In addition to its hospices and the support it provides in Kent, our current charity of choice, Demelza Hospice Care For Children, also offers a community hospice at home service across East Sussex, which is co-ordinated from a building in Bexhill.
There was an open day at Demelza East Sussex in Bexhill on Wednesday 14 September and Lila Dowie, Head of Corporate Partnerships and Trusts, showed us round and introduced us to Melissa, lead nurse, and Liz, who provides family support.
The building provides a base for nurses and support workers who visit children in their homes across East Sussex, while there is space for various meetings, socials and therapy sessions to take place as well. There’s also a garden for sunnier days (although today wasn’t one of those!).
“From Bexhill, we currently provide support to 85 children and we are in regular contact with all those families,” Melissa explained. “We look after children from, sometimes, before they are born up until they are 18. From 18 to 25 there’s a transition phase, so we are able to make sure they are supported as they move into adulthood.”
She continued: “Although we are a hospice, we don’t just provide end of life care; in fact, that’s a small part of what we do. Our children – who have life-limiting or life-threatening conditions - are often with us throughout their childhood. While we support them with medical and practical support, we are also here to help them – and their families – have fun and make memories.”
Liz runs groups for siblings, including an online meet-up for 11-16 year olds, while she recently organised a virtual Lego building session for younger siblings.
“The geographical area in which we operate is large and a priority for us is using our meet-ups to introduce families to each other,” says Liz. “We know that many friendships have been forged between families, who provide really vital support to each other.”
The team is currently organising a Christmas party for families, while it is arranging events for half-term in October and Halloween.
On Friday mornings, there’s a Little Dots play group held in Bexhill for 0-5 year-olds and their siblings, while the building has a sensory room and there are also rooms where families can have sessions including counselling, music therapy and dance movement therapy, although these can also be held within a family’s own home.
“In the summer we had an art session in the garden where children could make as much mess as they liked,” explains Liz. “One child was literally rolling around in the paint and having a wonderful time.”
On the wall of Demelza East Sussex there are stunning art pieces, including painting made by filling syringes with paint – making what can be a ‘scary’ piece of medical equipment into something fun.
Adds Melissa: “Between us, we have a fantastic network and we’ll do our best to make life that bit easier for families. One baby under our care had never seen a farm animal in real life – and was unlikely to do so. We found somebody locally with a lamb and they bought it in for them to see and touch.”
The help can also be of a more practical nature.
“One family was unexpectedly kept in hospital and the mum didn’t have her pyjamas with her,” says Liz. “We made a phone call and quickly sourced some. It’s sometimes the small things which make a difference.”