Chestnut Tree House Cares About Making Every Now Count
It’s Children’s Hospice Week from 17th-23rd June and we’re highlighting the vital care services provided by Chestnut Tree House – our local children’s hospice, which cares for around 300 children and young people with life-shortening conditions across East Sussex, West Sussex and South East Hampshire, all of whom are unlikely to reach adulthood.
There is a Community Nursing Team who visit families at home, taking children out or simply giving tired families and carers the chance to take a well-earned break. Children and families can also visit the hospice near Arundel, where kids can be astronauts for the day in the multi-sensory room, discover creepy crawlies on a woodland walk, or form their very own pop group in the music room. It is a place where parents can just be parents not carers, and where siblings have people to talk to who understand.
Then, when the time comes, Chestnut Tree House help families say goodbye, in whatever way feels right for them, either at home or in the hospice itself. They offer ongoing bereavement support for the whole family.
It costs Chestnut Tree House over £3.9 million every year to provide its specialist care services and less than 6% of that comes from central Government. All care is offered free of charge, so they rely heavily on the generosity of the local community. For today. For tomorrow. For the Now.
To find out how you can make a difference and help Chestnut Tree House support local life-limited children, visit www.chestnut-tree-house.org.uk, or get in touch on 01323 725095 / 01903 871820.
Oliver lives in Eastbourne with his Mum Caroline, Dad John and siblings Joshua, Connor and Shannon. In a lot of ways he is like every other 9 year old – attending the local primary school, winding his siblings up and playing on his PlayStation at every opportunity.
When he was about 18 months old, however, he was diagnosed with a condition that means his muscles will deteriorate over time and leave him reliant on his parents for all of his personal care. He has already lost the ability to walk, and even to move his legs very much, he may lose the ability to swallow, and will probably need oxygen at night in the future. “It was devastating,” says Caroline. “We’ve had to come to terms with the fact that he is never going to get better, he is just going to deteriorate.”
Since then the family has had very little support. “Nobody can look after Oliver,” says Caroline. “We can’t just ask a friend to babysit and go out for dinner, we can’t leave him at a birthday party for a couple of hours or let him stay at his grandparents’ overnight because they can’t get him out of his chair.”
The family met Susan, a Care Support Worker from Chestnut Tree House nurse, in 2017 when Oliver was 7 years old. “We were really worried about Susan looking after Oliver to start with,” says Caroline. “He has always been quite clingy so we didn’t know if he would even let us leave him with her. But he was fine, and now absolutely loves his visits with her.”
“They always go out and have fun – at the bowling alley, or driving range, or just a trip to feed the ducks at the local park. And it’s made a real difference to his confidence – when he was a baby I couldn’t leave without him getting hysterical, now he’s almost too independent, which is really great.”
As well as support at home the family have visited Chestnut Tree House’s purpose built hospice near Arundel. “There is such a loving atmosphere at the House,” says Caroline. “The first time we stayed overnight I thought we would be called on to help with Oliver’s care, but the team at the house just got on with it. It was weird not to be needed, but lovely to have a full night’s sleep in the family rooms upstairs.”
“Oliver has always missed out on things. Little things, like bouncy castles and swings at the park, and big things like trips to theme parks, and it can make him really frustrated. Now he has the chance to do some of these things – and it really has made a difference.”