Introduction by Croakey: Politicians who have lived experience of the healthcare system can make powerful advocates for reform. Emily Suvaal, who was elected to the NSW Legislative Council in the March election, brings deep and wide-ranging experience, as a patient, nurse and unionist advocating for change.
Delivering her inaugural speech, Suvaal recounted her long and at times disempowering experiences with the health system when having treatment for an eating disorder as a young person.
She also described her experiences with type 1 diabetes, and the importance of wraparound community healthcare and access to stable, affordable housing, as well as her gratitude to many healthcare professionals.
“I want to say to that terrified 11‐year‐old who has just been told they have type 1 diabetes, to the 14‐year‐old with anorexia nervosa who feels their illness will never get better, and to the health professional who, for years, has gone above and beyond for their patients: there is hope,” she writes below in an edited version of her inaugural speech, republished here with permission. You can read and watch the full speech here.
Speech by Emily Suvaal:
What an honour to be elected to this place. For me, like many before me, it has been both a hard-fought and beautiful journey to be here today, a journey based on the need to fight for change based on my experiences and the people I connected with along the way.
When I was 11, my family remembers a fateful day we all went on a bushwalk.
I was a fit and sporty 11-year-old, but a couple of hundred metres in I demanded we return as I was thirsty and quite upset. That confirmed to my mother something was wrong. I had been more tired than usual, I had lost weight and I had been drinking abnormally large amounts of water.
I was taken to my GP. I had a blood test and within 48 hours I was being seen at the old Camperdown Children’s Hospital emergency department.
I was diagnosed with type 1 diabetes, and I spent 10 days in hospital on the Sailing League Ward. I was taught how to count carbohydrates, draw up insulin and inject myself, test my blood sugar level, and eat a low-sugar, reduced-fat diet.
That was the start of what became an unhealthy relationship with food and numbers.
At the age of 14, I was diagnosed with anorexia nervosa. In the care of the adolescent medicine unit at The Children’s Hospital at Westmead, I was looked after by a team of multidisciplinary healthcare professionals: specialist paediatricians, psychologists, psychiatrists, dietitians, physiotherapists, occupational therapists, pharmacists, play therapists, social workers and clinical nurse consultants, along with the endocrine team.
I was admitted approximately – and I say approximately because my memory of this time is very vague – 10 times to the children’s hospital in the two years after I was diagnosed.
I completed year 10 at high school but significantly deteriorated shortly after and would never be well enough to return. My last recollection of school was sitting in front of a piece of paper for hours agonising over a sentence I could not perfect.
My alma mater, the wonderful James Ruse Agricultural High School, has been the top-performing high school in this State for many years, as it was when I attended. It was, and is, a fantastic public school with teachers and students of the highest calibre. It was quite unheard of to not finish high school there, so I was hard on myself about that for many years.
However, I can attest that the HSC is not the be-all and end-all, and, in fact, you do not need an ATAR of 99, or even an ATAR at all, to do great things.
At the age of 16, children currently face being transitioned across to the adult health system. They can also discharge themselves from hospital against medical advice.
When I turned 16, I was appointed a legal guardian under a guardianship order, basically so that I could not sign myself out. It also meant that my treating health professionals did not need my consent for changes to my treatment, or to initiate treatment; that was my guardian’s role.
That felt very disempowering and, in some ways, counterproductive as it fuelled my determination to undermine treatment even more. Where there was a will, there was an anorexic way, as Mum always said.
I was very reluctant to head across to the adult system at Westmead Hospital and had made little progress, so my mum sought out a private psychiatrist who specialised in eating disorders. I was looked after by Professor Peter Beumont and treated in private inpatient mental health facilities for some time, until I became too medically unwell.
Then I was treated at the Missenden Mental Health Unit at Royal Prince Alfred Hospital. It is a place that no longer exists but is etched into my brain. It was a terrifying experience for a vulnerable 16-year-old girl to be in a general adult psychiatric unit. I recall everything about that place.
As I said before, my memory of that time is very vague, but I remember everything about that place. I recall the lino floor; the smell; and the bare room with a single metal-frame bed, tatty carpets and a tall skinny cupboard for all your worldly possessions. I recall the locked ward; the shared bathrooms with a hole in the door where the lock had been removed; the 12-foot-high metal fence that I once attempted to climb in a desperate bid to escape; and the seclusion room with padded walls.
