Hearing the Parent’s Voice: Supporting Families After a Life-Limiting Diagnosis.

It was a privilege for SOFT UK to be involved in delivering the session “Hearing the Parent’s Voice: Supporting Families After a Life-Limiting Diagnosis.,” with the HCRG Care Group. The meeting created an important space for open and honest discussion around the experiences of families receiving difficult diagnoses, and the impact that compassionate communication and support can have in those early moments.

Representing SOFT UK were Shaun Dowdall and Sonia Sankoli, who provided an overview of the charity’s work supporting families affected by Trisomy 13, Trisomy 18 and related conditions. The session was strengthened by the expertise and insight of Dr Una Macfadyen, who shared her professional perspective on supporting families with empathy and understanding.

A particularly powerful part of the discussion came from Claire Sayers, mum to Raffy, who lives with Trisomy 13. Claire spoke both as a mother and as a medical professional, offering a unique and deeply moving insight into the realities families face, and the importance of listening to and valuing the parent voice throughout their journey, but more importantly, seeing the child beyond a diagnosis.

SOFT UK is grateful to have been part of such a meaningful conversation and hopes sessions like this continue to encourage understanding, compassion and family-centred care.