Faced with a wait of at least two months for an appointment to see a specialist doctor to investigate constant pain, Belinda’s mother drove several hours from regional NSW to take her father to seek help at a clinic near her home in Sydney, where he was told he had oesophageal cancer.
“He was in constant pain, all day and night, and the best they could do, in July, was to tell him he could get an appointment in September,” says Belinda.
“He said himself that he would have probably been dead by then without even knowing what was wrong.”
After reacting badly to chemo treatments early on, he was admitted to hospital where his oncologist was based, and spent more than a month there.
“My mum would have to drive for an hour-and-a-half just to get there to see him,” says Belinda.
When her father got sicker, access to much-needed palliative care at home was essential because of the long drive to the regional hospital from the family farm, and his wish to stay at home. It also became difficult to get help from their family GP when Christmas time was upon them.
“Around Christmas time, he was very sick and that was when my mum wasn’t really coping. The GP basically said he was going on holidays and there was no way we could contact him and that’s it,” says Belinda.Thankfully the palliative care nurses helped to find an alternative GP to communicate with and even assisted with communications with the funeral home.
Belinda’s father received palliative care at home but the family found some aspects of the service complex and stressful, in particular getting access to medication when it was vitally needed.
“The nurse would come and tell you what she thought he needed, but then she had to go and ring the palliative care doctor and confirm that’s what he needed. Once confirmed, you then had to go and get a script from your GP who by that stage of the illness, didn’t really know what was going on because he wasn’t even seeing you anymore,” she says.
“When you live in the country, it’s not that easy. My mum has to drive 40 minutes to go to a chemist, to get there and back.”
Belinda says she had no complaints about the care her father received when he was dying but the issue with obtaining medication prescribed after these visits was difficult due to their location.
“My Mum couldn’t have done without the palliative care team and they really were great. They came out there twice a day to care for him and provide resources, personal care, training for us and advice. In the end he did die at home,” she says.
“The nurses were very kind and helpful with answering our questions and helping us to be more aware of what was happening, and how to help him be comfortable. When you haven’t been through something like this before, it really helps having people around who can help you understand what is going on, and help prepare you for what is to come.”
Belinda says it was important for her father to be able to die at home but specialist care was lacking at a crucial time in his illness. The specialist palliative care doctor was available to visit Belinda’s father just once when he was dying. “I think we need more doctors especially, because, as I said, my dad saw a palliative care doctor only once.”
When our loved ones are diagnosed with a terminal illness they deserve the best possible care and support. But, right now, that’s not always possible because there's a shortage of specialist palliative care in NSW. That’s just not good enough. We need the NSW Government to fund an additional 139 doctors and nurses and to meet the palliative care needs of Aboriginal communities.