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Results of the CIA study
Results of Chronic Illness Alliance Survey in Rural & Regional Victoria
- 29% lived in the Barwon - South Western region, 26% in the Loddon-Mallee region, 14% in each of the Grampians, Hume and Gippsland regions.
- 381 households participated in this survey. They consisted of 1,626 individuals, 507 of whom had a chronic illness and 1,119 who did not.
- 72% of households had one chronically ill person in the household; 23% had two chronically ill people in the household.
- 24% of the people with chronic illness were aged less than 16 yrs, 29% were aged 17-45 years, 22% 46-60 years and 22% 61-75 years.
- 25% of people had more than one chronic illness. Of the more strongly represented illness groups, 12% had diabetes, another 12% had Crohn's disease and/or colitis and 9% had cystic fibrosis.
- 65% had access to a health care card.
- Only 35% had access to bulk-billing by their GP.
- 41% of households had a gross annual income of $26,000 or less, 37% earned between $26,000 and $52,000 and 21% earned more than $52,000.
Health Care Card
- 65% had access to a health care card.
- 60% used their Health care cards either weekly or fortnightly.
- 93% thought their Health care card was either extremely important (73%), or very important (20%).
- Of those households on incomes of less than $26,000, 88% had access to a Health care card, 66% used it regularly and 98% thought it was extremely or very important.
Cost of Medications
- 86% of households purchased medications covered by PBS, spending from $1 to $850 per month.
- The average was $52 per month and the most commonly stated amount was $20.
- 10% of households spent more than $100 on PBS medications in an average month.
- 67% of households purchased medications not covered by PBS spending from $3 to $1000 per month.
- The average spent on non-PBS medications was $62 and the most commonly stated amount was $20.
- 10% of households spent $130 or more per month on non-PBS medicines.
- 13% of households said the cost of their medications caused them major financial problems. This rose to 20% for those with incomes less than $26,000.
- 38% of all households said it caused them moderate problems.
- 48% of all households said it caused them minor or no problems.
Changes to the tax and welfare system
- 66% reported that changes to the tax and welfare system including GST had a negative affect on their household finances.
- 23% said it had made either a big (14%) or huge (9%) difference.
- 50% reported a noticeable difference.
- When asked if they were satisfied with the amount of government assistance they were receiving, 54% or over half said they were not. The most dissatisfied group were the non-Healthcare card holders with 75% saying they were not satisfied. Low income households on the other hand were more forgiving with only 48% voicing their dissatisfaction.
- Non-Healthcare card holders predominantly wanted better access to a Healthcare card and more assistance with the cost of their medications and complementary medicines and supplements.
- 60% of households thought information about government assistance schemes was either difficult to get hold of (30%), very difficult to get hold of (13%), or wouldn't know where to start (17%).
Medical Expenses [out of pocket]
Households spent between $5 and $1000 on GP visits in the last six months. The average amount spent per month was $19 [this was true of both Healthcare card holders and non-Healthcare card holders]. Households with incomes less than $26,000 spent an average $16 per month while higher income households [above $52,000] spent $21 per month on GPs.
This may be explained by much higher rates of bulk-billing for low income households [46%] compared with higher income households [19%].
Households spent between $45 and $1000 on specialists visits in the last six months. Low income households who visited specialists spent an average of $25 per month, non-Healthcare card holders $27 and Healthcare card holders $24.
Households spent between $6 and $6,000 on treatment and tests in the last six months. Low income households and non-Healthcare card holders who received treatment or tests spent an average of $47 per month, higher income households $44 and Healthcare card holders $38.
When it came to hospital stays there was a more noticeable difference in the average cost for non-healthcare card holders who had been hospitalised - $101 per month - compared to other groups such as low income households $42 per month, healthcare card holders $60 and higher income households $66.
While a number of households did not visit doctors, undergo tests or stay in hospital, all households underwent some form of therapy whether it was physiotherapy, speech therapy or homeopathy. Low income households and Healthcare card holders spent on average $6 and $9 per month respectively. Non-Healthcare card holders and higher income households spent an average of $17 each per month.
