Webinar: Hearing the Parent Voice – Caring for a Child with Complex Needs (Thursday 18th April 2024 from 12.30 - 2.30 pm)

Making Families Count invites you and your colleagues to our webinar “Listening to the parent voice - caring for a child with complex needs” on Thursday 18th April from 12.30 - 2.30 pm.

Making Families Count are collaborating with SOFT UK, a charity that supports families caring for children with rare and life limiting genetic conditions. Speakers will be drawn from the families and health care professionals who are part of the SOFT UK community, sharing their stories and lived experiences and giving suggestions which may help you support the families you work with.

The Department of Health UK Strategy for Rare Diseases (DHSSPS 2020) estimates that rare diseases, affect the lives of over 3 million people in the UK. Of these a significant proportion are children. The parents of many of these children talk of the challenges of parenting a disabled child and the sometimes-stressful interactions with healthcare professionals.

This webinar will give you:

· greater insight to the lived experience of families caring for a child with complex needs.

· understanding of the day-to-day challenges in dealing with hospital admissions.

· difficulties of communication with, and being heard by, healthcare professionals.

· challenges of balancing the needs of the whole family and the stressful burden upon parents over time.

Your deeper understanding could shape the care and support you can offer to families within your own practice.

The speakers include:

Dr Alison Pearson , post-doctoral research fellow of education, wellbeing and resilience and mum to 13-year-old Isabel, who has full Edwards’ syndrome. She draw upon her research and her family’s lived experience to talk about the challenges of hospital admissions for Isabel and the impact on her whole family.

Una McFaddyn , a recently retired Consultant Paediatrician with expertise in respiratory and neonatal paediatrics. Una has a long-standing interest in children’s rights and has worked with various projects involving children and parents as partners in care. She will provide the perspective of a healthcare professional on supporting families and their children.

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.

To book your place please visit:

Best wishes

Rosi Reed
Development and Training Coordinator
Making Families Count