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Challenges of Leo’s Angelman Syndrome and innate curiosity

Challenges of Leo’s Angelman Syndrome and innate curiosity

With World Patient Safety Day having taken place last Saturday, 17 September, the HSE National Quality Patient and Safety Directorate has shared a video compiled to illustrate the diverse and challenging nature of patient safety.  In the video, Joan Johnston, a HSE Patient Partner, outlines how she is mum to Leo, aged five, who lives with Angelman Syndrome, a rare neuro genetic condition which means that his care can be “medically complex.”  The theme for this year’s World Patient Safety Day is Medication Without Harm.  Joan explains that her family “have experienced medication safety incidents with Leo’s medications in the past.”

However, in illustrating the diverse nature of patient safety, Joan notes that she wants to “take this opportunity to highlight that patient safety means different things to different people across different healthcare settings.” She continues: “Right now our focus is Leo’s safety in the physical environment.  We are constantly looking around and asking ourselves, what would Leo do? Leo is a curious little boy, he enjoys exploring the world around him with his hands and his mouth.  Hospital visits are challenging.  Leo requires constant supervision as he’s a tenacious problem solver and opportunistic risk taker with zero safety awareness.

“Everything that Leo finds interesting must be explored in his mouth and health care items are particularly interesting.  I remember one admission, leaving Leo in his special seat, while I went to the bathroom down the hall.  When I came back I found him happily chewing on the IV line that had been in his neck when I left.   I have fished other healthcare items out of his mouth too – his hospital ID bracelet after he chewed it off his wrist.  We have to be hyper vigilant, particularly when Leo is in new environments.

“So on this World Patient Safety Day I ask you to consider what does patient safety mean for you, the people you work with and the people you care for? If it is the care environment like it is for us with Leo, are there hazards that can be removed or made safe? Is there a specialised bed that can be requested or a floor mat that can make his floor exploration just a little more hygienic? Is the dressing or ID bracelet that you are placing secure from curious and industrious little fingers and mouths?  Do you regularly ask Mom or Dad if they need a break to grab something to eat, use the bathroom, or just get some fresh air so that children like Leo are never left with unsupervised opportunities for mischief.   Look around you today and think, is there anything I can do to make Leo’s visit safer?  Ask yourself as we do, what could Leo do?”