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cliniccropLast year, a new educational venture was held with the support of Muscular Dystrophy Canada. In partnership with Holland Bloorview and Sick Kids this creation was a family day for those supporting people living with Spinal Muscular Atrophy (SMA); these included children, young adults and adults, as well as their families and caregivers. Dr. Reshma Amin explains how the Spinal Muscular Atrophy (SMA) Family Day came about:

“I work in the Complex Respiratory Care clinic at The Hospital for Sick Children along with Dr Theo Moraes, Cathy Daniels NP, Faiza Syed RRT and Ellie Lathrop SW. Our team follows children dependent on respiratory technology (eg BiPAP and invasive ventilation,) many of whom have neuromuscular disorders such as Spinal Muscular Atrophy. Many of these children are often jointly followed at Holland Bloorview Rehabilitation Hospital for their neuromuscular care by Dr. Laura McAdam, the co-chair of this event, and her team. In clinic one day, while we were discussing transition to an adult healthcare center, an adolescent mentioned that he wanted to go to university and that he would love to be able to talk to another young adult with SMA that was successfully attending university. This got us thinking that we should organize a family educational event to facilitate kids with SMA being able to talk to other kids with SMA about ‘real life’ issues.”

Over 100 individuals (a full house) attended the event – most from the Greater Toronto Area, but participants from Thunder Bay, Ontario and New Brunswick were also present. The goal for the day? “To increase awareness about Spinal Muscular Atrophy in the community and to further educate caregivers, and children affected by SMA,” says Dr. Amin. “More specifically we wanted to increase the knowledge of families and children surrounding the medical, and psychosocial impact of SMA. We wanted to provide a venue in which we could foster supportive relationships between affected families. Lastly, we wanted the children and their families to learn of and appreciate the current scientific research activities that are ongoing for SMA.”

The day consisted of listening to many speakers, and participating in discussions and networking opportunities:

“Our key speakers are internationally renowned for their work with Spinal Muscular Atrophy. Dr. John Bach, a Professor of Physical Medicine and Rehabilitation from University Hospital, Newark, New Jersey, who has unparalleled  clinical experience with those affected by this disorder, provided us with a provocative overview of the respiratory management of SMA. Brian Weaver, MS, RRT-NPS, RPFT, a respiratory therapist and Department Head at Kimble Medical Center, Newark, New Jersey, provided a practical review of the respiratory complications and the role of respiratory technology for children with SMA. Dr. Alex Mackenzie, a clinician-scientist from the Children’s Hospital of Eastern Ontario provided a high level review of SMA research and what clinical trials for children with SMA are current and planned.  There were many other speakers including Tracy Lacey, chair of Fight SMA Canada, her husband Shawn and their daughter Tori, who has been diagnosed with SMA, provided a practical overview of ‘living with a child with SMA’ from needed home modifications, to school considerations. Dr. Adam Rapoport, the Medical Director of the Pediatric Advanced Care Team at SickKids informed families of the support services their team is able to provide to their children and families. Karen Dunbar, Services Specialist for Ontario and Nunavut from Muscular Dystrophy Canada, provided a pragmatic, and informative overview of the services and supports provided by the organization to children and their families with SMA. Dr. Laura McAdam, reviewed the Canadian Neuromuscular Disease Registry, established with the aim of helping clinicians and scientists improve clinical care of children with neuromuscular disease. There were also sessions focused on caring for a child with a chronic disease, increasing independence of adolescents with chronic disease as well as a break out session just for teenagers with SMA.”

Angela McGonigal, whose son Owen is affected by SMA, thought that the day had many great aspects including the health information shared, and the opportunity to establish networks and bonds with others in the same situation.

“Brian Weaver is a Respiratory Therapist who worked closely with Dr. Bach.  He is a strong proponent of cough assist machines for SMA patients.  He advised that when SMA kids are sick, they can utilize the cough assist machine every 3 hours during the day,” remembers Angela. “He recommends avoiding oxygen therapy as it masks ventilation issues such as secretions.  He encourages chest therapy and recommends having the torso higher than the head to facilitate drainage.”

Muscular dystrophy Canada’s very own Services Specialist for Ontario and Nunavut, Karen Dunbar’s information was also very helpful. “She provided an overview of the home renovation funding and the equipment program and the event was well attended by families, doctors, therapists, nurses, social workers and others involved in SMA patient care.  It was a great opportunity to learn, reflect and connect,” says Angela.

Dr. Amin also heard high praises from attendees, “One participant told me they felt ‘informed, inspired and connected.’ At the end of the day, we were also asked, ‘When are you going to have this next year?’”

Everyone who attended, from clients, parents, caregivers and medical professionals, all learned new things and made new connections. Dr. Amin had one particular memory stand out: “At the end of the day, we had a panel discussion led by adolescents and young adults with Spinal Muscular Atrophy. The audience was able to ask these individuals questions, and the responses were insightful and inspiring.  One young adult with SMA was asked, ‘What is the one thing you would want to change in life if you were able?’ Her response was to be able to change the way people looked at her in a wheelchair. She hoped for a world with an increasing acceptance of children who were different. Her words resonated with everybody who was in the room. As healthcare providers, this is one goal we need to help work towards achieving for these children.”

“We hope that the attendees came away with an increase in knowledge regarding the respiratory management and complications of a child with SMA,” says Dr. Amin. “We also wanted to increase the awareness of the effect of having a child with SMA has on the family, specifically the social and psychosocial consequences of the condition at life’s many transition points. We also hope that we were able to break down barriers and foster open discussions between health care professionals, caregivers, and children both at the event and in the future. Of paramount importance is our hope that we were able to promote a support network for families with children with SMA. We also wanted to fully inform families about the registry as well as other research in SMA in order that they may participate in research if they wish to do so.”

The full house and outstanding feedback from attendees highlights the importance of partnerships between hospitals, care facilities, research centres and not-for-profit organizations, and why sharing information and resources – not only from a research standpoint, but also in terms of services – is so vital to the care of those with neuromuscular disorders. “The Hospital for Sick Children, Holland Bloorview Rehabilitation Hospital, and Muscular Dystrophy Canada all strive to provide better patient centered care to the children and their families,” Dr. Amin explains. “Strong partnerships are essential across hospitals and NFPs to facilitate transitions from hospital to home as well as to develop and support these families in their communities,” says Dr. Amin.  “For example, the funding support of Muscular Dystrophy Canada towards respiratory technology facilitates the purchase of mechanical insufflator-exsufflators (cough assists) for our patients.  This improves their overall pulmonary health and helps to keep these children in school and out of hospital.”

Of course, that is everyone’s ultimate goal.

________________________

The Spinal Muscular Atrophy Family Education Day was hosted by SickKids Hospital and Holland Bloorview Rehabilitation Hospital. This event was made possible by the generous support of Muscular Dystrophy Canada, the SickKids Foundation, Fight SMA Canada and Lifetronics.

For more information on SMA and other neuromuscular disorders, please . To learn more about programs offered by Muscular Dystrophy Canada, please in your region.

To learn more about the Canadian Neuromuscular Disease Registry, click here.

 

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