Liz Newton Agency for Clinical Innovation | Patient Partner
Liz is Patient Partner with the NSW Agency for Clinical Innovation (ACI). Her role is to build capability within the organization and its partners around partnering with consumers in health care design and delivery. Prior to starting with ACI she had 18 years’ experience working with Hunter New England Local Health District (HNELHD) in education and lived experience consumer partnership roles. During her time as Senior Consumer Advisor with HNELHD she set up the first Consumer Participation Unit in the state; Focused on systemic advocacy to drive human-centred health care; Co-led innovations and reform including Police and Ambulance Early Access to Mental Health Triage via Telehealth, the Hearts in Health movement and Towards Zero Suicide.
Liz has lived experience of mental illness (complex trauma), suicidality, and is a survivor of domestic and family violence. This experience spans across her lifetime and is what led her to focus her energies in the field of consumer partnership and engagement. She is a storyteller and uses human experience to bridge the clinical and operational world of healthcare to the personal, individual world experience.
Session title: What do staff need to be open and willing to engage in two-way feedback?
My experience of person-centred care
I was 33. Almost 16 years ago. It was winter – I remember because the dark nights had drawn in. Suicidal thinking had been present for six months or more, and while I’d mapped a plan, I was ambivalent about seeing it through. I recognised I didn’t really want to die; I just didn’t want my life anymore. Perhaps what I yearned for was a Sleeping Beauty-like awakening from a deep and peaceful slumber, into a fresh new technicolour world where the sun shone, the birds sang, and the world made sense to me. It didn’t terrify me anymore. I was in a holding pattern – sort of trapped by my own inertia and disengagement from everything. Or at least that’s how I can see it now.
I had no one reliable to talk to about things – not honestly. I skirted around the edges with some friends, but I was worried what they would do if they knew the true extent of what I was thinking and feeling. I had no regular GP – the two I’d previously connected with had moved away.
At the time I’d started to experience fainting episodes. I’d be in situations where suddenly, I’d feel dizzy, lightheaded, my ears would ring, and then the next thing I knew I’d sink to the floor for a few seconds. Sometimes I’d come to with my dog sitting there staring patiently at me. It wasn’t bad enough to seek help – I assumed it was low blood pressure. But then one day it seemed it was bad enough.
I was walking past the police station in the regional city where I lived, heading back to work after lunch. I remember thinking I’d caught a glimpse of someone from my past – further down the street. Someone I was afraid of. I remember trying to speed up to get back to the office. The next thing I knew I was laid on the pavement with a couple of police officers crouched down next to me, asking if I could hear them - tell them my name. I struggled to sit up but felt very woozy. One of the passersby who had notified the police said she thought I banged my head. The police asked me to try and keep still, that they had called an ambulance to take me to hospital and rule out any injury. I was mortified at the idea and tried to negotiate out of it – embarrassed and ashamed at all the mounting fuss, people looking and listening. But they were firm, and the ambulance came.
The ED staff administered various tests. Blood tests, no doubt tests for drug use, I was wired up for an ECG, but apart from very low blood pressure, they found nothing. No one said anything to me and I felt like the imposition I knew I was. They gave me a referral for a CT scan, and I was discharged into the darkness to find a taxi back to my dog and my empty house.
The following day, as instructed, I went to the radiology department. They completed the scan and I was told to wait in a small consulting room between radiology and the ED. I could hear and feel the activity down the corridor, but other than that I was alone. The room was empty bar for two chairs and a white board. The only sound came from the fluorescent strip-light crackling and winking every few minutes like a cliche. After what felt like three alternate lifetimes had passed, a male doctor swung into the room. I don’t remember him as much as I remember his energy. He may have had a beard and glasses – I don’t know. But I DO know he felt kind. He pulsed with an energy that was calm, considered, consistent. He felt safe.
He pulled the other chair over and positioned it close to mine – in front but slightly alongside. He then sat and bent forward with his elbows on his knees, his brow furrowed. Then he sat up and he looked at me and told me his name. He told me he was a trained GP but did the occasional shift in the ED. He’d seen my test results and wanted to understand what had been happening. He asked me my name – no he asked me what I liked to be called. I appreciated that. My father would call me Elizabeth and that always made me feel dread. I told him to call me Liz. I told him about the fainting and that I didn’t know why it happened. He asked me to explain what happened in the lead up to these events… I’m not sure, but when it happened yesterday, I had thought I had seen someone from my past that scared me. He listened. His eyes on me the whole time. He listened. He then asked me a series of questions where I had to rate what my thoughts and feelings were about several things. I later learned this was the K10 depression test.
Next, he stood up, took a marker pen from his pocket, and swivelled the white board around to face us. “Tell me about your life Liz – you tell me, and I will draw it up here.” I asked him what he meant. he explained he wanted to know about where I lived, who I lived with, where my family were, what my hobbies were, who my friends were. So, I talked. He occasionally asked me another question or invited me to elaborate. After about 20 minutes I ran out of things to say. Up on the board was a picture of my workplace, my house, my dog, and my friend Kathryn. That was all. I remember feeling deeply sad. As though the thing I knew deep within was suddenly shared knowledge – making it real. A fact. I was alone. My world was very small.Gently he started to speak. He told me the answers I’d given to the questions indicated I had major depression. He felt the fainting was anxiety and stress related. As we’d unpacked the events that preceded the fainting, it made sense. I remember saying I didn’t have other symptoms of panic though, and he said he thought this was different to a panic attack – perhaps more likely a trauma response. I remember him saying that hearing my answers, learning about my life, seeing how alone and lonely I was, it wasn’t a surprise to him. I told him about the seriousness of my suicidal thoughts – that they were there all the time. He thanked me.
I let him make a plan. I was grateful to just be guided in that moment. He asked my opinion about everything. I was to start taking antidepressants, he located the last GP I’d had a connection with and had a conversation with her while I was sat there.
I remember thinking he was a magician to make that happen in real time.
She made an appointment with me. He then rang my work, spoke briefly to my boss, and handed the phone to me. We planned for if things felt desperate in the time between leaving him and seeing my GP. He then said that my whiteboard could and would be filled with pictures again one day soon – that I was now on the road to making that happen. He then thanked me, and he walked me to where the taxi’s wait outside the ED.
In the weeks that followed, I did all the things, followed all the instructions, went to all my appointments, joined a boxing gym, started yoga, and told all my friends, and my family what had happened and how I was feeling. I have never attempted suicide since, and I use that doctor’s methods time and again to inventory where my life is when things become unstable again.
I never saw him again. I never heard from him, and sometimes I question if he was real or a figment of my imagination. His engagement with me was flawless, he read me like a book and understood instinctively the questions to ask and the nuances in my response. He did not dismiss me or make me feel small, problematic, or a time-waster. He saw potential in me. He saw potential FOR me.
He saw me first, all of me. As well as the problems and health issues I brought into the room. He understood that despite being at my lowest ebb I had strengths and the possibility to reclaim my life – once I understood how I got to where I was. He held me in positive regard, there was eye contact, he laughed at my stupid, weak jokes. He gave me the sense he was learning from me as much as I from him. He treated me like his equal. And most of all, he held hope and optimism for me when I could hold none for myself. Real or not, he was an angel and my life pivoted forever on account of his time with me. That is person-centred care.