“This has been a vehicle for me to express myself.
It’s given me hope, it’s empowered me.
It has allowed me to dream, to come back into this world.” Toni Huls
Nine participants with lived experience, including mental health and addiction, recently completed the LET(s)LEAD Academy, a transformational leadership development pilot programme. Participants shared their individual projects and what they had each learnt from the programme at a special graduation event held at Careerforce’s Wellington offices in March 2020.
In 2019, Careerforce partnered with the Yale University Program for Recovery and Community Health, to support a group of emerging leaders in New Zealand to participate in the programme.
Toni Huls was one of the New Zealand cohort. She is an Intentional Peer Support Worker at Otago Mental Health Support Trust. She has also suffered from a brain injury and experiences mental distress. “It’s been a turning point. I feel really lucky that because of all my trauma experience, I’m able to hopefully make a difference and give a voice to others.”
For the past two years Toni held a voluntary role working in mental health, addiction and intellectual disability with the Southern DHB Consumer Council. She also volunteers as an ‘Equally Well Champion’ supporting individuals or organisations working together to improve people’s physical health outcomes.
The paid Peer Support role came after embarking on her Yale programme journey. “In this role, I walk alongside the person and bring my lived experience. There’s no imbalance of power.”
Toni’s lived experience began many years ago. “I developed an infection inside the brain, encephalitis, that meant I was in hospital for a long time, unable to walk and using a wheelchair.”
Toni missed out on the necessary rehabilitation, due to heading straight home to look after her sick husband. She cared for him for three years, before sadly losing him to cancer. “Because of my brain injury, I couldn’t cook and function. I struggled and my girls had to go into care.”
“It’s been a real challenge even doing what I’ve done. It’s made my life grow and it’s extended me. This is just the start. I want to thank Careerforce and Yale so much.”
The nine-month programme consisted of a 10-week seminar series followed by four months of project work, supported by a mentor. Toni immediately connected with her mentor Dr Helen Hamer.
Helen’s background in mental health nursing and working with people with lived experience connected her to Yale. Already running international conferences at Yale, she was then appointed as a NZ based mentor for the LET(s)LEAD programme.
Toni began thinking about the focus of her project, a core part of the programme. Her brain injury wasn’t diagnosed as early as it should have been because of her mental distress. If diagnosed earlier, she may have been fine. The focus of her study began to take shape.
“When I heard her speak about the dilemma she had, about not being believed,” says Helen, “I advised her, ‘there’s a term for that – it’s called Diagnostic Overshadowing’. I sent her a paper to read, and she just flew.”
According to Toni, her diagnosis was overshadowed by her mental illness. “I wanted to talk to GPs in my area and make the medical profession hear my story. To use my experiences to educate clinicians, doctors and GPs, nurses and peers around mental health and the risk of diagnostic overshadowing.”
“This has been a vehicle for me to express myself. It’s given me hope, it’s empowered me.
It has allowed me to dream, to come back into this world. it’s raised me up and I feel like an equal academically,” says Toni.
“After thirty years of living mentally unwell in a small community and with the associated stigma of discrimination, I’ve realised that lived experience and this course has raised and empowered me. It has also given me a language.”
“The New Zealand health system needs to change from the bottom up. Careerforce and Yale gave me this opportunity and I’m understanding now how I can be more effective and I’m making a lot of changes. Thank you,” says Toni.
Toni was elected to the Southern DHB Community Health Council, an advisory council for the Southern DHB and the Moving Forward MHAID consumer council which enables a stronger community voice from the southern district. She brings to that her years of lived experience of mental distress and disability as well as the family voice. “At the beginning of the Yale programme, sometimes I had imposter syndrome, but via participating in the Yale programme, I soon got over that.”
Helen explains “taking part in the programme is an acknowledgement and affirmation for Toni. For many it was life changing and Toni is a good example.”
Careerforce General Manager Learning Solutions, Rod Bentham says, “Working alongside Yale to bring this programme to New Zealand has been a pleasure; as was sharing the fellow’s journeys at the graduation ceremony. Careerforce hopes there is opportunity to continue the programme in New Zealand in the future”.