A Doctor’s Dream is about a microscopic mite, a huge health issue and the fraught nature of ongoing injustices towards Aboriginal people in Australia. It is a very Australian story. Both white and Aboriginal people are tired of the same intractable problems and tired of announcements of quick fixes that never work. In this book Dr Buddhi Lokuge and Tanya Burke offer a way through this mire, but only through hard, time-consuming commitment and respect.
Scabies is a mite that is a scourge in some outback Aboriginal communities. It causes itching which leads to skin infections in the tropical environment of northern Australia. Some people do not have any natural resistance to the mite which leads to huge colonies living on their skin causing the disfiguring and serious health condition known as crusted scabies.
The chronic skin infections caused by recurrent outbreaks of scabies can lead to abscesses and in some cases, amputations. It is the underlying cause that has led to remote Aboriginal communities in Australia having some of the highest rates of kidney and rheumatic heart disease in the world. The constant sores on a child can give the appearance that the child is suffering from neglect at home. Lokuge and Burke explain that this health condition can be horribly misunderstood by the authorities and lead to the removal of the child from their family. Despite what we have learned from the Stolen Generations, removal of children from Aboriginal families is still occurring.
Dr Lokuge drew on his experience working for international medical humanitarian organisation, Médecins Sans Frontières to design and deliver a program to eliminate scabies in Arnhem Land. The not for profit organisation Lokuge worked for, One Disease, offered him the freedom and support to devise and implement a solution that enabled Aboriginal people to tackle the issue. Their overall management and support of Lokuge’s work is a crucial element in the success of the program.
Typical of any disease that is largely absent in the West, scabies suffers from the disinterest of pharmaceutical companies, lack of research funding and the absence of serious will and funding by wealthy governments to tackle it. Such diseases are classified by the World Health Organisation as ‘neglected tropical diseases’. As Lokuge and Burke point out, if white people caught scabies it would not be neglected, it would be treated as an emergency.
…the scabies program was never going to be just about scabies. There is no neutral ground in the Aboriginal health space.
Lokuge and Burke moved their young family to Arnhem Land and Lokuge spent considerable time getting to know the community and patients. He went fishing with them, and spent considerable time outside the clinic chatting with people. He could see the cynicism of the non-Aboriginal people waiting for the latest ‘do-gooders’ to give up and leave, the lack of interest by patients in a treatment program that hadn’t worked for them in the past.
Lokuge saw the horrendous housing conditions caused by lack of funding and bureaucracies that were focussed on adhering to labyrinthine procedures. Many health issues in Aboriginal communities are caused by unhealthy housing. Relevant to this issue but not mentioned in the book are the findings of the another not for profit organisation, Health Habitat. Through their work on Aboriginal housing they have found 70% of the housing repairs they have carried out in Aboriginal communities are caused by lack of routine maintenance by the owners of the houses, not the residents, and 21% by things built badly in the first place (‘Why the Houses Need Fixing‘).
Like in the case of head lice, scabies needs to be eliminated from bedding, but the washing machines that are designed for western urban areas are not tough enough for outback Australia. Lokuge is yet another health worker in Aboriginal Australia to recognise that reliable washing machines are crucial for Aboriginal health (read about the remote area washing machine problem on the Health Habitat website). But as Lokuge and Burke point out in this book, it is easy to identify the problems; the issue is finding and implementing workable solutions.
Everybody spoke about community consultation and engagement but so far that part hadn’t happened… nobody knew what the people who suffered from scabies wanted to do about it.
Lokuge’s work was criticised by other people in tropical health research. In response to one of Lokuge’s reports a medical researcher wrote, “I heard a lot of platitudes about community engagement and capacity building… but we have lots of experience about such talk being used as excuses for inaction”. Tanya Burke didn’t accept that, “I have had lots of experience of such action being used as an excuse for a lack of consultation”.
The reader sighs. It is the same old story repeated despite the fact that we supposedly now understand that nothing is going to improve unless Aboriginal people are allowed to develop solutions and implement the solutions themselves with adequate resources provided. Lack of involvement and consultation with Aboriginal people in addressing their health needs is a fundamental issue that the Australian government’s Close the Gap commitment seeks to address. In fact the Close the Gap preamble says that it is “crucial” that “Aboriginal and Torres Strait Islander peoples are actively involved in the design, delivery, and control” of their health services. Lokuge and Burke put this commitment into action, but sadly it seems that there are still too many people working in government-funded health services who are working in the old-fashioned patronising top-down mode of imposing solutions from air-conditioned city offices.
