{"id":4971,"date":"2025-09-29T00:25:38","date_gmt":"2025-09-29T04:25:38","guid":{"rendered":"https:\/\/musco.ca\/?p=4971"},"modified":"2025-09-29T10:46:01","modified_gmt":"2025-09-29T14:46:01","slug":"newsletter-september-2025","status":"publish","type":"post","link":"https:\/\/musco.ca\/en\/newsletter-september-2025\/","title":{"rendered":"Newsletter September 2025"},"content":{"rendered":"
\n Content with Musco background<\/span>\n \n \n \n\n

The MUSCO Advisory Pole<\/h2>\n\n\n\n

At the heart of governance, where families\u2019 voices truly resonate.<\/p>\n\n\n

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In Quebec, at the time of the Initiative\u2019s launch, nearly 60,000 children and adolescents were living with a physical disability, many of them facing serious conditions. These challenges\u2014whether present from birth or resulting from an accident\u2014affect not only our children\u2019s lives but also those of our families. They shape our daily routines, our independence, and the roles we are able to play in society. MUSCO was born from this reality.<\/p>\n<\/div><\/div>\n\n\n\n

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Each year, the Initiative’s partner institutions care for these children and adolescents. Their expertise is widely recognized, and the quality of care is high. Yet for us, as families, access remained complicated. Too often we faced long delays, fragmented services, and barriers that were difficult to overcome. When these obstacles recurred, they became all the harder to endure, especially given the chronic nature of our children\u2019s conditions.<\/p>\n<\/div><\/div>\n\n\n\n

How then can we hope to make ourselves heard and bring about change?<\/p>\n\n\n\n

Working WITH Families<\/strong><\/p>\n\n\n\n

Today, much is said about the importance of consulting users, patients, and parents in order to better respond to their real needs. As parents of children living with neuromusculoskeletal disorders\u2014or as patients ourselves\u2014we know how essential this approach is. Projects that meaningfully involve patient partners are multiplying, and this is encouraging.<\/p>\n\n\n\n

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Too often in the past, families were consulted only after solutions had already been defined, when our needs had not been clearly identified. Yet it is precisely by taking the time to fully understand the realities of the children and families concerned that truly useful and effective projects can emerge. Asking families and patients the right questions makes it possible to achieve objectives and to design sustainable solutions that genuinely improve lives.<\/p>\n<\/div><\/div>\n\n\n\n

By maintaining this approach, we can build a future where care is provided to the right patient, at the right time.<\/p>\n\n\n\n

Our Voice Heard<\/strong><\/p>\n\n\n\n

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What made the difference with MUSCO was that our voices as parents truly had a place. The Advisory Pole was created for precisely this purpose: to involve us directly in discussions and decisions. For parents and patients alike, having a role in the governance of such a program speaks volumes about the quality of listening involved. Our voices were placed at the heart of the conversation so that each project could be developed in line with our real needs and those of our children.<\/p>\n<\/div><\/div>\n\n\n\n

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Recruitment to the Advisory Pole was designed to reflect our different realities\u2014diverse diagnoses, life paths, and socio-professional backgrounds\u2014while ensuring the participation of mothers, fathers, and patients. Our role was to provide a broad perspective to guide the Initiative\u2019s direction, while also taking enough distance from our own personal situations to represent other families in need of similar care and services. We contributed to discussions ranging from overall strategy to clinical projects and process improvements.<\/p>\n<\/div><\/div>\n\n\n\n

When Should Families Be Involved, and How?<\/strong><\/p>\n\n\n\n

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In our daily lives, supporting a child through their care journey is already an immense challenge. How, then, can families find the time and resources to participate in projects while shouldering these responsibilities? MUSCO created the right conditions for this involvement by showing empathy, fostering inclusive and caring spaces, and ensuring a sufficient number of members to make each discussion constructive.<\/p>\n<\/div><\/div>\n\n\n\n

Over the years, our participation grew, projects multiplied, and we were motivated to broaden our engagement\u2014even stepping outside our comfort zones:<\/p>\n\n\n\n