We are here to help
Imagine waking up in an ICU bed, hearing doctors and specialists talking about a paraplegic or tetraplegic – and then realising that they mean you … that is a truly life changing moment. It can be daunting, overwhelming, frightening. It will also be the start of a new journey – a life that is different, but not inherently bad. With support from people who truly understand, someone with a spinal cord impairment (SCI) can learn to meet challenges and embrace new opportunities, participate fully in their community and squeeze every drop out of a life that can be well lived.
The New Zealand Spinal Trust (NZST) are the people who offer this support – through the Peer and Whānau Support service, the Vocational Rehabilitation team, and the Resource Centre. We have been doing so for over 25 years, working with people at both Burwood Spinal Unit, Christchurch and Auckland Spinal Rehabilitation Unit. Our admin team is based at Burwood Hospital.
Our mission is to empower people with SCI and their whānau to embrace positive futures. We provide support and information services across NZ to help people overcome challenges, create strong networks, and pursue opportunities following their spinal impairment. We support people to take ownership of their own rehabilitation. The medical care available in NZ to people who suffer an SCI, either through injury or illness, is world class. The hospital teams of specialists, nurses, physios, occupational therapists, etc are professional and skilled. However, they can’t completely know what it’s like to live life with an SCI as most of them have never had to live with such an impairment.
The NZST’s Peer & Whānau Support team have lived experience – all have an SCI, all use wheelchairs, all have been through the process. Our Whānau Peer Support person’s husband is in a wheelchair. They know the ins and outs of living day-to-day in a chair and can share their tips, but more importantly they are truly living positive lives. This lived experience is invaluable as an inspiration, and vital source of information and emotional support for not only the person with the SCI but their whānau and friends too - an SCI affects more than just the individual.
Our Vocational Rehabilitation team is a mix of those with and without SCI, and provides realistic, practical support to return to work, investigate new possibilities, research training options, reassure, and demonstrate that work is not only possible with an SCI – it’s just part of life. Prior to NZST’s early intervention Vocational Rehabilitation programme, less than 13% of people with an SCI returned to work. Now, recent exit surveys have over 90% of our clients stating they feel confident that they will be able to work!
The Resource Centre is a treasure trove of information for the person with the SCI, their whānau and friends, their carer's … even their therapists and nurses. It holds a unique and comprehensive collection of resources on disability and rehabilitation. The team in the resource centre can help with those important questions about what having an SCI entails, available is computer skills training as well as the opportunity to borrow equipment e.g. tablets in order to use social media, zoom and so on. We have produced world class publications and multimedia including ‘Back on Track’ for SCI rehabilitation and ‘Head Space’ for brain injury and stroke.
Each year, approximately 220 people in New Zealand are diagnosed with an SCI. The causes
are many and varied – from a diving accident to a spinal bleed; from a falling hay bale to transverse myelitis; from a mistimed turn on a mountain bike to a spinal tumour. Around 2/3 are caused through an accident, and the length of hospital stay can range from two days to 250+. Approximately 70% of those diagnosed each year are men. And it’s almost a 50/50 split between paraplegia and tetraplegia. There is no real rhyme or reason as to who or how or why, so the NZST doesn’t have a “one size fits all” approach - every journey is different and completely individual.
In 2020, the NZ Spinal Trust was recognised by the Christchurch City Council, with a Civic Award for services to public health.
Approximately 20% of the New Zealand Spinal Trust’s funding comes from public sector organisations such as ACC, MOH and the DHBs. The other 80% is through community support in the form of donations and grants.