Transition – a parent’s perspective

The experiences and feelings about transition to adult services will be different for everyone. So we’re very grateful to Ellie, mum to Zac, 17 for taking the time to share her experience. 

Ellie’s son Zac is 17 and will soon be moving on from Birmingham Children’s Hospital where he has received all his liver care since the age of four. 

“The concept of moving on from children’s services in itself doesn’t worry either of us that much” says Ellie. “Zac also has cystic fibrosis and because we have moved around a lot due to my job, he’s regularly had to go to new clinics and therefore get to know new staff for his CF care. 

What would be helpful is to know as far in advance as possible when the move is going to happen and where we will be attending future appointments. That’s information we don’t yet have. I know the idea is that past a certain age, young people don’t need their parents at appointments but if he’s still being treated in Birmingham, that’s 100 miles away from where we currently live and neither of us would be comfortable about him making the journey on his own at this stage. So from a planning point of view, the more advance notice we have about when he’ll be moving and where, the better. 

 Zac used to be treated at Birmingham by Dr Van Mourik who was great at communication. She always made it clear that when he got older, Zac would move to adult services for his liver care and that one of the differences from the paediatric world was that endoscopies no longer take place under general anaesthetic. This is a fact which has stayed with Zac and, while I wouldn’t say it worries him, he definitely has questions about it.  

I’m sure he’s not alone in this and I think that if there was a way of demonstrating to young people what an ‘awake’ endoscopy looks like in practice – either through a model or maybe animation – it would answer some of these questions. I feel that if questions like this can be addressed before the move takes place, this will be of benefit to young people, their parents and consequently the staff who are treating them.”        

More information on what to expect from the transition process here