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About The Health Maintenance Tool

The Health Maintenance Tool

This Health Maintenance Tool is a guide to help you understand and troubleshoot problems you may experience throughout your spinal cord injury journey.

People with spinal cord injury have complex health needs, not only following their spinal cord injury, but throughout their life.  It’s important for you to learn how to self-manage your health-related needs and become the expert in your own care.  

Developed by people with spinal cord injury, GPs and expert clinicians, the Health Maintenance Tool provides evidence-based information, tips and tools to help you to proactively manage your health in six key areas – mental health, bladder, bowel, skin, pain and autonomic dysreflexia

A pdf version of the Health Maintenance Tool six health areas can be downloaded here

How to use the Tool

All information in the Tool is designed to work together to support you to

Understand
your body, health and wellbeing
Prevent
problems
Check
if you have a problem
Check how severe
the problem is
Manage
problems
Track
health patterns and problems

Understanding your body, health and wellbeing and how to prevent potential health issues, will empower you to become an expert in your own health needs. 

Being able to identify a problem and check how severe it is, will support you to know what action to take – when best to self-manage and when to manage with the support of a healthcare professional.

Sometimes managing a problem can be challenging because there can be various factors involved. So you often need to use more than one strategy to manage the problem. In some of the Your Health areas you will find a Management Toolbox which provides you with a range of strategies to use, when one just isn’t working.

Quick Health Check

If you are experiencing a health issue, in 3 simple steps, the Quick Health Check tool will help you to quickly identify the problem, check the seriousness of the problem and understand what action to take to manage it. 

Step 1: IDENTIFY the problem
Answer a few questions to help you to quickly identify the problem.
1
Step 2: CHECK the severity of the problem
Check the severity of your problem and determine to what extent your problem interferes with your everyday activities.
2
Step 3: ACTION to take to manage the problem
The answers to step 2, provide you with the recommended action to take to either self-manage or seek support from a healthcare professional.
3

Do a Quick Health Check

Click on the Quick Health Check button in the top-right hand corner to use the automated tool.

Learn more about the Quick Health Check or use the manual version in the Check if you have a problem section of each of the Your Health areas.

Get the Quick Health Check on the SCI Health Toolkit app – download it here.

Diaries

Keeping a diary provides you and your healthcare professionals with a good understanding of your health routine, helps to identify any patterns or specific problems, and helps to inform how best to manage the problem. 

You can download editable pdf versions of the diaries or create digital diaries on your device using the SCI Health Toolkit app.

Care Plan

Your personalised Care Plan provides carers and healthcare professionals with a summary of your current health and care needs. 

You can download the editable pdf version or create a digital care plan on your device using the SCI Health Toolkit app.

Features and resources

This Health Maintenance Tool has many features and resources to help you find the information you need, and to be interactive with your learning and health maintenance.

“We hope the Health Maintenance Tool empowers people with spinal cord injury to expertly and proactively manage their health needs leading to improved quality of life and health outcomes. I recommend this tool to those living with spinal cord injury and those who care and support them, their clinicians and their GPs.”

Suzanne Lulham
General Manager, Care, Innovation and Excellence, icare NSW 

Behind the Health Maintenance Tool

 The Health Maintenance Tool is a product of the SCI Wellness Project, based on recommendations from a report in 2015 evaluating health outcomes for people with spinal cord injury who attended rural clinics. The report highlighted the need to develop a consumer-friendly Health Maintenance Tool supporting self-management and providing consistent information. 

 Development of the Health Maintenance Tool involved a literature review, establishing state-wide expert consensus on management recommendations and consumer engagement in the tool’s co-design and content development. The content of the tool was informed by up-to-date best-practice research and consumers’ perceptions about their health. The Health Maintenance tool provides guidance and recommendations to assist people living with spinal cord injury to self-manage their health needs over their lifetime. In addition, the tool aims to guide primary healthcare professionals and non-specialist clinicians to proactively support self-management in people with spinal cord injury. The tool is accessible to consumers and clinicians. 

What is the SCI Wellness Project?

 The SCI Wellness Project consist of two phases. 

  • Phase 1 (2018-2020) involved development of a pdf version (soft and hard copy) of the Health Maintenance Tool. The first phase was an initiative of Royal Rehab, in partnership with the John Walsh Centre for Rehabilitation at the University of Sydney with financial support from Insurance and Care (icare) NSW. 
  • Phase 2 (2021 to 2023) involved development of a digital solution (website and a standalone app) of the Health Maintenance Tool. The second phase was undertaken by the project team at the John Walsh Centre for Rehabilitation Research, in collaboration with Royal Rehab and NSW Agency for Clinical Innovation, with financial support from Insurance and Care (icare) NSW. 

“Here at icare we have been privileged to be involved in the development of the Health Maintenance Tool to empower people by providing guidance and recommendations for people to timely and proactively manage their spinal cord injury beyond the early days in the spinal injury unit.”

iCare NSW

Acknowledgements

 The project team would like to thank all the consumers with SCI, healthcare professionals (including general practitioners) and staff of the three spinal units in NSW for their contribution to the SCI Wellness Project. 

Project Core Team (Phase 1 and 2)

  • James Middleton 
  • Mohit Arora 
  • Ashley Craig 

 Project Steering Committee (Phase 2)

  • James Middleton, Chair, The University of Sydney
  • Mohit Arora, Project Manager, The University of Sydney
  • Annalisa Dezarnaulds, Prince of Wales Hospital
  • Anne Sinnott Jerram, The University of Sydney
  • Ashley Craig, The University of Sydney
  • Danielle Collins, Prince of Wales Hospital
  • Deborah McConnell, icare NSW
  • Gerard Weber, Royal Rehab
  • Jenni Johnson, Agency for Clinical Innovation
  • Komal Adarkar, Agency for Clinical Innovation
  • Marlene de l’Epine, icare NSW
  • Melissa McCormick, Royal Rehab
  • Priyadarshini Chari, Royal North Shore Hospital
  • Suzanne Lulham, General Manager, Service Delivery, Lifetime Schemes, icare NSW
  • Tanya Fitch, Consumer representative
  • Tony Jones, SCIA and Consumer representative 
  • Tony Lembke, Alstonville Clinic NSW 

Mental Health Working Group (The University of Sydney)

  • Ashley Craig
  • James Middleton
  • Danielle Sandalic
  • Johnny Bourke
  • Anne Sinnott Jerram
  • Mohit Arora 

Partner organisations (Phase 1 and 2)

  • The University of Sydney
  • John Walsh Centre for Rehabilitation Research, Northern Sydney Local Health District
  • Royal Rehab
  • NSW Agency for Clinical Innovation
  • icare NSW

Informant group with Lived experience (Phase 1 and 2)

  • Cobie Moore
  • Emily James
  • Jonathan Tang
  • Sue Jacobs

Funding organisation (Phase 1 and 2)

  • icare NSW

Website and App Developer Teams

  • KYKO Lab
  • Staples VR

We would also like to acknowledge the following people:

  • Dimity O’Leary, Selina Rowe, Vanessa Gasiewski and Trudy McEnearney from Royal Rehab who made a significant contribution to the first phase of the project.
  • Ingrid Horton for her work in designing the pdf version of the Health Maintenance Tool.
  • Charlotte Middleton for her contribution in recording and producing the mindfulness and visualisation videos for the mental health module.
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