers?’ I asked.
‘And how are you going to decide who gets to fly around on that little junket?’
‘Well that wouldn’t be my decision. Whoever was motivated to organise their . . .’ I started, but Graham was already reaching past me to shake someone’s hand and he and Annie took their leave
.
I pondered the meaning of humbug. I felt as though the NSMR team thought I was naïve and I would squander Sam’s hard work funding frivolous things, such as flying community workers around and engaging in endless community consultation. But my reading was that a focus on meaningful partnerships with community was the most robust driver of sustained results. And, even if it did not work, surely leaders like Elizabeth had the right try things their way.
The conference hall was buzzing with the post-presentation networking of hundreds of people from all over the country. All of us were flown here for a fully catered conference in tropical Cairns, and there was not a single Aboriginal person in sight.
11
OUR NEW HOME
Tanya had moved to Sydney temporarily and, with the children in tow, was postering, handing out flyers, contacting media and making endless phone calls to get the Claude Stein vocal workshops off the ground.
When I flew back to Sydney a grateful relief settled over Tanya. But not for long. Less than an hour after I had arrived my face was darkening.
‘We should be up in Arnhem Land. Is it too late to pull out? How much money are we going to lose, anyway?’
Tanya couldn’t bear to tell me her worst projections. Right now all she wanted was to hand it over to someone else. But I was already dealing with too much myself.
The following morning I grabbed a wad of posters and headed for the door, but Tanya stopped me.
‘Thank you. And . . . don’t measure success by the number of posters you get up. If you connect with people . . . that’s what will make the difference.’ I spent the next few days postering and dropping off pamphlets in cafes all over Sydney.
There were two weeks left until Claude touched down in Australia and sales had been trickling in steadily until part way through my two-week visit. Then for nine days not a single ticket sold. But there was nothing else to do now, Tanya had paid Claude in full, bought his return airfare and paid for his accommodation and venues. The show would go on even if there were only a handful of people in the workshops. Every day brought disaster closer but it also brought closer the end of the disaster.
A Doctor's Dream Page 7