The initiative, in collaboration with WellChild, the national charity for seriously ill children, involves parents learning from a specialist nurse how to cope with any medical emergencies.
The “better at home” suite is set up like a child’s bedroom and uses simulation equipment for parents and extended family members to gain the confidence and skills to operate equipment such as ventilators.
Holly Charles’ son Dexter Adu was born prematurely, at 23 weeks’ gestation, with severe chronic lung disease. He requires oxygen during the day and is on a ventilation machine at night.
She and her family discussed Dexter’s treatment plan with the long-term ventilation team and WellChild nurse specialist Charlie Perth.
Previously, training for parents and carers would often take place at a child’s bedside.
Ms Charles said: “The training room is amazing – it’s set up like a child’s bedroom and allowed us to role-play and practise different scenarios so when we went home, we were very well prepared.
“Having the privacy of the suite meant we could relax and really focus on learning the skills we needed.
“During this time Charlie was there to help, taking the pressure off our family so we could focus on Dexter and our training.
“Even now we are home, she continues to support us and ensure Dexter stays well. I can’t put into words how much Charlie’s support has meant to us, she’s our superstar.”
Ms Perth said: “My role gives me the ability to help a child and their family transition from hospital to the community.”
Dr Richard Chavasse, consultant respiratory paediatrician at St George’s said: “The thought of having to look after your child on breathing support at home is daunting for any parent, particularly after a difficult hospital stay.
“The Better at Home training suite is an excellent addition to our children’s services to help us prepare parents for this journey.”
WellChild chief executive Colin Dyer said: “Having a dedicated nurse to support families living with long term ventilation is vital to ensure their child thrives at home.”