BY DR YVONNE MCMASTER IN WALCHA, NSW, 26/1/2018
We are meeting on the traditional lands of the Dungutti People, who, I’m told, have lived in this area for many thousands of years. I acknowledge them and give my respects to Elders past and present.
I’d like to acknowledge and thank Mayor Eric Noakes, Aurora Reilly, President of the Australia Day Committee, and the Australia Day committee and and of course, all of you! – the wonderful community of Walcha for making my husband, Warwick and me so welcome.
I have a very special relationship with this part of New South Wales. You see, back in the 1950s I went to school in Armidale, and then I did my first year of Medicine at the University of New England.
Many years later, Walcha was one of the first towns my husband, Warwick, and I visited when I began campaigning for everyone in rural NSW to have better access to palliative care. It was 2012 and we on our way to Armidale and we left our petition here in the museum and at a GP’s surgery – we looked around and were so impressed with this town.
I am one of more than 300 Australia Day Ambassadors who across the country right now are participating in community celebrations just like this one. I am honoured to add my voice to the chorus that Australia is the greatest country in the world.
Throughout my life, as a palliative care doctor and campaigner, but even well before that, I’ve been privy to a not-so-secret quality that seems to stitch us all together as Australians.
Namely, our resilience – especially during hard times.
So many of us and our ancestors have come to this country seeking a better life for ourselves and our children – or, growing up on it we’ve learned to endure its rugged ways.
I think this breeds in people a certain compassion for others, that, although we see division across the world right now, and some even in Australia, it’s our resilience and compassion, for the most part that seem to be holding us all together.
I think I first learned these qualities through my mother.
She was a refugee from Vienna, you see, who, just before the outbreak of the Second World War, fled Hitler’s murderous regime – that blamed Jews like her for all Germany’s woes, and had already started rounding them up, drowning them in the Danube, and beating them to death on the streets.
It was a savage time – but getting out of Europe wasn’t easy in the 1930’s. Britain only accepted children. The US only took scientists. And Australia had a policy that accepted refugees only if they had a contact in the country who could guarantee them 200 Australian pounds on arrival.
My mother, ever-resourceful, sent her story to the Sydney Morning Herald.
Months passed as the mail made its way through the dark. And when it returned, a glimmer of light.
The Bishop of Brisbane offered the guarantee my mother needed to come here.
And so, she set out on the six-week journey to Australia, sailing into Sydney Harbour surrounded by the bushfires of Black Friday, in January 1939.
Out of the frying pan and into the fire.
But by the same compassion that had got her here, my mother’s first priority was to get her own mother, and several other families, out of Europe. She no sooner landed than she flew to Canberra to make the arrangements. She saved many lives, just as the War in Europe broke out in earnest.
I was born and did most of my growing up in Sydney.
My mother of course, was very pleased that I became a doctor. That is, after all, every Jewish mother’s wish for their child.
Her story is like so many who call this country home, and as I became a GP and later became a palliative care doctor, it’s that type of story I heard more and more as people confided in me toward the tender end of their lives.
For those unfamiliar with it, palliative care is a field of medicine that relieves the pain and suffering of people living with a life-limiting conditions – things like cancer, heart or kidney failure and dementia. Palliative care can help improve a patient’s quality of life at any point, from the first diagnosis to the final breath.
It’s certainly evolved a lot since the early days – I was first exposed to it in 1974 when I was practising as a GP, but was invited to visit our local hospice.
The experience was transformative.
The next year, 1975, Warwick and I attended the First International Meeting of the Association for the Study of Pain in Florence. And who wouldn’t take a tax-deductible trip to Florence?
There I met the pioneers of the field that we now call palliative care. And I became one of the first to bring their new knowledge back to Australia. The knowledge that with the right medications and careful attention to detail you can get rid of the pain and people could live well instead of suffering.
Thus began the better half of a 40 year career, looking after people as they approached the end of their lives.
People say to me “You are so wonderful, it must be so depressing to work with dying people” but it isn’t. It’s really wonderful. There is so much you can do to help.
You see real life.
Patients enjoying laughter with loved ones. Sharing their stories. Scared, jealous, joyful, hopeful, reflective, relieved, happy and angry – not just quaint cliches, but all the messy colour that is real life.
You see, when time means so much, there’s no time for superficial stuff, or even meanness – all that superficiality is stripped away, and the real person beneath is revealed. And when the chips are down people really are quite wonderful.
One sticks in my mind – an 82-year old Scot, with cancer of the oesophagus. Not fun for anyone – but being a Scot, this was a particularly hard blow, because he couldn’t swallow even a drop of water, let alone Whisky.
He was pretty low when I visited him that evening. He said he was ready to go but he just wished he could enjoy one last dram of whisky.
