Hunter and Central Coast cancer patients, carers and families asked to tell their stories on palliative care | poll

HUNTER New England Health District has less than half the number of palliative care specialists and nurses it needs, says a retired palliative care specialist as the Cancer Council launches a campaign for services to support the terminally ill.

Dr Yvonne McMaster has released a series of letters sent to NSW Government ministers over the past five years arguing regional areas, and particularly the Hunter New England Health District, are failing the terminally ill by significantly under-resourcing palliative care services.

The health district’s population of more than 900,000 requires nine palliative care specialists to meet recommended benchmarks, but in March palliative care was funded for 5.9 positions but had only 2.9 positions filled after the recent resignations of two senior palliative care specialists, Dr McMaster wrote in a statement to the NSW Government.

In a business case for then NSW Treasurer Mike Baird in February, 2013 Dr McMaster said an adequately resourced palliative care service would save NSW $140 million a year. In 2016 she told then Finance Minister Dominic Perrottet that a statewide service would cost less than $30 million. 

A 2011/2012 Fact of Death Analysis prepared for the government showed that in the final year of life terminally ill patients can spend 40 days in hospital, costing the state $1 billion. Palliative care would dramatically reduce the cost and provide much greater support to the terminally ill, Dr McMaster said.

“Palliative care is the difference between living as well as you can with your terminal condition until you die or suffering until you die. It makes the difference,” Dr McMaster said.

“Palliative care should be coming in very early on when people first realise their cancer isn’t going to get better, to support discussions so things can be put in place so that people can live and die at home if that is what they want.”

NSW Cancer Council Hunter Central Coast manager Shane Connell and Hunter Cancer Action Network spokeswoman Barbara Gaudry have called on cancer patients, carers and families in the two regions who have been affected by advanced or terminal cancer in the past five years to tell their stories. They are invited to phone 13 11 20 until April 30 to help the Cancer Council assess the availability and experience of palliative care.

“The information collected by Cancer Council will help paint a picture of the significant difference that palliative care staff make to people’s lives, as well as the impact that gaps in access to palliative care have on the community,” Mr Connell said.

The campaign comes after data released in January showed few John Hunter Hospital and Calvary Mater patients were being referred to palliative care.

One in 10 patients had no mention in their notes that they were dying at the time of death, only one in 10 was having a pain score done, and out of 100 people none was coded as palliative at the time of death, Hunter intensive care specialist Dr Peter Saul said.

Mrs Gaudry said the campaign also hoped to educate the community about how palliative care was not just about the final days of a person’s life, but was about supporting a person with a terminal diagnosis through difficult stages including treatment.

It was a shock for both her and husband Bryce Gaudry, the former Newcastle MP, when treatment for his pancreatic cancer caused almost overwhelming pain, vomiting and nausea.

He had major surgery in April, 2016 followed by seven months of chemotherapy. Although he counted himself as “one of the lucky ones, if you can call it lucky”, because 30 per cent of people diagnosed with pancreatic cancer died within two months, his doctor had given him a three per cent chance of surviving the cancer.

“It was only after we got through it that I realised palliative care should have been organised for Bryce. That’s the time you need palliative care, when the reality is he has only a slim chance of survival and the treatment is almost overwhelming. But there was nothing,” Mrs Gaudry said.

“He arrived at the front door after treatment and he was writhing in pain, and had uncontrollable vomiting. He was just sent home with some tablets that didn’t work. I didn’t understand at the time that we should have had palliative care organised to give Bryce and I support and help to get through it.”

Mrs Gaudry said they were both willing to speak strongly on the need for expanded palliative care services because of serious concerns about many others in the community who would be experiencing what they went through.