I am eternally grateful to the health professionals who worked there, and who I fought so hard in their efforts to treat me, because they kept me alive.
In and out of healthcare
Over the course of my illness, I had hundreds of hospital admissions ranging from a few weeks to a year in length. I was treated in public and private mental health units and medical wards, and had the occasional stay in an intensive care unit when I was severely unwell. Our public health system looked after me when I was at my worst.
I was admitted mostly as an involuntary patient under the Mental Health Act. Being appointed a guardian felt disempowering but being scheduled under the Mental Health Act was devastating every time. I recall monthly mental health tribunal meetings, being trotted up to the first level meeting room in the Missenden unit.
It was often the only time I had been anywhere but the ward, or its concrete courtyard where the smokers gathered, in that entire month. It always felt a futile exercise as my admission status invariably never changed from involuntary patient to voluntary patient until immediately before I was discharged.
Almost a decade on from my diagnosis, and in my early twenties, I had spent several months, again, as an inpatient in the Missenden unit with no improvement. Medically stable, but still extremely compromised and underweight, I had severe osteoporosis and heart issues. I faced being discharged to a women’s refuge.
Stable, affordable accommodation
A social worker at the Missenden unit at the time, Diana Priest, one of the many health professionals to whom I am eternally grateful, advocated for me to access supported accommodation as an alternative. After some initial reluctance from the provider, who had never accepted someone with an eating disorder before, I had a temporary home in the inner west with a case manager.
Having stable, affordable accommodation that had links to public transport and was close to my healthcare team was crucial in those early stages of my recovery. It enabled me to recover to an extent that I could re-enter the workforce – something that put structure and purpose back into my life.
I commenced work in a local retail store, initially for a few hours a couple of days a week as lunch cover. I caught the bus there and back. It was not a lot, but it gave me a reason to get out of bed and ensure I was fit to turn up, and it gave me a responsibility to someone other than myself.
Regular, supportive healthcare
Several remarkable health professionals played important roles in my reintegration into the world in the years that followed.
My GP at the time, Dr Aline Smith, is someone I particularly want to thank today. Aline saw me sometimes twice a week during my recovery years. I attribute a large part of my success to her treatment, care and availability. Aline was with me as I navigated the years I had missed and the many stress fractures I endured along the way.
Quality, accessible and timely primary care is the cornerstone of our health system in New South Wales. The outpatient care I received from the team at Royal Prince Alfred Hospital was also an example of how important good wraparound community healthcare is in recovery from mental illness.
The dietitian whom I saw regularly, my psychologist and psychiatrist played important roles in my recovery.
The magnitude and cost of my healthcare treatment is something that has never been lost on me. I am so fortunate to have received the care I did from the wonderful healthcare workers looking after me because it kept me alive.
Fewer than 50 percent of people with anorexia nervosa recover, and it has the highest mortality rate of any mental illness. Almost 550 Australians die every year because of anorexia nervosa. I have never lost the drive to give back to those who gave me so much.
In my recovery years I went on to participate as a consumer representative with lived experience of anorexia nervosa in many forums. I was proud to play a small part in the steering committee setting up the Peter Beumont inpatient unit in the Professor Marie Bashir Centre at Royal Prince Alfred Hospital. The Peter Beumont unit is a nine-bed inpatient ward dedicated to the treatment of eating disorders.
It means a lot to me that that place is safer and more supportive, and different to my experience of adult inpatient mental health units as a 16-year-old girl. It is a far more appropriate place to treat young people with eating disorders.
The Missenden unit is now just a memory, having been demolished. Pleasingly, the Charles Perkins Centre stands proudly in its place and houses Australia’s national institute for eating disorders, the InsideOut Institute.
In the final stages of my recovery, I decided to give tertiary education a shot. I started out with a bachelor’s in medical science, where I rediscovered my love of chemistry and maths.
There were few things more satisfying than having a question, completing pages of equations and working systematically down to a final answer, and for that final answer to be correct. Science is awesome.