I had a few tricks up my sleeve with medications and started them at once. When I came to him the next day he said “I think I’d like to try that whisky – but only if you have one too.” I’d never tasted a whisky before
And so we sat and clinked our glasses and swallowed the Scotch – and having partaken of that one last pleasure, as the sun set that day, he died.
That’s a type of resilience we don’t seem to celebrate enough of – not just being tough, but also being tender. Not closing oneself off from the world, to stubbornly weather the storm alone, but opening oneself up to seek the strength of others.
In the end, what people seek isn’t always a sense of achievement or success – but a sense of closure and completeness.
In a strange piece of Post-War irony, a German man in his 60s came to me. He had a tumour on the side of his neck which pushed his chin askew and reminded me of a cauliflower.
It hurt, it oozed, and it stank about as bad as you’d expect – if not a little worse.
Werner was his name and he had lost all hope and wanted euthanasia. I explained I didn’t do that but promised I would help him. It only took a couple of days to get rid of the pain and the tumour shrank a bit with the steroids that made him feel better too. Then he went home and I began visiting him there every week.
Now, I’m a big believer in being reliable. That’s what makes people know you care, and that you care about their time – so at the same day, same time, each week, I’d be knocking at Werner’s door.
I spent about an hour there at a time, and every visit he’d open up to reveal a little extra piece of his life.
First, he told me about growing up in Germany in the 1930’s. Then about the coming of the War, and being called up at the ripe old age of 16.
He told me about serving on the front, at the Battle of The Bulge. The allies were doing pretty well. Werner and thousands of others were captured. It was winter. They were held in the frozen fields surrounded by barbed wire. His fingers froze with frost bite. They all got dysentery. His frozen fingers couldn’t get his pants down quickly enough. He felt so profoundly helpless then.
He told me about his experience after the war, emigrating to Australia with his wife and building a home in Sydney. He was so proud of all he had achieved.
Then at one of my visits, he played me a record.
It was a trumpet voluntary, rather like the Last Post. He explained that in ancient times this trumpet would ring out across the battle fields when the day’s fighting was over, so that the wounded could put their hands up to be seen and collected in horse drawn carts. It was his way of saying thank you, for me scooping him up when he had felt so very helpless.
He died so very peacefully in his own bed with his wife beside him just six weeks after we first met. His life truly complete and rounded off and true.
In another piece of symmetry which seems especially relevant today, my mother received an Australia Day honour some thirty-odd years ago.
She’d been very active in her retirement with the Red Cross, Amnesty International, the Women’s League For Peace and her local Senior Citizens club – and so she was made Senior Australian of the Year by the Local Council.
I wasn’t allowed to tell her about it until it was announced on the award night. I just had to get her there on a pretext. They made the announcement and my mother had to get up and make an impromptu speech. She did so well and I was so proud of her. What she talked about was her love for Australia and her enormous gratitude to Australia for taking her in, making her welcome and giving her such a great, rewarding life. I can’t stress enough what a great thing it is to live in a country where the great majority of the people have as second nature just the wish to help others.
Sadly, my mother was diagnosed with breast cancer when she was 72. It was four years before she started having pain in her bones from multiple secondaries in her bones. But she was lucky because I was a palliative care doctor. While she was having radiotherapy and before the hormone treatment kicked in, I was able to control her pain, carefully adjusting her morphine to just match the pain. An OT checked the house and provided equipment. A physio taught her how to breathe with her broken ribs and we all talked together about the future. She had two really good years after that, going to town for lunch, meeting her friends, all the time allocating her treasures. She watched her garden and waited for it to bloom and when the end came I was with her and it was so peaceful. I miss her, but I want to make very sure that the kind of care she had is available to everyone who needs it.
I tell that story because I want everyone to know that palliative care helps people, not just at the very end of life, but also to live as well as possible in the last years and months and days of life.
But there’s another dimension to resilience that I’d like to tell you about.
In 2011 I was leading a cancer support group, when I learned that the funding had been cut to the palliative care service in my old stomping grounds, Northern Sydney.
I didn’t know what to do, but I knew something had to be done.
I started a petition and started meeting with politicians and health bureaucrats. I wrote letters and got stories in local papers. It took 8 months to raise 24,000 signatures on the petition, to see every Local Member in the area affected and to get up craw of the bureaucrats who had cut the funding. That triggered a debate in Parliament. The funding was restored and Barry O’Farrell got up on his hind legs and said “under my government, palliative care will never be disregarded as it was under Labor! “
Well, one thing leads to another. All the time I was running up and down the North Shore collecting signatures, people were saying: “If you think it’s bad in Sydney, you should see what it’s like in rural NSW.”
