The crucial factor missing in administering health services to Aboriginal people from remote communities is the absence of individual responsibility for their own health and of parents taking responsibility for the health of their children. This is why is there is a health crisis in remote communities.
In remote health centres every consultation is a major event. Here are six examples of how difficult it is to administer to people who do not take responsibility for their health.
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A woman approaches the local health centre and asks when her next pap smear is due. She had her last one interstate at a small community near a major town and thinks she had a positive result. According to the National Cervical Screening Program, women are advised to have pap smears every two years, and more frequently after a positive result. She doesn’t know the phone number of this small community or how to spell it or the date or month of her last pap smear. The nurse spends a considerable length of time trying to find the name and phone number of this community. Eventually she contacts the hospital in the major town and is given the name and phone number of the health centre at this small community, about 100 kilometres away. The staff at the hospital forget to inform the nurse that the health centre at this little community is only open three mornings a week.
After about a week, the nurse finally manages to get in touch with a staff member who works in the health centre at this community. This staff member tells the nurse that she doesn’t have the woman’s file with her and that it is back at the hospital in the major town. She assures the nurse that she will get back to her with the results and date of the pap smear.
After about two weeks the nurse realises that she hasn’t heard from the staff member, and contacts her again. But the staff member is on leave and her locum doesn’t know anything about the woman or her pap smear or when the next one is due. The nurse is so overwhelmed with work that she forgets to follow up this information and the patient falls through the cracks. In an urban surgery a fifteen-minute consultation would be allotted for what has taken many hours of work and left the issue unresolved.
A mother brings her nine-month-old son to the health centre, as he is febrile and coughing. She also has her five-year-old daughter with her. The family is new to the community and has come to live with a relative who is married to a local man. The nurse asks her whether the children’s immunisations are up to date. She is unsure. She thinks her daughter had an injection in Tennant Creek where they had been living for the past three years, but she can’t remember what it was for.
The health centre is full of people waiting to be seen and the nurse cannot spare any time to chase this up. She makes a mental note to contact Tennant Creek later in the day, when she hopes to have a quiet moment. She tells the mother to come back in a few days once she has a chance to contact Tennant Creek.
The nurse ends up having a busy day and forgets to contact Tennant Creek about the children’s immunisation status. About two days later she remembers and contacts Tennant Creek. They give her the information she requires.
Two weeks go by and the mother hasn’t returned to the health centre to find out whether her children’s immunisations are up to date. The nurse asks one of the Aboriginal health workers to find the mother and bring her to the health centre. She can’t be found. The nurse is so overwhelmed with work that finding the mother is put well down on her list of priorities.
In an urban setting most mothers would know the immunisation status of their children and make the necessary appointments when they are due. This rarely occurs in remote Aboriginal communities.
A nurse is called out at 2 a.m. to attend to a sick girl aged three. The girl has a dangerously high temperature. After examining her, the nurse concludes that she has a chest infection and requires antibiotics via an intramuscular injection, which she administers according to the standard treatment protocols set out by the Department of Health. She gives the child analgesics to lower the temperature and gives the mother some to take home with her. She asks the mother to bring the child to the centre the next day for follow-up and for a second dose of antibiotics.
By lunchtime the mother hasn’t returned and the nurse is concerned. Later that day she sees the mother and child in a vehicle on their way out of the community. She approaches the vehicle and asks the mother why she hasn’t brought the child back for follow-up and further treatment. The mother replies that she is off to the local roadhouse, about 300 kilometres from the community, for alcohol (this community has stringent alcohol restrictions which have been imposed by the local council).
The mother is anxious to leave the community to get her grog and shouts at the nurse for stopping her from leaving. Finally she agrees to return to the health centre, where the nurse examines the girl and administers another dose of intramuscular antibiotics. She gives the mother some more analgesic medication and tells her the girl should be taken home and should not leave the community until her condition has improved. The mother ignores this and leaves for the roadhouse with her daughter.
A nurse is called out at midnight to attend to a woman who has been brutally bashed by her husband. She is six months pregnant with her first child. In a jealous, drunken rage, her husband accused her of talking to another man earlier in the evening. She is bleeding profusely from a head wound caused by a partial avulsion of her scalp. She has also sustained a partial tear to an earlobe. She is bleeding copiously from her vagina. Her husband has kicked her repeatedly in the abdomen. Her wounds are treated, she sustains a miscarriage and is evacuated by air ambulance to the nearest hospital that night.
Early one evening, a woman leaves her newborn son at her sister’s house while she goes to the local pub with her husband. Her sister decides to go to the pub too and leaves her nephew on the ground outside, on his own, and leaves the house.
A few hours later, the mother and grandmother bring the baby into the health centre with a severe tear to his scrotum exposing his testicles. The injury was caused by a puppy that had torn off the baby’s disposable nappy while he was lying alone on the ground. While the nurse is assessing the damage to the little boy, his mother and grandmother start brawling, hampering the nurse in her duties. She calls for backup and her colleagues separate the feuding pair.
