Our recent survey has revealed 90 percent of cancer carers in WA are experiencing dangerous levels of distress, higher than levels experienced by patients.
Our routine distress screening uses a ‘distress thermometer' to rate overall distress on a scale of zero to ten. A score of four or more indicates the person is experiencing elevated distress and may require additional support.
Ninety percent of the 299 carers surveyed exceeded this threshold, with the highest levels recorded in Bunbury and the Hills area. This compares to 75 per cent of patients.
Melanie Marsh, Cancer Council WA Cancer Information and Support Services Director, said the results mirror our 2014 survey and carer wellbeing needs to be resourced as adequately as patient care.
"The high physical, psychosocial and economic burden carried by caregivers is under-reported and under-resourced," Mrs Marsh said.
"Our current health system is patient-centric. Cancer patients regularly report feeling like they're kept in a bubble during treatment, surrounded by doctors, nurses and specialists. The carers work behind the scenes to keep everything else ticking along, often forgetting about their own needs.
"There are 320,000 unpaid carers in WA taking a huge burden off the public health system by looking after our sickest and most vulnerable. They can't take care of others if they aren't looked after themselves."
Mrs Marsh said the effects of distress manifest in a many ways and levels should be monitored as routinely as other vital signs.
"Distress is a mix of anxiety and depressive symptoms, and can cause sleeplessness, lack of appetite, trouble concentrating and difficulty carrying on regular activities. Although some distress is normal, we're seeing carers reporting above a self-manageable level, which is very concerning."
The most common problems contributing to high levels of distress in carers are emotional (experienced by 96 percent of those surveyed), physical (76 percent), and family (66 percent).
"A carer's day can involve managing finances and meals, being the main contact for family members, and multiple appointments in hospitals they aren't familiar with. Many juggle this on top of existing careers and family commitments," Mrs Marsh said.
"When they don't take time to deal with how the diagnosis has impacted them, we see carers struggling physically, mentally and financially as a result."
Ms Marsh said the problem is likely much greater than the latest survey reveals, and surprisingly, levels of distress may be more serious in metropolitan areas.
"Our experience tells us the lack of strong social support networks such as those that exist within country communities means that ironically, people in metro areas tend to feel more isolated."
Mrs Marsh said it's currently predominantly up to not-for-profits like Cancer Council WA to support carers.
In addition to free counselling and assistance packages for eligible recipients, we offer free meditation, exercise and yoga classes for carers as part of our Life Now program at locations across the state. Research shows these activities can have a positive impact on the stress levels of carers and patients before, during and after treatment.
"Cancer Council WA provides support to more than 32,700 West Australians affected by cancer each year. Many of these are carers, but we know there are many more out there who don't contact us," Mrs Marsh said.
"There's no shame in asking for help. Calling 13 11 20 will connect you with our experienced cancer nurses who can provide access to our assistance programs, information and resources - or simply just a listening ear if you need it.
"You don't have to go through it alone."
For more information about our support services for carers, call us on 13 11 20, or visit our support services page.
In the 2018 Distress Screening Survey:
• 90% returned a score of 4 or more, indicating elevated stress and requirement for support
• All regions averaged above 4
• 31.8% returned a distress level of 8 and above, categorised as very high
• 95.98% were distressed due to emotional problems
• 76.6% were distressed due to physical problems
• 66.2% were distressed due to family problems
• 1.33% were distressed due to spiritual or religious concerns
• 0.66% were distressed due to end of life issues
Average distress scores per region:
South West - Bunbury
South West - Busselton
South West - Bunbury
South West - Busselton