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“He is funny – he has a really good sense of humour, loves lawnmowers, hats and Mr Bean, enjoys baking and loves being outside digging and looking for insects.”
“All week he asks us, is it Saturday yet? Because every Saturday morning, he comes and lays in our bed and tells us jokes that he makes up – which is really clever of him. He is such a funny boy; I wish I could get a snapshot of his personality so I could show you what he is like.”
This is how Lucy Ennis describes her 9-year-old son, Raymond, who has lots of complex health issues.
“Raymond was OK until he was 18 months old,” says Lucy, “then he started falling over all the time. The GP said he would grow out of it, but he kept doing it, he couldn’t get up the stairs and started regressing. Our Health Visitor noticed that Raymond wasn’t right, so referred him to a consultant. He had an MRI and hundreds of tests, but we still don’t know what is wrong with him. He has a progressive neuro degeneration, but no diagnosis.
“Raymond has lots of symptoms; he has epilepsy, his mobility is awful – he is really stiff and has low muscle tone. He spends most of his time now in his wheelchair, whereas two years ago he would be in and out of it and before that he didn’t even have one. He is doubly incontinent; he’s got a peg for feeding because his muscles have all deteriorated in his throat and he can’t swallow properly. He has pureed food orally, so he still eats; he still likes his food but doesn’t like to drink – I think it’s too much of an effort for him.”
It was 2015, when Raymond was 5 years old, that the family were first referred to their local children’s hospice, Chestnut Tree House. “At first I kind of rejected it because I didn’t feel that he was bad enough to use the service. I think that at the time I didn’t really want to accept that was the route that he was going down, but they persuaded me to just try it. I did and I haven’t looked back since.
The family access a range of services at Chestnut Tree House, a firm favourite with Raymond is his over-night stays at the House where he loves going on adventures out in the local community, going on walks to see the horses, and baking yummy treats with the care team.
“When I first visited the House, I was taken aback. When you say the word hospice everyone has the same kind of ideas – but it is a happy place. He just goes there and has fun; he doesn’t see it as anything else.”
“When he stays at the House I phone to check-in, and he doesn’t want to speak to me because he is having such a great time. He’s like ‘I’m fine Mum’, he just loves it over there”.
A Chestnut Tree House community care support worker, Jackie, also regularly visits Raymond at the families own home.
“Raymond and Jackie have a good relationship. She will come and take him out – his favourite thing is to go to Eastbourne Harbour and have a carbonara at Simply Italian!”
“Raymond has a younger brother, Mason, and when Raymond is with Jackie, we spend time just with him. We take him swimming, on walks and to the cinema and he really enjoys having time with Mummy and Daddy without having to stop every five minutes”.
“Jackie is there if we need to speak to her or if we need advice about anything. Knowing that Chestnut Tree House is there helps us a lot because we can’t cope with it on our own”, says Lucy. “If we’re feeling really stressed about something, they are there.”
“A lot of the time you feel you are on your own but having that support, having someone who is fighting your corner for you for once is nice. Sometimes things have got so hard and when you feel like giving up you know they are there, they can give you that respite that you need. They are our lifeline.”Read more family stories