First of its kind tool providing support for people with spinal cord injuries

A valuable digital resource has been launched to help people with spinal cord injuries troubleshoot some of the complex health challenges that can arise after injury.

The Spinal Cord Injury Health Maintenance Tool, which includes a website, smartphone app and hardcopy booklets, has been designed to empower people to self-manage their health-related needs and maintain a high quality of life.

Launched by NSW Health Secretary Susan Pearce AM, the tool provides reliable, evidence-based and easy-to-understand information to help those with spinal cord injuries and their primary health care providers manage injury related concerns.

It features interactive tools such as a quick health checker, collaborative care plans, symptom trackers and goal setting programs.

The tool also offers self-management strategies focusing on mental health and wellbeing, as well as bladder, bowel, skin, pain and autonomic dysreflexia concerns.

Kolling Institute and University of Sydney researcher Professor James Middleton, who was instrumental in the design of the resource, said the tool had been written through the lens of someone with a spinal cord injury, so individuals can learn what they need to do to stay well and what action to take when health issues arise.

“The tool was developed following genuine, multi-method consultation with meaningful engagement with a diverse stakeholder group,” he said.

“This process ensured the voices of individuals living with a spinal cord injury and their healthcare providers were incorporated into the design of this important new resource.

“During the consultations for instance, we found there was a need to place a greater emphasis on mental health and wellness, so an additional component on mental health was included.

“We are very proud of this resource which will provide practical and easily accessible information to those with a spinal cord injury.”

Consumer reaction

The resource has been welcomed by consumers. Brendan Gardiner lives with a spinal cord injury and spoke at the launch about his experiences using the tool.

He says it provides information that keeps him ahead of the next problem.

“It’s comforting to have an extra resource I can go to when I have a problem, and information that helps me avoid future problems.” Brendan said.

Partnering for impact

The freely available tool was developed in partnership between The University of Sydney, Royal Rehab, the State SCI Service, the NSW Agency for Clinical Innovation, and with funding provided by icare NSW.

Group Executive of icare Lifetime Schemes Dr Nick Allsop has welcomed the development of the tool, particularly given the complex health needs of people living with a spinal cord injury.

“The website and app empower people to expertly and proactively manage their health needs independently, and with their care team. We want people with a spinal cord injury to have improved quality of life and health outcomes.”

To find out more about this comprehensive resource visit the Spinal Cord Injury Health Maintenance Tool website.