Team Leader for the Children and Young People's Service
She says, "EPIC was a really valued and trusted service for our families and they appreciated the regular respite. But there were restrictions - we couldn't offer symptom control or care for a child at the end of their life at home.
"Now Little Havens is heading up this newly formed Children and Young People's Service, we can start to focus on true 'hospice at home' care to offer choice to these families about where they are cared for and, should that time come, where they want their child or young person to die."
The benefits of being part of a larger team - which includes staff from Little Havens and The J's - are starting to be felt. Emma continues, "As an independent charity, we have the freedom to shape the services to what our families need at that particular point. For those who were just receiving care from EPIC, this whole other world has opened up - access to the gardens, virtual music therapy and baking, a dedicated Wellbeing Team and support with transition.
"What has been really valuable is the input, advice and knowledge from others in the wider team. We hold multi-disciplinary team meetings (MDT) and discuss a child's holistic needs with the nurses, our doctor, representatives from our Wellbeing Team and sometimes external professionals like occupational therapists. The expertise from these people is so important.
Emma continues, "For the families who prefer respite in the home, it's comforting for them to have a regular and consistent level of care, with the carer getting to know the children and their specific needs. The families can still be themselves in their own home and we will just fit into that dynamic.
"Often children with complex needs will have a lot of equipment, medication and personal care items that are needed for short breaks, so it's not always convenient for them to leave the house for a short while.
"Respite care is what the families want it to be, and they can spend these hours how they choose. They may go shopping or spend time with their other children. They may even want to stay with their child, but hand over the personal care to us. Sometimes it's just support, a mental and physical break for them. You may be the only person they've seen all week because they're so isolated."
"I'm really proud of the team, they're amazing. They embraced the move to Havens Hospices really well. Every member is very resilient and they could see that this change would be better for our families, so just got on with it."
"Our ultimate goal is to offer proper choice to parents and young people about where they receive their care. We want to implement robust end-of-life care planning and not be afraid to have these conversations. We also need to form closer relationships with hospitals and specialist centres like GOSH, Evelina and Addenbrooks so they have a better understanding of how we can support local children under their care."