Children’s Hospice Week takes place June 17-23, we head to Chestnut Tree House to find out more.
Chestnut Tree House cares for around 300 children and young people with life-shortening conditions across Sussex and South East Hampshire, all of whom are unlikely to reach adulthood.
Children’s Hospice Week is the UK’s only awareness and fundraising week for the 49,000 children and young people in the UK with a life-limiting or life-threatening condition, their families and the children’s hospice and palliative care services that support them.
The theme of the week is ‘Moments that Matter’ and will focus on how Chestnut Tree House and other children’s hospices across the UK help families create special memories and important moments in their lives together.
This might be a first swim in Chestnut Tree House’s hydrotherapy pool, hunting for bugs in their woodland walk, or simply spending quality time together as a family while their specialist care team are there to help.
Caroline McCullough, clinical nurse manager at the hospice says: “A lot of people misunderstand what a children’s hospice is, and expect it to be a sad place, only associated with illness and dying.
“Of course providing specialist palliative care is our priority, which does include end-of-life care and supporting families in their final moments together.
“But there are also a lot of happy moments at Chestnut Tree House, where children and young people can enjoy the facilities and take part in a range of activities, from relaxing in our multisensory room to splashing about in the hydrotherapy pool.
“For us, our role is very much about children living for the now, and helping families create a lifetime of memories, however long they have together.”
On a visit to the House, 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, and not carers, and where siblings have people to talk to who understand.
As well as care provided at the House, there is also a community nursing team who visit families at home, taking children out to explore their local community or simply giving tired families and carers the chance to take a well-earned break.
Then, when the time comes, Chestnut Tree House helps 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 more than £3.9 million every year to provide its specialist care services and less than 6 per cent of that comes from central government.
Here is Cordelia's story
Cordelia is described by her mum as a force to be reckoned with.
A lover of life who is constantly on the go, who loves swimming, singing and generally getting messy.
But, on a bad day, the nine year old can’t even get out of bed due to PCDH19 epilepsy, an incredibly rare form of epilepsy that affects only around 400 girls worldwide.
Cordelia can have up to 40 seizures a day for a few days at a time, and there is very little parents Sharon and Kevin can do to control them.
“We never know when she might have a seizure, they literally happen out of the blue,” says Sharon.
“We’ve had seizures as we’re getting in the car before, or when she’s happily bouncing on the trampoline – you just don’t know.”
Day to day the family can’t make plans. Sharon doesn’t even travel very far from Cordelia’s school because she could be phoned at any moment to go in and check on Cordelia.
And, outside of school, the family can’t travel far as there are only two hospitals in the country able to give Cordelia the care she needs – the one near home and the one near Chestnut Tree House.
This means that Chestnut Tree House is the only place the family can spend time together away from home. It is also the only place that Sharon and Kevin get a full night’s sleep.
“It’s just a chance not to be looking at monitors or listening out for her,” says Sharon. “That first day, when we arrive and we just don’t realise just how tired we are, all we want to do is sleep and eat.”
Whilst at Chestnut Tree House Sharon and Kevin will spend time with Cordelia and also spend time as a couple.
“We always do her bedtime routine, we always say goodnight because, with a child like Cordelia, we just don’t know if we’re going to see her tomorrow. But it’s also our only chance to spend some time just the two of us. We can mooch around and do what we fancy; get in the car and just see where we end up, watch movies, or just sleep.
“That might sound really boring, but we don’t ever stop at home. Cordelia is on the move the whole time, she’s a busy, busy girl. It’s just nice for someone else to be run ragged for a while. And we know that she is having fun and doing stuff she loves.”
As well as short breaks at the hospice, the family has a Chestnut Tree House community care support worker who visits them at home once or twice a month.
“She takes Cordelia swimming, and then they go to McDonalds and maybe softplay. It’s become their little ritual and Cordelia loves it, she can’t wait for Clare to come. And it gives me a chance to catch up on housework or actually sit down for five minutes.
When asked to sum up Chestnut Tree House Sharon says “it’s safe for feeling the way you want to feel, for doing what you want. And I just love that, whilst I’m being indulgent, I know Cordelia is doing things that she loves.”
Kevin describes the feeling as “like driving your car into heaven”.
For more information, please visit www.chestnut-tree-house.org.uk