I changed my degree to a bachelor’s in forensic science and applied chemistry so I could learn more about chemistry, which I really enjoyed.
However, halfway through the degree I changed my mind again because I decided I really wanted to work with and help people. My older sister had recently completed her nursing degree and I was inspired and encouraged by the work I saw her do, along with my experience of the many nurses who had looked after me.
After six years at university, I finally completed a bachelor’s in nursing, one of my proudest achievements. I had started and not finished many things in my life previously.
After graduating, I worked as a registered nurse at The Children’s Hospital at Westmead, where I had the privilege of caring for children and families on the cardiac and day surgery wards. I will never forget them.
Taking home a newborn baby from hospital is a terrifying and exciting time, anyone will tell you.
But, imagine, a couple of days after you take your baby home, they turn blue, stop breathing, are rushed back to hospital and have a postnatal diagnosis of cardiac illness. They then require emergency open-heart surgery and must stay in intensive care and on cardiac wards for weeks, or months, before eventually going home again. Some may even have to return for follow-up surgeries in the time ahead.
That was the reality for the families I looked after, and their resilience in the face of adversity is something I will never forget.
Advocating for change through politics
I joined our great Australian Labor Party (ALP) halfway through my first year of working as a registered nurse. It was clear to me that change was needed to ensure I could do my job safely, effectively and to the standard I expected of myself.
I wanted to become involved, to advocate, and to change policy and legislation at a higher level – the level of government. I had no idea what I was getting myself in for.
The honourable member Peter Primrose MLC is someone much respected across the political spectrum, and I am privileged now to be working with him in this capacity all these years later.
Having been involved in the party for a while, and wanting to truly change the world, I took some time away from nursing to do something a little different and work on an election campaign for NSW Labor. There I formed a great appreciation for the dedication, commitment and work of our party officers.
I then worked briefly for Dr Mike Freelander, MP, the Federal member for Macarthur. Dr Mike is a highly regarded paediatrician who epitomises everything I admire in both a healthcare professional and a person – he is humble, generous, and compassionate. He is also good at giving well-intended and completely unsolicited life advice. I thank Dr Mike sincerely for the opportunity to work for him, and for all the unsolicited life advice that was, in fact, quite useful in the end.
Most recently I had the privilege of working for the NSW Nurses and Midwives’ Association as an organiser and registered nurse. A steadfast trade unionist, I organised nurses and midwives in the Hunter New England Local Health District, private hospitals and residential aged-care facilities.
With the assistance of my colleagues, and in spite of the unfair industrial laws we faced – which must be addressed by this place – we had a few much-savoured wins. They were hard fought and frustrating battles, but the nurses and midwives I worked with were unwavering in their advocacy for patients. Like me when I joined the party, they just wanted to do their job safely, effectively and to the standard they expected of themselves.
Aged-care workers are pillars of our society. I am thrilled to see our Federal Government take steps to pay them what they are worth, although there is much work to do. I look forward to being part of a Labor Government in this place that will address the many wrongs inflicted on workers, especially our essential workers, over the past 12 years.
I acknowledge all the union secretaries in New South Wales who have fought and advocated tirelessly for the rights of workers, particularly through the COVID pandemic.
Along with my commitment to advocate for workers in New South Wales, I note my commitment specifically to the people of the place I now proudly call home: the beautiful Hunter Valley. Our region is one of significant importance to this state and country.
The people who live and work in the Hunter deserve a state government that will represent them and the best interests of their region and all of rural and regional New South Wales. I intend to do just that.
Destigmatising mental illness
I also commit to work in this place to further destigmatise mental illness, particularly eating disorders.
Eating disorders are serious mental health illnesses that impact between four percent and nine percent of our population. There are, sadly, still many inaccurate assumptions about eating disorders that impact the treatment people receive.
Eating disorders are not a diet gone wrong, they are not attention seeking and they are certainly not a phase. No-one wakes up and chooses to develop an eating disorder, just like no-one wakes up and chooses to become depressed or get type 1 diabetes—or any other illness, for that matter.
While the rates of other mental illnesses have stabilised since the height of the COVID pandemic and are returning to baseline, eating disorders do not seem to be following the same trend.
The gaps and confusion around hospital-based care for adolescents between the ages of 16 and 18 still exist, as they did when I was unwell more than 20 years ago.
