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DTSTART:20240331T020000Z
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SUMMARY:Making Families Count: Hearing the parent voice – Caring f
	or a child with complex needs
DTSTAMP:20240311T175445Z
SEQUENCE:0
UID:1472-1-ee2a5ec9cbd1b5a75b4ec5d63ec903ec@www.pslhub.org
ORGANIZER;CN="Patient Safety Learning":noreply@pslhub.org
DESCRIPTION:\n	For the first time\, Making Families Count are collaborat
	ing with SOFT UK\, a charity that supports families caring for children wi
	th a rare and life-limiting genetic condition. Speakers will be drawn from
	 the families and healthcare professionals who are part of the SOFT UK com
	munity\, sharing their stories and lived experiences and giving suggestion
	s that may help you support the families you work with.\n\n\n\n	The Depart
	ment of Health UK Strategy for Rare Diseases (DHSSPS 2020) estimates that 
	rare diseases\, including genetic conditions\, affect the lives of over 3 
	million people in the UK. Of these\, a significant proportion are children
	 with genetic life-limiting and life-threatening conditions. The parents o
	f many of these children often talk of the challenges of parenting a disab
	led child and their sometimes stressful interaction with healthcare profes
	sionals.\n\n\n\n	This webinar will give you greater insight into the lived
	 experience of families caring for a child with complex needs. We will exp
	lore their day-to-day challenges in dealing with the anxiety of hospital a
	dmissions\, difficulties of communicating with and being heard by healthca
	re professionals\, the challenge of balancing the needs of the whole famil
	y\, and the stressful burden upon parents over time.\n\n\n\n	This webinar 
	is for…\n\n\n\n	\n		Paediatric nurses\n	\n	\n		Paediatric / Community nu
	rsing teams\n	\n	\n		Complex Care Team (Paediatrics)\n	\n	\n		Respite Care
	 (Paediatrics)\n	\n	\n		Play Specialists\n	\n	\n		Hospital at Home teams (
	Paediatrics)\n	\n	\n		Paediatric / Children’s Occupational Therapists\n	
	\n	\n		Paediatric / Children’s Physiotherapists\n	\n	\n		SALT\n	\n	\n		C
	hild Development Centre staff\n	\n	\n		Paediatric Outreach Teams\n	\n\n\n\
	n	Presenters: \n\n\n\n	Dr Alison Pearson\, a post-doctoral research fello
	w in education\, well-being\, and resilience and mum to 13-year-old Isabel
	\, who has full Edwards’ syndrome. She draws upon her research and her f
	amily’s lived experience to talk about the challenges of hospital acute 
	admissions for Isabel and the impact on her whole family.\n\n\n\n	Una McFa
	ddyn\, a recently retired Consultant Paediatrician with a special interest
	 in respiratory and neonatal paediatrics. Una has a long-standing interest
	 in children’s rights and has worked with various projects involving chi
	ldren and parents as partners in care. She will provide the perspective of
	 a healthcare professional on supporting families and their children.\n\n\
	n\n	You will also hear other voices from the SOFT UK community of families
	 via several films and audio clips\, bringing to life the experience of a 
	wide range of parents who care for children with complex care needs.\n\n\n
	\n	Learning outcomes:\n\n\n\n	At the end of this webinar\, you will have a
	n appreciation of the challenges facing parents who care for a child with 
	complex needs – specifically the anxiety of acute admissions to hospital
	\, communication issues with healthcare staff\, and the wider impact upon 
	families. You will be able to use that deeper understanding to shape the c
	are and support you can offer these families in your own practice.\n\n\n\n
		Register\n\n
DTSTART:20240418T113000Z
DTEND:20240418T130000Z
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