||F Lehmann* A Hedges** B Hunt***
*Rural consumer representative,
Radiation Therapy Expert Reference Group,
Radiation in Cancer Care Project
**Association of Prostate Support Groups
***Breast Cancer Support Service
Westmead Hospital, Westmead, NSW
Problems of access – geographical, financial, social or psychological – may deter the patient from undertaking what would be considered the treatment of best practice for their condition. This is particularly the case for radiation therapy, with its need for centralised services in the midst of a large country with a widely dispersed population. Despite government promises of equity in health care for all Australians, little has been done to improve access to city radiotherapy centres for rural patients. This paper will concentrate on the extra barriers that rural patients face in making a decision about the treatment of their cancer.
According to the 1996 census, 29% of Australians live in rural or remote Australia. Rural residents are classified among the lower socio-economic sections of Australian society, and with more than 50% of cancer patients aged over 65, a large proportion of rural cancer patients are likely to be on pensions or lower fixed incomes. Even minimal extra expenses associated with opting for treatment by radiation may become a major impediment.
For those still in the workforce but likely to be earning lower incomes than their metropolitan counterparts, the seven weeks of lost income associated treatment – plus travel and accommodation expenses – can be equally burdensome, and alternative methods of treatment may appear more attractive.
For mothers with families, barriers may relate more to social separation than financial problems, but are no less real – as evidenced by the greater proportion of mastectomies performed in rural areas.
Interestingly, these problems are not necessarily lessened for rural patients by the establishment of regional radiotherapy units. Rather, the hub to which patients must travel is shifted, with extensive travel and long-term accommodation away from home still required by many patients.
Social problems of access
Long periods of separation from personal support systems would obviously affect the treatment choice for some patients. The problem of separation is aggravated because government-funded patient accommodation and travel schemes (PATS) do not contribute towards carer/spouse expenses to accompany the patient unless physical problems require it.
Particular study is required to assess the needs of Aboriginal and Torres Strait Islander peoples in this regard.
Transport to urban cancer treatment centres
Most country towns have little or no public transport suitable for patient use. Several transport schemes are funded to help rural patients access health care, but none of these are relevant to the needs of radiotherapy patients, which require access five days a week over a seven week period. Even the most willing of families is unlikely to be able to provide private transport over a seven week period. The current options for patients include a private car, taxi transport subsidy for short distances and community transport programs.
Accommodation needs of rural patients in the city
Although most accommodation is basic in quality, and is often in disused nurses’ homes attached to the treating hospital, most rural patients speak highly of their accommodation, and satisfaction appears to be based on the informal networking between patients that occurs in the community areas of the accommodation.
This is particularly important for those patients from the smaller rural towns, for whom it may be the only support network they will encounter during the course of their disease.
Boondi Williams, an Aboriginal Health Worker from Alice Springs commented that many city residences are inappropriate for the needs of Aboriginal patients, and radiotherapy is often refused by her patients for this reason.
Financial costs of accessing treatment
Government patient assistance schemes are designed to assist rural and isolated people who need specialist treatment, which is not available locally. They are administered by the local health services. The guidelines differ from state to state. They are based on a system of partial reimbursement of travel and accommodation expenses for those patients who live more than a specified distance from the treatment centre.
PATS are designed to meet the needs of patients with general medical problems, and except the South Australian model, none meet the needs of radiation patients who have to make many visits for treatment and stay away from home for extended periods. A number of difficulties have been identified:
- Full “up-front” payment of expenses by the patient is required, before claim for reimbursement can be lodged.
- A non-reimbursable contribution of $30-$35 per visit is required in each state, which appears discriminatory to those undergoing radiotherapy.
- Long delays frequently occur in reimbursement of expenses, placing unnecessary financial burden on patients.
There is no reimbursement of the expenses of accompanying carer unless the carer is attending on medical grounds.
It is essential that all PATS consider the special – and unavoidable – requirements of treatment by radiation, and make provisions within their guidelines so that all rural patients may access treatment by radiation should it be recommended.
Patients frequently comment about the lack of printed material available to them to help make the decision whether or not to undergo radiotherapy. Pamphlets are not available in GPs and surgeons’ waiting rooms, but rather in the waiting rooms at oncology centres where only those patients who have already decided in favour of radiotherapy have access.
Such material must also be suitable for those from multicultural backgrounds, or those who have trouble with the printed word. In 2001, The Cancer Council NSW expanded its Cancer Information Service to include specific services for Arabic, Cantonese, Mandarin, Greek and Italian patients.
Surveys also showed that more information is needed about the available help with transport and accommodation costs, with only 40% of breast cancer patients making any claim for available subsidies and more than 80% reporting a lack of information on what help is actually available to them.
Education of nurses and general practitioners
It is a regular consumer complaint that GPs seem unaware of what treatment by radiation actually involves and what side-effects can be expected. Consumers also complain that GPs appear to be unaware of the recent advances in radiotherapy. This is of particular concern to members of prostate associations.
Wendy Hyde, a Rural and Remote Oncology Nurse, commented that she is often called upon to explain to patients just what treatment by radiation involves, and has found a lack of printed material suitable for her needs.
Voluntary and charitable organisations
Excellent organisations exist with the aim of lessening the burden of city treatment for rural cancer patients. CPAS (Cancer Patients’ Assistance Scheme) in NSW is one such example. CPAS runs its own city accommodation complex, Jean Colvin Hospital, which supplies support, inter-hospital transport, help with side-effects, and nearby accommodation for family. Its members also raise money to help rural patients with the expenses involved.
CPAS branches in country towns often help with the “up-front” expenses of travel, and are then reimbursed themselves, which can make the difference between treatment being accessible or not. However, CPAS does not exist in the majority of towns, and its existence in any town at any time depends upon the benevolence and volunteer spirit of the townsfolk.
Rural consumer representation
Although rural patients are the most disadvantaged when it comes to accessing treatment and have the most need to lobby for change, their involvement at decision-making levels of government, professional, support and advocacy groups is limited by the same problem of access.
Attendance at meetings is expensive in terms not only of travel and accommodation, but also in terms of the time lost from work. It is important that funds are made available to allow rural consumers to have a voice on cancer issues.
Although treatment by radiation has become theoretically more accessible to rural patients with the establishment of fly-in/fly-out consultant services, the difficulty of accessing urban treatment centres still constitutes a major (and often insurmountable) problem for many rural Australians.
It is a matter of great urgency that all PATS schemes are modified to accommodate the specific requirements of treatment by radiation.
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