There is an urgent need to transform our health system from a late‐stage to an early‐stage intervention focus.
It was only nine years ago that New South Wales began its long road to rectifying the exclusion of treatment of eating disorders from our health system. That may seem like an exaggeration, but only nine years ago the vast majority of people with an eating disorder needing treatment in this State did not receive it.
In late 2013 the then New South Wales Minister for Health announced the first policy directive for this illness group, stating it was core business for our health system. Since then, progress has been made, but we are not there yet – nowhere near it.
It is far less common today to be turned away from an emergency department in New South Wales when you have an eating disorder and are critically ill, but it still happens. It is far less common to be denied an admission to hospital for urgent medical care and nutritional rehabilitation, but it still happens. It is less common to be discharged from hospital with no plans for treatment in the community, but sadly that still happens often.
And unfortunately, in this state and in others all around the country, it is very common to be unable to find good, effective treatment for eating disorders in the community. It is very common for families to search for months to years for health professionals that are skilled and can help.
It is also very common to find those health professionals only in private practice and have to pay large, out‐of‐pocket gaps when Medicare rebates cover only a fraction. That means discrimination is built into the system and only the wealthy receive care.
But eating disorders are curable. For most, there is a relatively brief, evidence‐based, community care treatment package that works. But it is still the case that most Australians will not receive it, and we must change that.
Significant investment in community care teams is needed; coordination of care pathways, so that people are not searching the system in vain; training of our workforce to deliver effective treatment; and the development of tools and methods to make sure evidence is translated into high‐quality care.
My heartfelt thanks go to those that are still working tirelessly in the field of eating disorders. The same specialists that were there and looked after me all those years ago are still there now. I know we urgently need more of you, and the contributions you have made to the treatment and the lives of so many over the years, including me, is immeasurable.
I do not know of anyone else with type 1 diabetes who has served in this House. Living with type 1 has profoundly impacted the person that I am today. People with type 1 make, on average, 180 additional decisions per day. They have a reduced life expectancy by an average of 12 years. They are four‐and‐a‐half times more likely to die young. They have a 10 times higher risk of cardiovascular disease and have a higher risk of complications in pregnancy.
On average, 95 percent will develop eye damage, 50 percent will develop nervous system damage, 40 percent will develop kidney disease and 25 percent will develop another autoimmune condition. One in four will also have some form of mental illness.
Growing up, I lived in fear I would lose my sight or my feet. Fortunately, neither has happened yet – touch wood.
Need for accessible health technology
Continuous glucose monitoring and hybrid closed loop insulin pump systems, like the one I use, have reduced the mental burden and complication rates associated with type 1 diabetes.
However, we have much work to do in ensuring this technology is accessible and affordable to all who would benefit from it. This technology enabled me to do shift work as a nurse.
It also enabled me to have two beautiful healthy children that I thought I never would.
But I can only access an insulin pump through private health insurance or by paying $7,000 to $10,000 outright, meaning that again inequality is built into the system. Everyone deserves access to this technology. It is life changing.
I want to say to that terrified 11‐year‐old who has just been told they have type 1 diabetes, to the 14‐year‐old with anorexia nervosa who feels their illness will never get better, and to the health professional who, for years, has gone above and beyond for their patients: there is hope. This Government cares about you, and I will fight every single day in this place for you.
A few more final words of thanks before I finish. I acknowledge the late Professor Peter Beumont – my psychiatrist who insisted, much to my frustration, that I would recover. He would say to me in his South African accent – and I can still hear him say it – “Emily, you are not a chronic anorexic. You will recover, and you will go on and do great things with your life.”
Every time I saw him, he would remind me of this. He would also remind me that if I channelled the determination that I was throwing into anorexia and destroying myself into something good, I would be unstoppable.
His words have stayed with me and are a source of encouragement that I draw on in times of doubt.
I thank my family, my father, mother, siblings and husband, Jay. Lastly, my two darling boys, Ethan and Caleb. I hope I can make this world a fairer and kinder place for you. Without you, this all counts for naught.
To you, Mr President, and to the House, I come humbly, with hope and optimism for what lies ahead. I will do my best. Thank you.
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