In The Hospital Lane: Stepping into Adult Healthcare

In May, we launched our latest book addressing the important transition from paediatric to adult healthcare. Below is a key section from the book that explains the changes from the young person's perspective. Visit our website to view talks on this topic given at our May conference. For a free copy of the book, contact office@idfnz.org.nz.

For the Parent - ‘Handing over the care – sounds simple, doesn’t it, to the ordinary parent. But as parents of children (sorry – young adults!) who have had complex and often harrowing medical journeys, it’s just not that simple. As a parent to a medically complex child, you have been their sole person in charge of everything, their detailed medical history, nursing care, mental health and wellbeing challenges, schooling, medications, immunisations, medical advocate, juggling appointments - often different specialties, all while raising a young teenager as well and all that entails. You have managed every part of their medical lives to keep them well and thriving; you know their history inside out and sometimes have had to fight for their best possible care. You are their number one person. So, to hand this off to that young person can feel daunting. It’s not that they are not knowledgeable; they have been trained all their young lives to understand their conditions and how to deal with them. It’s the burden you have sheltered them from that you have carried for them so they can live as normal a life as possible. And now it’s their right and responsibility to take control of their own medical journey, one they did not ask for or necessarily want. As a parent or caregiver, it can be hard to step back and let go of having input into your young person’s journey. But as a parent who has been through this, I can assure you that the youth clinic team is fantastic at supporting both you and your young person through this transition, gradually letting them take over the appointments in a gentle, caring way. This guide is designed to help you all understand the process and how real families are dealing with it.’ Samantha Sutherland Former IDFNZ Board member, and Mum of Lara, and IDFNZ member.