Vale Sally Crossing

Introduction

Sally Crossing was a tireless advocate for better cancer management, more consumer involvement in treatments and more accountability of the medical profession. She argued that health is no different to any other industry, and whether paid for by taxes or private insurance, must be held accountable about costs and quality of care.

She touched many people’s lives with her calm demeanour and determination, including my own. Like many people, I own Sally a big debt. She organised a media interview with the Australian Broadcasting Commission for me, which broadcast the hidden problems of over priced and dangerously sub standard cancer treatment being carried out in some private hospitals. Sally died from cancer on the 28th December 2016. This article is a tribute to her.

Early years

Sally Crossing was born in Melbourne at the beginning of 1946, approximately six months after the end of World War II. This placed her in the baby-boomer generation.

Baby Boomers refers to a large rise in child births just after the horrors of World War II in which over 60 million people were killed. This generation grew up in expanding suburbs, supported by a prosperous economy, family values and the availability of domestic appliances and cars. As government funded education became available, this generation found a voice and many of them went on to championed social causes. The underlying philosophy of the boomer generation is a ‘can do’ attitude.

Sally’s mother was a librarian, and her father an engineer. The family spent some time in England, and moved to Sydney when Sally was 8 years old.  Sally later described her childhood as happy.  Although she had a brother, six years younger, Sally remembers feeling like an only child. She was bookish, and liked to read.

I was off on my own imagining adventures.

Education

Sally moved with her family and was educated in a range of different schools, including North Sydney Girls High School and Abbotsleigh.

After finishing school she went to Sydney University where she lived at Women’s College. She found this an exciting place and went on to serving on its Council for several years. Sally apparently decided to study economics after meeting the eminent economist, public-affairs commentator and university chancellor, Herman David Black, at one of her parent’s dinner parties. He convinced her that economics was the right degree to undertake.

Paid employment

After University, Sally’s first job was with the Bank of New South Wales where she helped the economist Reginald Holder to write the history of Australia’s first bank. She then moved to London, where she worked for the Conservative Party’s Shadow Minister for Minerals and Energy.

Sally returned to Australia in 1970 and got a job on the UK Desk in the Reserve Bank.

Family life

In 1971 Sally married Peter Crossing, and they moved to Griffith in NSW, which she described as ‘a change of pace’ after Sydney and London.

Peter was working as a farm management consultant and Sally got a job as an English teacher in the local high school. The family then moved for a year as Peter was working in Iran.

After Iran, Sally and Peter moved to Rome where they stayed for 8 years and where their children were born. Sally became a full time mother and student of things Italian.

While overseas, Sally and Peter had two children. The family returned to Australia in 1980 when the children were 6 and 4 years old.

Political and government work

In 1984 Sally got a part time job in the NSW Parliament – working for some of the Liberal Party’s Shadow Ministers. Sally described this period as ‘very exciting, a lovely way to go back to work’.  After the Greiner government was elected in 1988 she joined the staff of one of the ministers, which she discovered was ‘a strange world’.

However, it taught her a lot about politics and how governments work. After 9 months Sally joined the NSW Department of Minerals and Energy where she worked on implementing the policies she had helped to develop while working for the Liberals when in Opposition. Her subsequent career within the NSW Public Service included being a Senior Policy Officer within the NSW Cabinet Office, and Acting Director of Policy within the Department of Mineral Resources.

Early breast cancer and a change of direction

In 1995, when Sally was 49, she was diagnosed with early stage breast cancer.  This was a psychological shock.

I thought it was the end of the world.

In typical fashion, she had surgery and radiotherapy then carried on working.

At his time there were no internet resources, no help finding the right doctors and no psychological and post-surgery support for women with breast cancer.

Women were getting around with bags of bird seed in their bras and all sorts of things, switching prosthetics with each other.

Sally later said.

It was pretty grim.

Drawing on her experience of breast cancer Sally wrote an article which was published by the newly formed National Breast Cancer Centre (NBCC) in their newsletter for clinicians.  The NBCC had been formed in 1995 in response to a Senate Inquiry which found that breast cancer treatment in Australia was less than optimal and needed to improve.

The NBCC then invited Sally to participate in their 3 day course on consumer advocacy and science which was held in Melbourne. While there, she met Lyn Swinburne and Sue Lockwood, consumer advocates who had already established a breast cancer consumer advocacy organisation in Victoria. Lyn and Sue knew that a similar organisation was needed in NSW, so they asked Sally to take on the task.

The Breast Cancer Action Group of NSW

It was a big decision. Sally had a full time job, a husband and two children, a dog and two houses. She thought about it, and realised that it was an important thing to do.   

‘I realised… it needed to be done, (and) I had the skills and understanding and I had the urge to do it.’

Sally was now in her early 50s, and had to give up her paid job. Her husband Peter was very supportive of the idea.

Establishing a new organisation was a huge task – one which Sally had never had to do before. At times she would sit in her office and wonder what she had got herself into. The operational side was a totally new area of work for her, but other women were very supportive.  The result of Sally’s work and the support of other women was that the Breast Cancer Action Group NSW was established in 1997, with Marie Bashir, Governor of NSW as its patron and major encourager.

