Meeting the supportive care needs of people affected by cancer

Cancer Council NSW exists to help people live well during and after cancer – people of all walks of life, no matter where they live in NSW.

Understandably, we face the challenge of cancer support needs varying significantly across the state. For example, people living in rural and remote areas often face longer travel distances for cancer treatment and greater out-of-pocket costs.

To help us optimise our supportive care services and inform our advocacy work, we launched our Supportive Care Needs of People Affected by Cancer Survey (SCN Survey) in 2022. The survey invited people affected by cancer (people with a current or previous diagnosis, and carers) to share their cancer experiences and cancer support needs.

Read on to learn more.

The community rated Cancer Council services highly

We were pleased to learn that participants that have used Cancer Council services gave us an average score of 8.1 out of 10. This means that most participants find our services and resources supportive and informative.

One participant mentioned that “from the moment I rang [13 11 20], I felt supported and heard. I am accessing counsellor support and we have had help with our grocery bills also, we are so grateful for that. The information booklets are phenomenal.”

People affected by cancer want more psychological support

Perhaps unsurprisingly, 70% of participants indicated that in the past month they needed physical and/or psychological assistance, with those still going through treatment expressing the most unmet needs in these areas.

However, what stood out to us was that a majority of people identified at least one area in which their needs were not being met. This included people who had a past cancer diagnosis and carers.

A startling insight gained from the survey was that 72% of respondents did not recall being told about Cancer Council’s 13 11 20 Information and Support Service by a member of their health care team. This means that people are not informed about available support they may need when they’ve been affected by cancer.

People affected by cancer need more physical support

Unmet physical needs were common among participants with a current or past cancer diagnosis. Participants in these groups reported that they wanted more support with managing tiredness and completing usual activities like housework.

We’re encouraged in knowing that Cancer Council services are already set up to address many of these needs. For example, our counselling service, peer support, information resources, and financial support for housework services. We will continue to promote these services and take insights from this survey’s results to guide service improvements and any future service design and advocacy work.

Support needs differ depending on where people live

The results of this survey confirmed that support needs differ across NSW. More survey participants from regional areas with a current or past diagnosis than from urban areas, expressed a need for accommodation near their treatment hospital or clinic, and money to help pay for travel, treatment and equipment expenses.

After years of advocating for change, we successfully compelled the NSW Government to increase the accommodation and travel allowance  for regional and rural cancer patients in their June 2022 budget announcement. These patients will now be less out of pocket by thousands of dollars.

We will use the results from this research to inform decisions about service provision, drive service improvements, plan for future Cancer Council services and to campaign for broader health system changes.

Ultimately, we want to make sure all people affected by cancer can find the support they need. We won’t rest until the job is done, because we’re here for everyone affected by cancer, for life.

If you or anyone you know has any questions or concerns about cancer, you can call Cancer Council on 13 11 20 or visit our support page.