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December 2022
What is National SCI Care Strategy?
A national care strategy will ensure a system of care built on evidence and practices that support people with spinal cord injury (SCI) to live their best life in the community. 

To support this initiative, Praxis is sharing best practices drawn from across Canada that showcase excellence in SCI research, care and innovation in action. 
We hope you find these stories enlightening.
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In this month's theme learn about

Access For All:
Overcoming Challenges and Increasing Inclusion

Each month the National SCI Care Strategy newsletter shares examples of excellence and best practices in action, introducing practitioners and experts at their work.

This month we’re continuing our theme of accessibility, looking at ways to increase service provision in remote or rural areas that lie outside major metropolitan regions.     

Moving Back to the Community

A major goal post-SCI is to get back home and into the community. Moving back to the community means a return to home and family, and a chance to reintegrate.

The immediate hours and days following an SCI are key for survival, recovery and rehabilitation. Clinical centres of excellence, however, are usually found only in urban areas. This means that critical care in the immediate aftermath often takes place far from home but this gets extended with rehabilitation. Moving back to the community means a whole new clinical services environment. Support needs are much broader than simple health care. Going home also means getting used to different levels of service provision and expertise.

Louise Clément, Executive Lead for Clinical Partnerships with the Health Standards Organization in Canada notes that this often means different routines as well as expertise that may be sparse and fragmented. The supports may simply not be there to ensure success. This factor came up in the needs assessments when working on building standards for rehab. Her suggestion is that only by involving individuals with lived experience of SCI, could standards for rehab be established for a continuum of care.



“At the end of the day, as a person with lived experience, you have to pick up your autonomy and integrate back into the community.” 

Integrated People-Centred SCI Rehab

Being Back at Home

Normalcy and regaining it as soon as possible is key to successful reintegration. Families matter, both for providing home care and for getting back to family roles prior to SCI. 

According to Taryn Buck, Unit Manager at Glenrose Rehabilitation Hospital - Alberta Health Services, maintaining a sense of normalcy helps greatly with the post injury transition home. This often relies heavily on the level of home care available. Since this often isn’t round the clock or constant, families help to fill in the support.
This is where it’s important to consider how the person with a SCI can retain normalcy – to still feel that they are the husband, father or son, for example, even though they’re relying heavily on family. Being able to maintain the husband and father role while still asking their family for help when home care services aren’t as easily available can be an issue.



“...if patients are going home without home care services, it's just making sure that they are able to sort of maintain some level of normalcy."  

SCI Physiotherapy MOOC

What Do People Need?

How do we find out what people need when talking about services? Who do we ask and how do we ask them?

Louise Clément strongly affirms that people with lived experience of SCI need to be in the conversation right from the start. She is also firm about making sure that the language practitioners use is inclusive, in that there’s not too much jargon and isn’t intimidating. Avoiding the power dynamics by talking in plain language helps establish equity through health literacy principles.

Giving people with lived experience of SCI, including caregivers, a safe space for conversation opens amazing opportunities for learning.


“We cannot speak for people with lived experience; they have to be in the conversations with us. And so we have to give them that safe space.

Involving Knowledge Users as Equal Participants

Listening and Innovation

It’s important to listen to community and to spread the engagement as widely as possible, to capture a diversity of voices and experiences.

Medical tech can be a great help in rehab and when back in the home. There are devices that help with mobility, health care and preventive support for the SCI community. However, in order to be functional and meet the needs of people with lived experience of SCI, it’s important not only to listen to the community but to spread the engagement as widely as possible.

Arushi Raina, Director of Commercialization at Praxis notes that entrepreneurs gain massively from input from public focus groups brought together to mentor companies in the SCI Accelerate and Incubate programs. With user input at every stage of the process, innovation benefits and reach is extended.

Thinking about manufacturing processes in low-income countries and understanding the constraints from financial limitation helps bring assistive tech within reach of more people. It also helps expose entrepreneurs to different user groups, some of whom may point out that experience is not uniform across the board.


“…diversity is really important for an entrepreneur to understand, that they're dealing with constraints” 

Canada-India SCI Innovation

Resources   

Coming Up Next!

Next year, we are continuing our exploration of best practices in action as we move towards a National SCI Care Strategy. We're interested in what you would like to share too; how are you putting best practices into action in your clinical practice and community? Please let us know. 

You can leave your feedback or share your story.
 

ABOUT: Praxis started an engagement process in 2019 to create a national care strategy aimed at building on the strengths and collective wisdom of the spinal cord injury (SCI) community across Canada. Based on community consultation, this process led to Being Bold: Toward a National Spinal Cord Injury Care, Health & Wellness Strategy Discussion Document & Consultation Report, a discussion document, and then to the follow up community report, SCI Care for Canada: A Framework for Strategy and Action, which lays out a framework for an actionable National SCI Care Strategy.

The ongoing vision will ensure a national system of care built on evidence and practices that support people with SCI to live their best life in the community. As the ‘backbone’ organization in this initiative, Praxis is sharing best practices drawn from across Canada; instead of searching for solutions in isolation, the national strategy will give people access to peer experiences and stories of excellence that show best practices in action and their impact daily life.

Praxis Spinal Cord Institute is a Canadian-based not-for-profit organization that leads global collaboration in spinal cord injury research, innovation and care. We accelerate the translation of discoveries and best practices into improved treatments for people with spinal cord injuries. Praxis facilitates an international network of people with SCI and other world-class experts to work together to identify, prioritize and solve the most urgent challenges.

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