Expenditure on medical equipment and aids was another universal cost. It included a wide range of devices from diabetic equipment, walking sticks and incontinence pads to exercise equipment for people with obesity and cystic fibrosis. Monthly expenses ranged from $19 [low income households] to $44 [higher income households]. Healthcare card holders and non-Healthcare card holders spent much the same - $31-2.
Allied health services such as dental, optical, dietician and podiatry were grouped together and once again there was universal usage. The lowest spenders were the low income households and the Healthcare card holders incurring $8 and $9 out of pocket expenses respectively: next came the Healthcare card holders at $17. The biggest spenders were the higher income households with $25 each month.
Travel Costs: Over half of all respondents [57%] traveled to Melbourne for treatment or appointments incurring a number of additional expenses. While the majority [70%] of these households traveled once every two months or less, the remainder were making far more frequent trips with 17 households traveling monthly to fortnightly and another 9 traveling more frequently again. In addition to coming to Melbourne, thousands of miles are regularly traveled to regional medical centres, to the nearest doctors and into towns to attend appointments and to collect perscriptions. The associated costs are shown below.
Petrol: All groups averaged spending between $37 and $43 per month on medical travel.
Parking: All groups spent $7 a month on parking.
Meals: Because long distances are frequently traveled, meals are required and these are expensive. Even if meals are taken in the car or not needed, coffees and snacks purchased along the way add up and this is reflected in the average cost per month of between $20 and $28 reported by each of the various groups.
Household costs
Respondents were asked to estimate the additional household costs they incurred as a direct result of their illness. They reported the following:
Telephone costs: 41% of respondents reported additional phone costs. The average cost reported by the various household groups - low income, higher income, Healthcare card holders, non-Healthcare card holders - ranged from $28 to $34 per month.
Energy costs: 43% of respondents reported additional energy costs. The average cost reported by the various household groups ranged from $37 to $51 per month.
Cleaning costs: 22% of respondents reported additional cleaning and gardening costs. The average cost reported by the various household groups ranged from $48 to $66 per month.
House repairs and appliance servicing: 7% of respondents reported that they had needed to make substantial alterations and modifications to their homes and in some cases, had even had to move house incurring huge additional expenses. Some people spent only hundreds but many others had spent thousands. Repairs and servicing of appliances was another expense that relatively few incurred [10% of households] but that added to the burden of having chronic illness.
Most respondents reported spending less than $30 per month, however others had spent up to $200 and more, on average per month.
Complementary products and services, special foods
Special foods: 7% of respondents bought special diet foods and often reported that these were very expensive items. Non-Healthcare card holders and low income households spent the least with $104 and $115 per month respectively; Healthcare card holders spent $154 and higher income households spent $187.
Complementary products and services were very popular with over half [53%] of all households using them often or all the time. All the various household groups spent very similar amounts of $35-38 per month. Often complementary products are expensive so respondents were asked if they had stopped using complementary products because of their cost: 20% reported that they had. Another 16% reported that they had stopped using some or all products partly as a consequence of their cost.
Loss of work and wages
39% of households experienced at least one member having to leave work indefinitely and forfeiting their wages as a result of chronic illness. Of those who left their work, 60% were the person with the chronic illness, 21% were the carer and in 18% of cases, it was both. As well as those who lost their jobs there was another 29% who had to take time off work without pay to attend appointments and tests either as the patient or the carer. This came at great cost for many households and as could be expected, increased according to income. For instance, those with an income below $26,000 lost on average over the previous 12 months $2,251. Those with an income over $52,000 lost an average of $5,523. These incomes are lost against a background of increased costs so households with chronic illness are commonly doubly disadvantaged.
Carers
30% or 109 of our respondents had a full-time carer in the home. We asked them how they were coping and 14 reported that they were not coping at all or barely coping. Most - 47 households - were coping ok but would have liked more support. The rest were coping comfortably or very well. One support that may have helped was respite but 73 households reported that they never or only occasionally had access to respite.