“Good morning, Wilf! Hello, Isla! Good morning, Sully! Come on in...”
It’s 9.50am on a Thursday at the Devizes hospice and the driveway is full. There’s a buzz of lively chatter and a warm welcome, as parents bring in their young children for six hours of play, learning and care.
The morning ‘drop-off’ is a scene many parents and grandparents will be familiar with. But this isn’t your average pre-school. Instead of packed lunches to hand over, there are oxygen canisters, feeding kits and suction machines. Instead of spare wellies, there are wheelchairs and heart monitors.
Before families arrive, the team of Nurses and Carers run through every child’s specific needs for the day.
"Every child we care for has a complex condition, and we need to be prepared in case of a medical episode,” says Nurse Jemma.
Before leaving, each parent has time with their Julia's House Nurse, to let them know how their child has been recently. There is a form, so everything is recorded and nothing is missed, but it’s a friendly and familiar conversation, and a chance for parents to let off some steam, ask for advice, or share some news.
Abbie, mum of four-year-old Wilf, says, “I love the mid-week sessions at Julia’s House! It’s a day in the week when I can get some jobs done or spend time with Wilf’s healthy twin brother, Rupert. And Wilf loves all the 1:1 attention and care that he gets from his Nurses and Carers.”
While most children attending these regular sessions are under five years old, they’re not exclusively for preschool aged children.
“Older children, like 16-year-old Hope, also really love this time for storytelling, sensory play, bubble baths and singing,” says Jemma. “It’s lovely to see how the children interact and make friends too.”
Crucially, the regular midweek sessions give parents six hours of respite care that they can look forward to.
Abbie says, “It’s good for your mental health to get those breaks. As much as I love being Wilf’s mum, it’s so nice to be able to take a break from being a full-time carer, just re-set a bit, and feel like yourself again.”
Lead Nurse Lisa would like more families to know they can come and meet the team at Julia’s House before their baby is even born, if they know their child has a complex medical condition. She thinks this would help to take away the myth of what a children’s hospice may look like and can offer.
Lisa regularly links up with local neonatal units too, to raise the profile of Julia's House and the services that a children’s hospice can provide.
“More children are surviving and living for longer with complex medical needs because technology and medications have progressed so much,” says Lisa. “A baby born at 24 weeks today has much higher survival chances than just a few years ago.
“It can be a very isolating and worrying experience when your baby has a complex medical condition.
“They might be going to baby groups, and there’s nobody for them to connect with because no one else is walking that same path.
“It’s also a time when they’ll be grieving their ‘well baby’ that was never born.”
Lisa says, “If they were referred to Julia’s House, they could have a vital support network around them. They would be introduced to other parents who know what they’re going through, they would have access to a Family Support Worker, sibling support, complementary therapy, counselling and more."
She adds, "We want parents to know that choice is there for them. We want families to know we’re here, and we can help."