Cancer Voices

Sally’s experiences in breast cancer advocacy showed her that people with other cancers needed a voice, and in 2000 she was pivotal in the establishment of the Cancer Voices movement in Australia. She went on to lead Cancer Voices NSW for 8 years. Sally published A Decade of Success: Cancer Voices NSW 2000-2010 and has been co-author of a number of peer reviewed articles.

The Breast Cancer Network of Australia

In 1998 Sally was a member of the steering committee for Australia’s first national breast cancer conference for women. They published a report called Making a Difference in 1999, calling for a greater emphasis on education and communication with patients from the medical profession.

Following the conference the Breast Cancer Network Australia was set up to represent the voices of women with breast cancer.  Lyn Swinburne who was another member of the steering committee was elected CEO of the new organisation. It was launched in Canberra at at the inaugural Field of Women, a visual display of breast cancer statistics on the lawns of Parliament House in Canberra.

Clinical trials registry

In the late 1990s, Sally Crossing became aware that consumers wished to increase participation rates in clinical trials. She became the first Principal Researcher with responsibility to bring the consumer’s perspective to the University of Sydney’s Australian Cancer Trials Project, and took charge of co-ordinating consumer opinions. The resulting website was funded by Cancer Australia and is now maintained by the Australian Clinical Trials Registry. Sally said:

“Australian Cancer Trials will make it much easier for people affected by cancer to make informed decisions about entering clinical trials”.

Secondary cancer

In 2005 Sally’s breast cancer reoccurred. She reluctantly decided to have a mastectomy and during the surgical workup, three tumours were discovered in her liver.

She thought the advice given by a medical oncologist ’… we will just give you a bit of chemo… leave the tumours there to see how they respond’ was unconvincing. So Sally used her consumer advocate skills to investigating other options.

She discovered that the liver is the only organ that can actually regrow, and that people can survive with only 20% of their liver. She and her husband then interviewed three different liver surgeons, and found one who met the criteria she had developed when compiling the breast cancer directory.

In late 2005  Sally had a mastectomy, followed two weeks later by surgery to remove the tumours in her liver. In typical understatement she commented that her treatment was undertake:

Over the summer holidays so that it wouldn’t take up too much time from the year.

The Consumers Health Forum

The Consumers Health Forum traces its beginnings to ‘A petition of reform addressed to the Minister’, in May 1985, which called for a formal system of public participation to be built into the national health administration. It is now arguably the most important consumer group in Australia.

In 2008, Sally Crossing became the Vice-Chair of- the Consumers’ Health Forum of Australia.

In 2010 she went on to become involved in the establishment of a peak health consumer advocacy organisation, Health Consumers New South Wales and she became its first Chair in 2011.

Sally believed that the consumer organisations such as this are an important part of democracy.  They are also an important element in a health market place.

Every other business which has customers must take notice of what its customers need and want… Health, until recently has not done that because of its medical model nature.

Consumers, she says ‘are not just using the services – they are actually paying for them.  It doesn’t come from Nicola Roxon or someone else – it’s our money paying for it’.

CanRefer

Another of Sally Crossing’s significant achievements was the establishment of a Directory listing NSW breast cancer specialists and support services. This directory made available to women, detailed information on variables critical to service quality, such as the treatment rates of individual doctors. Despite significant opposition by the AMA and threatened legal action, Sally Crossing pursued this goal relentlessly and successfully.

She continued to be an influential advocate for access to a cancer generic directory – which came about as CanRefer, developed by the Cancer Institute NSW.

The National Breast Cancer Foundation

The National Breast Cancer Foundation was founded in 1991 by breast cancer survivor, Janelle Hail who was diagnosed with breast cancer at the age of 34. At the time of her diagnosis, there was little information about the disease, and she was forced to make a decision about her health with few options.  After her treatment, Janelle made a commitment to help women around the world by educating them about breast cancer and the importance of early detection.

Carole Renouf who was CEO of the Foundation from 2010 to 2014 says there is no doubt that the breast cancer movement grew out of the women’s rights movement. In the publication Breast Cancer Then and Now, 20 Years of Difference, the Foundation describes a massive shifts in treatment, research and advocacy. Women have gone from being passive objects in the medical system to being active participants. This is due to the tireless work by people like Sally Crossing.

“…(the breast cancer movement)… has strong feminist roots,” Carole Renouf says. “In that sense I think the almost instinctive sense of solidarity women tend to exhibit has really fuelled activism for breast cancer.”

Awards for services to society

In 2001 Sally received the inaugural NSW Consumer Advocate Award, for establishing the Directory of Breast Cancer Treatment and Services, NSW.

In July 2005 Sally Crossing was awarded a Member of the Order of Australia for services to the community through health care consumer advocacy and the establishment of the Breast Cancer Action Group NSW and Cancer Voices NSW.

In 2011 she was identified as one of the five Most Influential People in the medical section of the Sydney Morning Herald’s  Sydney’s Top 100.

In 2014 she received an Alumnae Award given by the Women’s College. In the same year Sally also accepted an honorary doctorate of Health Sciences from the University of Sydney, which was conferred for ““extraordinary leadership and contributions to supporting those with cancer from diagnosis, though treatment, care support and survivorship, in both advocacy and research”.

