Muscular Dystrophy Canada (MDC), Children’s Hospital at London Health Sciences Centre (LHSC), and Children’s Health Foundation have entered into a partnership to offer a pilot project providing access to an innovative service that helps paediatric patients and their families make informed decisions throughout their care journey.

The Shared Decision Making program works in collaboration with MDC’s Systems Navigation program. The Shared Decision Making program is an additional resource that the Service Specialists can offer to clients, parents and caregivers for assistance with medical decisions.

How do I access this program?

Option 1: You can connect with your Service Specialist and they can assist you with the referral process.

Option 2: You can get a referral for this program directly from your healthcare providers.

What is Shared Decision Making?

Shared Decision Making is the process where health professionals and patients collaborate on medical decision-making with a more structured method that takes into account both the best evidence and patient values. The decision coaching is particularly innovative because it involves unbiased decision support from outside the patient’s circle of care, filling a unique gap that is present in models where only practitioners are directly involved in the decision coaching. For children and youth with neuromuscular disorders and their families, this innovative model becomes all the more valuable as there are many challenging medical and non-medical decisions that must be made over a patient’s health-care journey.

Who can access the Shared Decision Making program?

Currently, the Shared Decision Making program is available for MDC clients in Ontario up to age 18 and their parents or caregivers through this pilot project. Find out more about Shared Decision Making.

All registered MDC clients, family members and caregivers can access the Systems Navigation program. Find your Service Specialist.

What types of decisions can the program help with?

The Decision Coach can help you with making a range of medical decisions such as use of equipment, course of treatment, participation in clinical trials and much more. The Shared Decision Making program includes education, tools, strategies and information.

What’s the difference between Systems Navigation and Shared Decision Making?

These two programs work parallel to each other! Systems Navigation is there to support clients with non-medical needs such as access to equipment, information or resources, emotional support, access to research information or clinical trials, help with self-advocacy and much more. The Shared Decision Making program is there to assist clients specifically with making medical decisions.

If you have any questions or concerns, please contact Danielle Campo McLeod, Director of Mission at Danielle.Campo@muscle.ca or 1-800-567-2873 x2231 or you can contact the Decision Coach, Bonnie Wooten, directly at decisioncoach@lhsc.on.ca or 519 685-8500 ext 58207.

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