Kerry Moss and her daughter Stephanie Ewing
Life is full of inequities based on our postcodes but when it comes to specialist palliative care, nobody should miss out. The reality is, some people are denied life-enriching palliative care when it’s needed most because of a shortage of specialist palliative care across the state.
The latest data shows that New South Wales has 0.9 full time equivalent palliative care doctors per 100,000 people, which is less than recommended by the experts. There is also a shortage of palliative care nurses, with a rate of 10.8 full time equivalent nurses per 100,000 people – the lowest rate in Australia. *
“Anyone with cancer, and their loved ones, should be able to receive palliative care when and where they need it.” says Kelly Williams, Manager of Policy and Advocacy at Cancer Council New South Wales.
“We know that cancer patients with access to specialist palliative care are more likely to have an improved quality of life, including much better control of pain, symptoms and anxiety, plus fewer medical interventions, emergency department visits and hospital admissions.”
“Specialist palliative care can also help carers and reduce stress on families. We hear from patients and families throughout New South Wales that palliative care makes a huge difference in people’s lives.”
Culturally sensitive palliative care services are also vital. In particular we need culturally appropriate care that meets the needs of Aboriginal people facing cancer, and their families.
Certainty for patient, staff and families
For Kerry Moss‘ 22-year-old daughter Stephanie, who was enduring brain cancer, the experience of palliative care was mixed. While in palliative care at home Stephanie’s health deteriorated and she was admitted to a palliative care facility where she stayed until her death. Kerry says she would never speak ill of the standard of care Stephanie received but found it difficult to access specialist palliative care doctors on weekends. There were also other challenges.
“We were told often that the palliative care stay could be no longer than two weeks and that we may have to be discharged,” says Kerry.
“This anxiety about continuity of care was something I did not need and it sometimes distracted me from being completely present to Steph.”
“It’s important to recognise that palliative care is first and foremost about the patient but at the same time, it is also about the living.”
“Palliative care services are essential and we need more of them,” says Kerry.
Addressing gaps in palliative care in NSW
Palliative care means people can keep doing the things they love for as long as possible and that families can make the most of the time they have left. And it helps patients to be more comfortable and in less pain when they near the end of their life.
But many people are unable to access this specialist care and support because there aren’t enough palliative care doctors and nurses in NSW. And many Aboriginal people don’t have access to care appropriate for their cultural needs.
When someone has a terminal illness, they deserve the best possible palliative care, whenever and wherever it’s needed.
How you can help
We understand that everyone’s experience is different and that conversations about palliative care are happening too late. The more people who share their advanced or terminal cancer or palliative care story, the stronger we will be as a community to improve palliative care in NSW for the future.
This April, we are asking cancer patients, carers and family who have experienced advanced or terminal cancer in the last five years, to call Cancer Council 13 11 20 Information and Support and share your experience.
You’ll help paint a picture of the difference that palliative care can make to people’s lives, as well as the impact of gaps in access to palliative care. Your stories will also help inform and strengthen the services Cancer Council provide to people with advanced or terminal cancer across NSW.
Call Cancer Council 13 11 20 Information and Support and share your experience.
9am-5pm Monday to Friday (excluding public holidays) during April
Or on Thursdays during the extended hours of 8am-6pm.
If you’re unable to call 13 11 20 you can also share your experience online.
Call Cancer Council 13 11 20 Information and Support to speak to a specialist cancer professional.
*Australian Institute of Health and Welfare. Palliative care services in Australia 2016 – tranche 1.