Lee's story: How Peer Support is changing recovery for the Spinal Cord Impaired (SCI) community

Lee Taniwha will always remember the fear he felt leaving the Auckland Spinal Unit.

“I was terrified,” says the 28-year-old from Ōtara. “I had no idea what life was going to be like in the outside world.”

Lee had survived a life-changing accident. As a 13-year-old, he jumped into his cousin’s swimming pool and misjudged the depth of the water.

He broke his neck on impact and for several minutes he thrashed about at the bottom of the pool unable to move. “I was counting the seconds I had left. I was sure that was it, that I was going to die. I was hanging on until my last breath.”

Lee went into emergency surgery where the surgeon inserted screws into his skull. He was put into an induced coma to save his life.

He spent the next month at Auckland Hospital before a five-month stay at the Auckland Spinal Unit in Ōtara.

“I’m lucky to be alive,” he says. “Someone up there must’ve been watching over me.”

“The hardest part of my rehab”

After making great progress in the Auckland Spinal Unit it was time go home. Lee didn’t feel ready.

“It’s a hard journey. You know you’re different to everyone else. You’re totally isolated and don’t have that support around you that you’ve relied on for months. It is scary.”

He says returning home can be the hardest part of a person’s rehabilitation. “Your whānau want to help but they don’t understand,” he says. 

“When you go back to your community or home, it’s quite foreign for people to talk about things like bladder or bowel or skin issues. So you feel different and isolated.”

Lee lives in South Auckland. He says the feeling of being lonely or isolated would be even worse for those with an SCI living in rural parts of New Zealand.

“What are they supposed to do? Who are they going to talk to? You see no one else like you and you feel completely alone.” He says there is no substitute for the support of lived experience with an SCI.

“When you go through a traumatic event like damaging your spine, it’s nice to have someone else who is going through the same thing.

“They know what you are going through and that is exactly where the conversation starts from.”

Meeting people at a life changing moment

Lee has gone full circle.

After being a patient at the Auckland Spinal Unit, he now works for Spinal Support NZ as a Peer Support worker.

Peer and Whānau Support is a service where people with lived experience of SCI help mentor and support a person following their injury. They help them get familiar with their new life.

“It’s a huge privilege for me,” he says. “You are meeting people at a life-changing moment. It’s good to be able to listen and make a difference. I try to help them find hope again.”

He says the months of adjusting to life as a tetraplegic with the help of the Peer Support team at the Spinal Unit were invaluable.

During his stay in Otara, Lee met a number of men who mentored him and changed his life. One day, mouth painter Wayne Te Rangi pulled up to talk to Lee.

“He told me what would happen if I didn’t look after my body,” says Lee. “But he also told me what was possible – that he had travelled the world and did all of these exhibitions with his painting, I was like, ‘What?!’

“This guy had no function in his arms and he had very limited mobility, only shoulders and above and this dude is doing that? He was living a full life. That really shifted my mindset and changed my perspective on what is possible.”

A life changing investment

We have recognised the value of Peer and Whānau Support. We are investing $1.3 million over the next two years into the New Zealand Spinal Trust and Spinal Support NZ Peer Support Programmes.

New Zealand Spinal Trust Chief Executive Hans Wouters says it’s a momentous announcement.

“This is without a doubt the most significant support for the collective spinal cord-impaired community in New Zealand since ACC's inception in 1974,” says Hans.

“This is a very important commitment that will profoundly benefit the lives of serious injury customers and their whānau.”

Peer Support currently operates in the Auckland Spinal Rehabilitation Unit and the Burwood Spinal Unit in Christchurch.

This investment will change that. The Peer and Whānau programme will extend across 18 regions from the far north (Whangārei) to the deep south (Invercargill). It will also include up to 30 community peer support staff employed on a casual basis.

All regions across Aotearoa will have at least one Peer Support worker. The investment will support a coordinated network of 20-30 fully-trained community peer support staff.

It will many more community volunteers with lived experiences of spinal impairment.

ACC Minister Carmel Sepuloni says Peer and Whānau Support is an essential service for people disabled by a spinal cord injury.

“Extending this support across Aotearoa makes sense, and ACC’s investment will make a huge difference to the hundreds of New Zealanders who suffer a serious spinal injury each year,” she says. 

The Government recently announced a new Ministry for Disabled People and committed to taking steps towards making Aotearoa more accessible through a new framework and standalone legislation. 

“These actions once fully realised will also provide better support for people who become disabled through life changing injuries.” 

Minister Sepuloni says the New Zealand Spinal Trust and Spinal Support NZ have been doing an outstanding job for a long time.

“I’m looking forward to seeing the difference it will make to the people whose lives are turned upside down by spinal cord injuries.”

A game changer for the SCI

Lee believes the increased support will be “a game changer” for the SCI community.

“This investment will allow more people to have those important conversations,” he says.

“This is great acknowledgment from ACC of the role that Peer Support plays. At the moment those conversations are organic.

"They rely on someone having the good fortune to be alongside someone who has experienced what you are going through and are willing to share their experience.”

“This ensures people are getting sustained and ongoing support.”

Lee says it’s been a challenging year in Auckland with COVID-19. It has been hard to stay connected with patients. But with this announcement he has hope for better times in the future.

“There is no doubt that this expansion of the Peer and Whānau Support programme will deliver better outcomes for many New Zealanders living with a disability,” he says.

“I want to be part of that and help people find their future after they’ve had a life-changing injury.”

ACC Investment into Peer Support Programme – by the numbers

• There are approximately 5,000 New Zealanders living with spinal cord impairments.
• Around 220 people sustain a permanent spinal cord impairment in New Zealand every year.
• Approximately two thirds of these are accidents and one third are health-related.
• ACC will invest $1.3 million into Peer Support over the next two years.

The Peer and Whānau programme will extend across 18 regions from the far north (Whangārei) to the deep south (Invercargill), with up to 30 community Peer Support staff.