The baby needs to be flown to hospital for treatment. None of his family volunteers to accompany him to hospital. It is now late at night and health staff drive around the community looking for someone to escort the baby to hospital. Finally someone is found and the child is flown out that night. On hearing what has happened to his son, the father picks up the puppy and kills it with his bare hands.
A woman is repeatedly evacuated from a remote community health centre to hospital with multiple fractures to the bones in her hands and burns to her vagina. On each of these occasions, her husband, in fits of jealous rage, has put burning sticks into her vagina and broken the bones in her fingers.
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These six situations are not unique or far and few. They are everyday occurrences in many communities, and there are thousands of similar examples which to health workers gradually become overwhelming and disheartening.
What a positive outcome takes
I first met Deborah (not her real name) in about 1998 when I was working as a Remote Area Nurse in the Northern Territory. Deborah had encrusted scabies, a contagious skin condition prevalent in some Aboriginal communities. The scabies mite burrows under the skin, causing extreme itching and discomfort. It is spread from person to person via skin-to-skin contact and if it is not treated, constant scratching can lead to infected sores. Frequent bouts of infected scabies are thought to be responsible for renal disease from repeated staphylococcal skin infections.
Deborah can only be described as a prickly character. She was difficult to get to know, difficult to treat and suspicious of any new staff members. She refused to have routine treatments such as pap smears, immunisations and the like. On one occasion she accompanied her husband to the health centre when he sought treatment for a sexually transmitted disease. She refused to be either tested or treated, insisting that she was celibate.
She was a frequent visitor to the health centre and always asked for pawpaw cream and bandages, which she claimed soothed her itching skin. She always presented with bandages on her arms and legs so staff couldn’t assess the condition of her skin, and she usually had an excuse for not removing the bandages. She would always turn up right on lunchtime when she knew the health centre would be closing for lunch and staff would be hurrying out the door. Staff usually complied and gave her whatever she wanted because she was so difficult to deal with. On occasions staff would try and encourage her to use Eurax cream, the prescribed treatment for scabies, but she refused, insisting that it irritated her skin.
This went on for a while until a staff member noticed that Deborah was presenting to the health centre more frequently and requesting more bandages and pawpaw cream than before. We decided to provide her with a set amount of bandages and pawpaw cream every week. She was infuriated and became more difficult and abusive.
We discussed our concerns with the District Medical Officer (DMO) who visited the community fortnightly. He suggested that we give her as much pawpaw cream and bandages as she wanted, and to mix Eurax cream into the jars of pawpaw cream. We tried this and Deborah refused to use the pawpaw cream, reiterating that Eurax irritated her skin.
One day she brought her adult daughter Magdalene to the health centre covered in blood from a wound. She was given a towel, soap and clean clothes and went to have a shower to wash off the blood before she could be sutured. As she was taking an inordinate length of time in the shower, one of the nurses went to the bathroom to see whether she needed any assistance. She was shocked to see that a large part of her body was covered in scabies. The actual extent of her mother Deborah’s scabies then became apparent to staff. Which other family members had become infected?
This finally brought matters to a head. We decided that we needed to assess the extent of Deborah’s scabies, insist on appropriate treatment and screen the rest of her family. We also decided that she was to receive no more pawpaw cream and bandages until she was assessed by the DMO on his next visit to the community. We thought that if we denied her requests for pawpaw cream and bandages, it would put her in a position where she had no other option but to see the DMO.
When this information was relayed to Deborah, she was upset. She continued her regular visits to the health centre, demanding bandages and pawpaw cream, saying that if we gave them to her this time, she promised to see the DMO on his next visit. She singled out one of the nurses, threatening to kill her if she didn’t give her any more pawpaw cream and bandages. She also approached the local council to see whether they would sack this nurse, telling them she was a rubbish nurse. We resisted her demands for more pawpaw cream and bandages and waited for her to come and see the DMO.
On occasions, Deborah would accompany people to the health centre after hours for treatment. Staff noticed that after these occasions the pawpaw cream was always missing off the dressing trolley. They realised that Deborah was taking the pawpaw cream after hours when staffing levels were low. After this, staff ensured that all pawpaw cream was locked in the pharmacy after hours.
After a few weeks Deborah came to see the DMO. By this time she was barely on speaking terms with any of the staff. She shouted at the DMO and accused the staff of tricking her into seeing him, which was probably true, but we felt that we had no other option.
Fortunately for us, a new Aboriginal health worker by the name of Gail had just started work at the health centre. She and Deborah had known each other at another place and were happily re-acquainting with each other. The DMO recognised this as a sign from above, approached Gail and asked her whether she would be willing to work one-on-one with Deborah and her family. Deborah agreed to work with Gail on scabies treatment and prevention and the long road to recovery commenced.