In 2014 Sally was named a winner in the 100 Women if Influence Awards in the philanthropy category (AFR/Westpac).

My involvement with Sally Crossing

I had been diagnosed with cancer treatment in 2007 and because I had private insurance, a GP automatically referred me to a private clinic. From day one my treatment was just appalling. Two  days before a mastectomy and reconstruction the private hospital rang me to say “bring $5,000 cash or the operation won’t go ahead”.

I spent the day of my surgery fighting with my private insurance on the phone. They advised me I had an older type of cover. It turned out virtually non of my cancer treatment was covered. The private hospital was consistently rude. For my chemotherapy the message was ‘bring $3,000 cash or it won’t go ahead’.

I was booked in for an overnight stay after the first chemotherapy treatment in ‘case I needed monitoring’. I was violently ill after treatment. My monitoring consisted of being dumped in a tiny private room at the end of a narrow corridor and left without any anti nausea medication, any health assessments, any medical review or any qualified oncology nurse support.

The oncologist was a lazy arrogant man would didn’t bother to return my calls for anti nausea medication. His nurse was a shallow woman with no oncology training, who appeared to be little more than a medical secretary. I ended up in my GP’s office every day after each chemo treatment, desperate for help. Unable to eat, I rapidly lost weight. By the end of the treatment I had lost 15% of my body weight. I was never reweighted during treatment and had no health assessment what so ever. I kept receiving the same chemo dose, prescribed for when I had been a size 12. By the end of treatment I was wearing size 8 clothes.

Within 6 months I was $10,000 out of pocket, collapsing from malnutrition and fatigue. I subsequently found out from a public oncology nurse, that if I had gone public for the same treatment, my treatment would have been completely different. Education and health assessments would have been standardised and compulsory. No chemotherapy was ever administered to public patients unless they had been reweighs before each treatment. Doses were often changed once patients crossed the 10% change in body weight mark.

It turned out that this private oncologist also worked in a famous public cancer centre, just a mile from his private practice. His pubic patients were all reweighed before each treatment. Non of his private patients were ever reweighed. His pubic drug charts were on a computerised software program called CharmHealth, that had been specifically designed to prevent drug dose errors. His private patients all had paper drug charts, and sections where health assessments and weight were meant to be, had simply been left blank.

I wrote to the state health bureaucracy, the mainstream media and cancer ‘support’ groups. They all brushed me off, pushed me from one department to another, lied about the problem with this hospital ‘being fixed now’ and told me my letters had been ‘filed for future reference’. No body wanted to know about hospital errors occurring in private hospitals.

I joined Cancer Voices and Sally heard my story. She was instrumental in getting me the 2013 interview with Norman Swan on the ABC’s Health Report. Sally lobbied for months to get me the interview, then get it aired on the show. It would never have taken place if she had not become personally involved. I know this, because I had previously contacted the media about this issue on several occasions and had never received so much of a ‘thanks but no thanks’. It seems that if you are not in what Michael Moore called ‘the media bubble’, you just don’t matter.

But Sally Crossing knew what was important, never took no for an answer, never gave up until she had achieved her objectives. After the interview aired there was a flood of similar complaints from people who had also experienced substandard private hospitals.

Sally Crossing was a quiet achiever, who calmly and efficiently got things done.

Personal values

Sally was always energetic and motivated by the challenge of seeing that something could be done. Ascribing her ‘urge to lead’ to’ an ability to ‘make things happen’ she described herself as

A bit of a driver.

Sally also emphasised the importance of respecting the interests and skills of others, and ensuring that their talents are fully utilised.

‘The way we work is to spark off and learn from each other.  It’s very rewarding and exciting to do it that way, and you can have confidence that you are doing the right thing.’

Her advice to other women was that they need to find something that really:

Turns you on – for which you can develop a passion.

  Without a passionate commitment ‘it’s not really going to go anywhere.’

Palliative care

Towards the end of her life, Sally wanted to make sure that her dying will be consistent with what she wants, and not decided by others. She shared her story and reasons why she feels so passionately about this issue in a powerful video for Dying with Dignity NSW. On the Australian Broadcasting Commission’s Q & A show in 2015 she remarked:

“I want the supreme comfort of knowing my life can be ended if and when I decide enough is enough, and I’d like to seek some professional help, as I do for other decisions. I respect the rights of other people who do not seek this option, but not their attempts to prevent me from making my own life and death choices.”

The President of Dying with Dignity NSW, Sarah Edelman, says “We are extremely grateful for Sally’s willingness to speak out publicly on this issue. The knowledge that one will be able to control the manner and timing of one’s death would be hugely reassuring, and reduce the angst associated with this stage of illness. Why should people be denied this fundamental right?”

On 28 December 2016, Sally Crossing passed away surrounded by her family. She touched many people’s lives in a positive and constructive way. I am privileged to have known her.

Vale Sally Crossing.

© Wikihospitals January 2017.

References

Wikipedia
Women of Australia
Health Consumers NSW
Janeelix
Sydney Morning Herald
Death with Dignity NSW