As the locus of power moves from communities to boardrooms, the gap between actions and their consequences grows as well. And this is where well-meaning intentions can run off the rails and do harm.
Reporting to donors and other supervisors is necessary for accountability, but Lokuge and Burke made sure they remembered that their “only true bosses” were the Aboriginal communities and patients they were serving. They had to be careful not to succumb to the chronic disease of western management – the demand for short-term results.
A Doctor’s Dream is a lesson in public health and management written in a memoir style. This is a good approach as it conveys the human nature of the story. Public health is a social science. The science is only going to work if the interaction of people is working. This is at the heart of the failure of too many public health programs in Aboriginal communities. Writing a public health book as a memoir allows the reader to understand that if a program is going to succeed health workers, patients and the community in which they work are all important agents in the success of a public health program. This memoir allows the reader to see the problem of depression among remote area health workers, ground down by years of public health programs that don’t work and supervisory organisations not listening to them. Early on I wondered how Lokuge’s and Burke’s marriage was going to survive the challenges this type of work was throwing at them. The memoir also demonstrates how important it is to first spend time learning about the culture of a community, listening to patients, reflecting on they have to say and including what has been learned through this process in any treatment program.
When I first picked up this book I was troubled by the absence of an Aboriginal author. No Aboriginal reviewers of the book were quoted in the blurbs either. The lack of an indigenous author was explained in the acknowledgements in the back of the book. An elder had been invited to co-author the book but the stigma surrounding the disease is still great so they declined. We would feel the same too if we were known as the family that continually caused an entire school population to be ridden with head lice. Names of places and people have been changed throughout the book to preserve anonymity. For years patients and families with chronic scabies had been labelled as “non-compliant” by health workers and blamed for poor hygiene by their community. The fault did not lie in lack of cleanliness. The existing procedures and programs for dealing with scabies did not work. Sadly this is another example where the victims were blamed for their plight.
The memoir becomes too “I” focussed at times when the narrative revolves around Lokuge’s feelings and needs without considering the experiences and feelings of those around him. However, when the book focuses on the communities he works with the reader is absorbed. One of the highlights of the book is the story of Rukula who suffered from crusted scabies. Rukula was an important part of finding a solution and persuading others of a treatment plan. Her story is inspiring and the way that Lokuge listened to the treatment ideas that Rukula and other Aboriginal patients suggested is a great model for health practitioners to follow. Today in The Guardian you can read an extract from the book about Rukula’s story.
The other missing voice is that of Tanya Burke, Lokuge’s wife. She is the co-author but as clearly stated at the beginning of the book, A Doctor’s Dream is written from Lokuge’s perspective. Tanya Burke was an important part of the project. She wrote up the project plan and the discussions that Lokuge had with her about the work were critical at times for ideas and to maintain focus. Having some experience myself in media work for an organisation involved with development projects, I respect Burke’s understanding of the role of publicity in a nascent development project. Not many media professionals display this thoughtfulness. I would have liked to hear about this project from her point of view as well.
At times Lokuge and Burke use too many acronyms. Those passages where acronyms are used excessively read like a government report. Acronyms remove the impact of words and with the plethora of acronyms in our lives the authors run the risk that the reader immediately thinks of a meaning for an acronym that is completely different to that intended by the authors. Many Australians would first think of the sugar they use in their kitchen when they see the acronym CSR, not corporate social responsibility. Australia’s Therapeutic Goods Administration is not mentioned much in the book so why introduce the reader to the TGA acronym for it?
It is the subject of A Doctor’s Dream which will appeal to the reader. This book will offer different things to different people. It should be of interest to health professionals who are striving to address the appalling health issues facing Aboriginal Australians. It should appeal to anyone living in outback Australia who is grappling with issues in their community. It should interest anyone who wants to learn about a better way to address Aboriginal disadvantage. Ultimately this book demonstrates that it is possible for Australians to take a step to addressing the injustices that have damaged this country for too long.
The scabies program is a long-term initiative and is continuing today. You can find out more by visiting the authors’ website, EveryVoiceCounts and the website of the organisation that initiated and funded the program, One Disease.
A review copy of A Doctor’s Dream was supplied by the publisher, Allen & Unwin.
The story really DOES appeal! How do scabies and chronic skin infections cause kidney disease?
The Real Person!
The Real Person!
The problem is that infections enter the blood stream and cause further havoc in the body. There are more details about crusted scabies here, including articles from medical journals.
Sounds like you should read the book!
A very detailed and reasoned critique. Thank you!