Gail and the DMO researched the subject of encrusted scabies and worked out a plan, which they discussed with Deborah and her family. First, Deborah’s house needed to scrubbed and cleaned from top to bottom and all the clothes and bedding washed and aired. Second, Deborah was to take oral medication for her condition as it was so severe, and the rest of her family treated with Eurax cream.
Gail ordered neat bleach in industrial quantities and organised a day with the family to start on the agreed plan of attack. The DMO organised a script for the oral medication and Gail and Deborah decided on a day suitable to everyone to commence the cleaning.
Gail was let down many times. She would go to Deborah’s house as planned and the house would be empty. The neighbours called out that Deborah and her daughters were off playing cards somewhere. Gail would return to the health centre disheartened and angry, vowing to have nothing more to do with Deborah and her family.
This went on for a few weeks until one day Gail, Deborah and her daughters finally managed to meet at the house on a day that suited everyone and the cleaning commenced. It took the best part of the day. Gail took photos of Deborah’s arms and legs that day so she could compare the results before and after treatment.
After a few months on oral treatment, Deborah was amazed that her skin looked almost normal. Gail took some “after” photos and showed them to Deborah, comparing the two sets of photos. Deborah approached the nurse who she had threatened to kill, thanking her for her perseverance and acknowledging that she was a good nurse after all.
While all this was going on, one of Deborah’s daughters had a baby boy, Benjamin. After a few months, one of the nurses noticed that he too had become infected with scabies. He was losing weight and becoming malnourished. Eventually he was sent to Darwin Hospital for treatment. Hospital staff were made aware of Benjamin’s home situation and were reluctant to send him home until the situation had improved. It was pointless sending him home until he was well and the whole family was free of scabies. After about three months, Deborah and her family were free of scabies, their house was clean, and little Benjamin was able to go home.
There are times when Deborah and her family have to be encouraged to clean the house and its contents and to seek treatment early. Unfortunately, as in most health centres in the Territory, staff turnover is high and most of the staff who were involved in the care of Deborah and her family have left. Here, as in many other cases, continuity of care at the primary health care level is sadly lacking. Deborah and her family no doubt will go through the same process again and again.
Overall community dysfunction
The state of remote community health is part of the overall dysfunction developed in these communities under the failed policies of the past forty years. Under these policies remote Aboriginal people as individuals and as communities group have been exonerated from taking responsibility for their lives. Government policies developed as a reaction to injustices of the past have cultivated a dependence on government and other services. Governments have removed the obligation and need for action and effort by people to change their own lot.
The situation is dire. Policies that replicate the past by not addressing personal responsibility will inevitably result in a continuing crisis. Without changing the mindset of individuals and community groups to accept personal responsibility as the prime component of health management, the experiences of the past will continue. Community groups have a particular role in supporting an individual to maintain personal safety, the safety of their children and of older family members.
Community Controlled Health Centres
In my experience, Community Controlled Health Centres as conducted under current models are not an answer. There is no expertise within controlling committees to enforce individual responsibility. Committees are not in a position to enforce policies to family members.
The change in emphasis required is dramatic and cannot be achieved without being driven from within the community. To be effective, Community Controlled Health Centres need to start from a position of personal responsibility, and need to set policies accordingly.
Policies should address the small things first: personal hygiene, band-aids for minor cuts, and the individual, without outside help, should deal with sores, analgesics for headaches and so on. Compliance with medication has to be emphasised as an individual responsibility. Likewise matters such as children’s immunisations, regular health checks, antenatal care, pap smears, and keeping appointments with specialists, all take a degree of personal responsibility. Requiring this personal responsibility should be an integral part of a Community Controlled Health Centre.
Other issues that affect an individual’s ability to take responsibility for their own, their children’s and elderly family members’ health require Community Controlled Health Centre involvement in the wider public arena. These include violent assaults and the sexual abuse of women and children.
Government departments have failed to understand the gravity of the situation. Long-term health implementation practices in remote Aboriginal communities have done little to emphasise and insist that individuals must take ultimate responsibility for their own health. We all need help when we are ill; what comes with this help is the expectation that as individuals we then follow the advice given by health professionals, take medication and follow their instructions to regain and maintain our health.
Imparting responsibility for health to the individual is a major task that has been missing from government policies for far too long. Overcoming the situation will take resolve and determination. While the prime input has to come from within communities (Community Controlled Health Centres as the leader), a strong commitment from government is essential.
Changing the mindset in communities is not the only task. All involved health professionals and government departments need to accept that individual responsibility is a pre-eminent factor in the provision of health services. Failure to reinforce this message will result in a repetition of the past and largely negate the effect of otherwise well-structured programs.
Bubbles Segall was born in South Africa and moved to Australia in 1974. She moved to the Northern Territory in 1976 where she worked for thirty-three years as a midwife, as a Community Health Nurse and as a Community Development Officer in Darwin and in remote Aboriginal communities.