When Eduardo Jimenez, 52, comes into contact with the healthcare system, he often encounters providers who struggle to give him the best care. The Toronto father of two has paraplegia with no sensation or movement from the hips down due to a workplace accident 15 years ago – he was an arborist and fell from a tree. 

“I’ve never had to deal with someone who’s paraplegic,” the doctor at a GTA fracture clinic told him when he sustained a spiral fracture of the tibia a decade ago. That injury happened from a fall while transferring himself to his van from his wheelchair. “He didn’t know what to do with me,” says Jimenez. 

An SCI is a complex condition that affects many aspects of a person’s life and health, and the impacts change as they age.

The same thing happened during a routine screening colonoscopy last year – he had to do the procedure twice, as his bowels function differently. “There’s not enough of us out there,” says Jimenez about those with spinal cord injuries (SCI). 

He’s right: there are about 3,600 new SCI cases in Canada every year, and just 86,000 Canadians live with the condition, which affects their mobility and sensation. SCIs can happen as a result of a car accident or fall but also from surgery (such as to remove a tumour near the spine), arthritis or inflammation of the spinal cord.

An SCI is a complex condition that affects many aspects of a person’s life and health, and the impacts change as they age, notes Dr. Cathy Craven, Medical Director of the Spinal Cord Rehabilitation Program at UHN and a Senior Scientist at the KITE Research Institute. “Living with it is as complicated or more than having an organ transplant or heart disease, but many people don’t recognize it.” 

Most patients take roughly a dozen medications and see their healthcare team frequently – as often as 34 physician visits in the first year after injury. At the 10-year mark, most of these patients are managing seven to eight different health conditions, some related to the injury and others due to being more sedentary and sitting in a chair for hours every day. 

“It’s a challenge getting care outside the UHN network,” says Jimenez, because many medical professionals simply don’t have the knowledge or experience to address the myriad complications that accompany SCI. He sees Dr. Craven at the clinic for many of his chronic health conditions – back pain, Type 2 diabetes and low bone density – and finds his care there excellent. 

However, Dr. Craven knows her spinal cord rehab clinic and similar clinics nationwide could do better. Once patients are discharged from rehab after their injury – which can be lengthy, Jimenez was in Toronto Rehab’s Lyndhurst Centre for four months – it can be challenging to find comprehensive care as outpatients; often, they’re forced to piece that care together on their own. 

“We haven’t set up a post-discharge care paradigm” the way the system has for other long-term complex conditions, says Dr. Craven. “Often, the rehab clinic ends up advocating for services for people. We need a better model to support these people over their lifetime.”

A plan for better care

Dr. Craven is looking to fix the gaps at Toronto Rehab and across the country, plus collect more data on this poorly understood patient group. She is the Evaluation Lead of the Spinal Cord Injury Implementation and Evaluation Quality Care Consortium (SCI-IEQCC), a growing national network working to improve and measure the quality of care at spinal cord rehab facilities.

The consortium is comprised of 11 rehab sites nationwide, from Edmonton to P.E.I., with three more set to join soon. Its roots date back to 2015, when Dr. Craven led the SCI-High project to understand the priorities of both patients and healthcare providers regarding rehab after spinal cord injury. 

The project prompted Dr. Craven and her collaborators to establish 11 priority goals and develop a set of quality indicators to allow centres to measure their success.

But change isn’t easy. “When someone knows what a best practice is, why don’t they do it? It’s not usually willful disobedience,” says Dr. Craven. “It’s usually that it’s complicated.” To help everyone in the rehab community get the right staff, equipment, care processes and outcomes to help patients, Dr. Craven and a group of colleagues were awarded an Ontario Ministry of Health Grant in 2019 to start the consortium. It has since expanded, becoming nationwide in 2022, and gained additional funding.

The consortium has a representative at each site – someone who already works there – who shares best practices, measures how well the site is doing and collects ideas from staff and patients. “We’ve got people who are creative problem solvers and expert clinicians who are local clinical champions whose job is to bring about change,” says Dr. Craven. 

Data-driven

This relatively small group of patients has complex needs because of their condition, ranging from circulatory issues to pressure injuries to bladder and bowel control. However, with few formal studies of their health needs over their lifespans, there is limited evidence about what kinds of treatments and interventions help them live their best lives possible. 

“We have very good data about pre-rehab admission and during rehab. But what happens to them after they’re discharged? There’s no uniform data set,” she says. To change that, the consortium collects information about patients and how they fare over the years. 

“We need everybody to collect data and put it all together so we can tell this story,” explains Dr. Craven. Concrete numbers can help her and other professionals in the spinal cord injury rehab community explain their needs and attract better resources and funding. “We have to really push hard to get it on the agenda.”

A higher profile for spinal cord injuries will ensure people like Jimenez continue to get the help they need at Toronto Rehab and across the healthcare system – whether they’re dealing with a test, an injury or any other health condition.

A truly supportive system, like the one Dr. Craven is working hard to establish, can help people living with spinal cord injuries have fulfilling lives. As for Jimenez, he makes sure he accomplishes something for his health and family every day. “Even if it’s just getting up and walking the dog, I like to be productive. I don’t have to do it all, but I have to have some value.” 

By Diane Peters
Diane Peters is a writer in Toronto.