So, I looked and asked and saw and was shocked. Rural NSW has been entirely overlooked when it comes to care when there is no cure. So, another petition, another lot of pollies and bureaucrats and lots of trips to rural towns.
This started me on my current madness.
We’re now seven years in, with 3 more debates in Parliament under our belt, a co-ordinated campaign with the NSW Cancer Council, 55 Ambassadors on our ranks and over 85,000 signatures on our new petition, all trying to get more funding for palliative care across the State – especially here in New England!
You see, Tamworth and the region around it, has been the worst resourced area in NSW when it comes to palliative care.
It wasn’t always this way. Once upon a time, Tamworth had a wonderful palliative specialist, Dr John Trollor, who travelled around New England seeing patients right up to the Queensland border. He even got me to fly up to Tamworth to do some education for the GPs once.
He started Nioka, the palliative care unit in Tamworth, and set up several towns with palliative care nurses. When John retired, Dr Richard Thornton, a GP who had learned about palliative care, carried on the good work for a few years but also retired and still hasn’t been replaced.
I’ve been kicking and screaming about this area for the last three years.
The good news is that years of effort are finally starting to pay off.
In the last NSW Budget, the Treasurer announced a record enhancement for palliative care to the tune of $100M over the next 4 years. And just recently, it’s been announced that Tamworth will have additional funding for a palliative physician. An additional palliative care nurse has also been appointed there. More are needed and we have to ensure that a great person is found who will take the position of palliative specialist for the region – but these are all positive steps.
I think it’s easy to winge and see the Government as some immovable object, weighed down by politicians and bureaucrats.
But we are so fortunate to live in a country that allows everyday citizens to chip chip chip away, without persecution, and slowly, over time, to make progress.
It’s far from perfect, and change never happens quite how or why or as quickly as you’d expect, but it does happen with enough persistence.
I understand that political advocacy can seem fuzzy and far-fetched – so I’d like to leave you with a story that hopefully gives a more accurate portrayal of how things change behind closed doors, and why persistence pays.
In 2012, after getting the funds restored in Northern Sydney, one of the people in my Cancer Support Group spoke up.
He was a lovely young man who had a wife and two children aged 10 and 11, and a horrible cancer that formed lumps beneath his skin and in his organs. He was receiving radiotherapy at Westmead Hospital, but parking there was impossible.
It turned out that everyone in the hospital, from the chief surgeon down to the lowliest cleaner, all used the carpark outside the Cancer Centre because it was free and unregulated. And the hospital administration swept it under the rug.
So, I used the advocacy skills that I had learned in Northern Sydney and contacted the Local Member about the situation.
He was a lanky young man, but he has a good heart. He met with the patient and me, and soon enough we were all on the front page of the local paper beneath the headline: BAD TREATMENT AT WESTMEAD.
Well I tell you, the parking situation was fixed quick smart.
But it doesn’t end there.
You see, over the next five years I would have annual meetings with that lanky young Local Member. He’d seen the suffering in the young man from my support group, and he understood the need.
So, when he was made Finance Minister I started telling him about the Business Case for Palliative Care that I had prepared along with my colleague Dr Tony Ireland, which showed that if the State Government properly funded palliative care they could save $140M a year in NSW.
But he didn’t do anything.
Then next year I went to see him and he asked me what it would cost to make palliative care work for everyone in NSW and I calculated that an additional $25M a year would be needed to bring services up to scratch.
But he didn’t do anything.
And it may have been easy to stop then, and assume that Government is just some immovable object weighed down by politicians that only care about themselves. But we just kept going – meeting people with stories, collecting signatures, organising town hall meetings and forums, getting stories in the media, now with the added support of the Cancer Council.
I went to see the lanky young man again at the end of 2016, and reminded him about the cost savings.
“Hmm… I don’t know why the Treasurer doesn’t invest in palliative care” he lamented, but again, nothing happened.
Then, one day in early 2017. Premier Mike Baird resigns. The Treasurer, Gladys Berejiklian, becomes Premier. And my lanky young man, Dominic Perrottet, becomes Treasurer.
And what do you know? He did something!
Our ask of $25M a year was announced in the May 2017 Budget – and what’s more, he asked me where it was most important to allocate.
You can bet I stressed rural NSW and New England.
Now every rural Local Health District has received funding for an additional palliative care physician.
The journey is not over, and there’s still much work to be done, but this is how advocacy works – slowly, in the background, one action building on the one before – and why persistence, and determination, and resilience is so important.
If you see something wrong, speak up, because you never know who might hear you in this beautiful country we call Australia.
On that note, I’d like to thank the Walcha Council for inviting me to wonderful Walcha, and thank you for listening.
Happy Australia Day everyone – enjoy everything on offer, and my best wishes for the coming year.
Dr Yvonne McMaster OAM
Walcha Australia Day Ambassador 2018