By Yasmin Noone
A new grass-roots movement to convince the NSW government to increase palliative care funding in its 2013/14 budget has captured the attention of the state’s politicians, with a record breaking campaign petition that has gained the support of 60,000 people throughout rural, remote and metropolitan NSW.
The community-based petition that bears the same name as the campaign for which it represents, More funds for palliative care, was tabled in state parliament last week and is now the record holder for the petition with the largest number of signatories to be tabled in state parliament.
The petition asks the NSW Legislative Assembly to provide for sufficient palliative care services to “meet the existing and anticipated future demands for such services in all areas of the state and in all types of institutions or other places where such services are required”.
The campaign document also demands that the state government up palliative care funding by $50 million in the 2012/13 budget and draws attention to “gross deficiencies’ in the availability of palliative care for adults and children.
“I think people know the value of palliative care as there are people out there who have had contact with palliative care services through their parents, spouses or someone [else] they love,” said the campaign’s lead, Dr Yvonne McMaster.
“And they appreciate it when we say ‘there isn’t enough people to do the work’ and so on because they know what we are saying is true.
“They really do see the need to do something.”
Around 38 per cent of the total number of signatures – almost 23,000 – came from rural areas.
The former palliative care doctor, Dr McMaster, said the campaign took off in rural and remote areas of the state, because those locations are often left wanting for services.
“It’s so bad in rural areas and people realise that. It’s just so bad.
“There is not a specialist palliative care doctor in southern or western NSW.”
According to Australian Institute of Health and Welfare statistics, NSW is approximately 200 specialist palliative care nurses short of the national average, and has fewer specialist palliative care doctors per head of population than any other mainland state.
In the 2012/13 state budget, the treasurer gave $5 million to palliative care.
This was extrapolated to $20m over four years. Since then, another $15M over four years has been found, boosting the total to be extrapolated to $35M over four years.
However, Dr McMaster and almost 60,000 other people throughout the state believe this will not go anywhere near meeting the shortfall.
Call to action continues
Both the campaign and the issue of palliative care itself were debated in the state parliament’s lower house last week, receiving bipartisan support.
However, the goals of the campaign have not yet been achieved and more petition signatures are needed to fully convince the NSW state government, not just to ‘support’ the campaign but to act to provide more funds for palliative care.
“It takes a lot to move the government and get money out of them,” said Dr McMaster.
“The success was the community support gained. The community responded enormously and we are still keen to collect more signatures for the campaign.
“The government was impressed with the number of signatures on the petition- it was a record number.”
But, she said, it’s necessary to keep up the campaign pressure.
“We may all need palliative care sometime in the future, either for ourselves or for the people we love. This is a way we can change things.
“Very often in life, you see things that need to be changed but don’t know how to do it.
“This is a very simple way to change something. Just get the petition and sign it, and get other people who care about palliative care to sign it.”
Support from the floor
The most impressive politician of the four (two Labor, two Liberal) who spoke on the day, according to Dr McMaster, was Barbara Perry – Labor Member for Auburn, Shadow Minister for Ageing, Mental Health and Disability Services.
According to Dr McMasters, “she spoke beautiful and movingly. She was just brilliant”.
“The gallery was packed and in the chamber a young man with Motor Neurone Disease, no longer able to speak or hold up his head, sat with his family,” Dr McMasters wrote to AAA.
“The second speaker for the Opposition, Barbara Perry spoke about & to him and spoke very movingly about palliative care. There was no argie-bargie between the two sides of parliament, just consensus that something must be done.”
Ms Perry spoke about the importance of palliative care and more importantly, what the near 60,000 petition signatures mean to the cause.
“This petition at its heart is about recognising the inherent dignity and worth of every person, and their right to die well,” said Ms Perry.
“A good death, of course, does not just happen automatically; we hear all too often of distressing cases of death marked by suffering.
“Dying well is dependent on good palliative care services—the intervention and compassion of teams of highly skilled practitioners making considered judgements in consultation with patients and families to ensure that dying patients are as comfortable as possible while underlying disease take its toll on their bodies.”
“…Most recently a friend of mine, Kathryn Gazzard, whom I spoke about in this House, died a beautiful death.
“I was there a minute before she took her last breath. But I saw the care and love given by all at St Joseph’s, and I thank them for their incredible work, as indeed I do everyone who works in this very challenging yet in many ways rewarding field of providing service to those who are dying.
“…This petition acknowledges the profound difference that good palliative care can make.
“It is far more than the cessation of curative treatment. It is not passive; it is an active process which anticipates and addresses problems to minimise the impact of illness.
“We know also that investment in this area makes good financial sense as it takes the pressure off other areas of our system that currently are having to implement stop-gap measures in the face of a rising tide of need.”
Ms Perry emphasised the importance of bipartisan support for the matter in order to ensure that a good death for all throughout the state becomes the “norm”.
“We do not want suffering among the dying to be the order of the day.
“It should not be a lottery dependent on what made you sick, how much you earn, or where you live. We do not want to see 70 per cent of people having to die in hospitals when most of them wish to die at home.
“The need is growing by about 17.3 per cent and current services are stretched, especially here in New South Wales. Until palliative services are given the full attention and funding they deserve a good death for all will not become reality.”
The campaign has only been running a number of months but to-date it has received the support of around 59,864 signatories.
On the 18 October, the group had only recorded 26,008 signatures, marking an increase of more than 33,850 signatures in just over a month.
When AAA spoke to the campaign lead, Dr Yvonne McMaster in October, she commented that signatories were being sought all over the state by traditional methods – word of mouth, street campaigning, letter-writing and emailing.
Campaigners had spent weeks and months collecting signatures from people working in hospitals, GP clinics, palliative care centres, aged care facilities, local chemists and even those shopping in suburban grocery stores.
The head office of the Country Women’s Association sent the petition to all of its member groups. Lions Club groups got behind the campaign, as did the Leukaemia Foundation, the Groundswell project, Aged Care Crisis, the United Hospital Auxiliaries of New South Wales, Combined Pensioners and Superannuants of NSW, and the Cancer Council.
More funds for palliative care follows on from the independent groups’ 24,000-signature strong campaign in 2011, which successfully convinced the state government to reinstate funds for palliative care in the Northern Sydney Local Health District.
To support the campaign or find out more information, email Dr Yvonne McMaster on firstname.lastname@example.org