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Heidi, from Bexhill, is a Community Care Support Worker for Chestnut Tree House children’s hospice. She is keen to share her experiences of working in children’s palliative care in the hope it encourages others to think about joining the sector.
Whilst every day is different for Heidi, a lot of her time is spent offering respite care to families in the community. All of the children and families cared for by Chestnut Tree House can spend time at the fully-equipped hospice building near Arundel – for a day or for several nights, as a family or as an individual child – but they also receive regular visits from Chestnut Tree House’s Community Team.
One of the children Heidi cares for is four year old Fia who lives in Westfield near Hastings. Like all of the children being cared for by Chestnut Tree House, Fia has a detailed care plan giving information about everything from likes and dislikes to her daily medical routine, so Heidi brings herself up to speed with this before heading out with one of the Chestnut Tree House nurses to visit Fia.
Fia lives with her Mum, Dad, two brothers and sister and is described by Heidi as a cheeky, funny girl with a love of chocolate buttons. “She’s a really fun little girl to be around,” says Heidi. “In a lot of ways she is a typical four year old but she has Alexander Disease, which is a degenerative neurological disease. This means she is likely to lose the ability to walk and talk and might start having seizures, but right now she is able to walk and talk and tell me exactly what she wants to do.”
When Heidi arrives at Fia’s house she and the Chestnut Tree House nurse spend some time chatting to Lian and Matt, Fia’s parents. Fia is due surgery soon to fit a peg, which will allow her to be fed directly into her stomach and bowel. They obviously have lots of questions about what that will mean for Fia, both during and after surgery, and Heidi, along with Fia’s named nurse, is able to answer their questions and put their minds at ease.
After that they head out for a few hours of fun. “There are lots of things we might do on a visit with Fia,” explains Heidi. “We might go to the shops to buy chocolate buttons or to have a milkshake. We might go across to Chestnut Tree House for the day and use the swimming pool. It’s an opportunity for her to do whatever she wants for a few hours, and for her family to spend some quality time knowing she is being well looked after.” On this occasion it is a trip to Battle followed by some soft play. “Whilst Fia is having fun, myself and my colleague are watching to see if she has any seizures and making sure she is hydrated and has the correct medication at the correct time.”
It is this complexity that makes the respite care that Chestnut Tree House offers so important. In most cases children with life-shortening conditions have complex medical needs meaning that babysitters are hard to come by. Parents and carers are often the only ones able to look after their children, so a break from that round-the-clock responsibility is incredibly welcome.
For many, the idea of working for a hospice is a scary prospect. Heidi often has people ask her how she deals with her job emotionally and many people think it’s not something they could handle. “Of course it’s tough at times,” she says. “You form really close bonds with the children and families you work with so it’s hard to see them go through tough times. But it’s also a real privilege to help them through those times. To know I’ve made a difference.
“The children we care for are not expected to live until adulthood and, of course, that’s hard. We can help families make the most of the time they have together, and be there when the time comes to ease the pain. It really is an honour to be a part of that.”
Chestnut Tree House currently has a team of 46 nurses and 43 care support workers, who work at the hospice near Arundel and in family homes across East and West Sussex and South East Hampshire. They are currently looking for Registered Nurses to join their Community Team, find out more on our Jobs page