Making Connections

Lifelong health care following spinal cord injury

David Andrews, co-ordinator of the State Spinal Cord Injury Service, asked whether there sufficient information available to consumers about life long health needs.

”Access to good life long health care and illness prevention after spinal cord injuries is very important to ensure that people are able to enjoy all aspects of life”, he said.

“People with SCI have specific health needs such as looking after bladder and bowel function, and managing skin care but also face the same issues as all members of the community such as weight gain, growing old, trying not to smoke, the need for exercise and understanding what a good diet consists of.”
 
Andrew Murray, a registered nurse at ParaQuad NSW, who also has a spinal cord injury, felt that the key to maintaining health is good basic knowledge and recognition of personal responsibility for a healthy lifestyle. Conversely, ignorance of health stressors, ignoring symptoms of potential problems and a passive approach to health care consumption are the greatest threats to long term wellbeing.

Ashley Craig, a psychologist and researcher at the University of Technology, Sydney, suggested that one of the most important aspects in long-term health following SCI has to do with maintaining a healthy psychological approach.

“Knowledge is one thing, but having the motivation and the energy to proceed with a healthy lifestyle takes considerable effort.”

Deni Gliddon from Spinal Cord Injuries Australia pointed out that lifelong health care is frequently compromised by the availability of suitable equipment and personal care, especially as someone's condition changes.

“There appears to be insufficient funding to provide an upgrade in hours of care and for equipment. This is often compounded for people living in country areas.”

Georgia Cairns, clinical services manager at ParaQuad NSW, made the point that while health issues can significantly impact your ability to enjoy your life it is also burdensome to have to keep track of ongoing checkups along the course of a lifetime. For this reason people often ignore health issues until they present as a problem. She asked whether people with a SCI would appreciate a service that regularly reminded them when aspects of their health should be reviewed so that they could focus more on the other parts of their lives.

Tony Leggett, peer support officer at Spinal Cord Injuries Australia, agreed that people do want to focus on the non-health aspects of their lives and will turn off if they feel they are being lectured at too much. How to strike a balance and get the information across in an accessible yet non-intrusive way is something that needs to be explored.

Computers, IT and the internet were seen by many participants as having potential as a means of providing health information. Deb, whose husband has a spinal cord injury, thought that regular updates in magazines and online forums could be a good idea.

Peter, a C5/6 quad, lives on his own 10 miles from his closest neighbour. He thinks that the computer/internet is the greatest thing ever to have happened to people with spinal cord injury regarding research and information.

“In my opinion a SCI can never know too much about the changes that have been done to their body by their injury. I think the use of computers and the internet lends itself well to SCIs (particularly quads) being able to access the information they need.”

“Over the years we have found out that you get your info quite by accident. It would surely be great to know things prior to them happening. Quadriplegia is a complicated thing to live with for the person and the families. Having other health issues thrown in making life even more complicated,” Deb said.

Lyndall Katte is a physiotherapist at Prince of Wales Hospital providing outpatient services for people with spinal cord injuries anything from 6 months to 50 years post injury.

”People with spinal cord injuries have many challenges when it comes to maintaining a healthy lifestyle - these challenges are not just the result of the physical impact of their injury but also because many fitness facilities have poor access or inappropriate equipment,” said Lyndall.

”There is a team of clinicians here at POWH who are interested in developing a program of guidelines for gymnasium managers and staff to improve the accessibility of these services. The program would consist of a circuit style exercise program with a strength/stretch/stability and cardiovascular training component as well as health information package. We hope to implement this in the home or gyms throughout metropolitan Sydney.”

There was an extended discussion with Tony Leggett, Jo Glinsky from Moorong Spinal Unit, Jason J, and others about exercise, including how to balance cardiovascular fitness with future shoulder deterioration. The need to see a physiotherapist and have a personalised program worked out for you is an important thing to do to maintain fitness and minimise pain.

Tony Leggett pointed out that there is an “information overload” during the rehabilitation period and that much of what is taught during this time gets forgotten later.