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Hospice in the Weald for Children makes all the difference for families

This Children’s Hospice Week (17-23 June), Hospice in the Weald is celebrating the inspirational children and families it supports and the difference its specialist staff make.

There are 99,000 children in the UK living with a life-limiting or life-threatening condition and that number is increasing each year, according to Together for Short Lives. Hospice in the Weald for Children was launched  last year to help meet this growing need in East Sussex and Kent and now provides care and support to more than 80 children, parents and siblings. This includes home visits for respite care, support with hospital visits, memory-making activities and music therapy. 

Caring, playful and energetic, Lola is among children who receive home visits from the Hospice’s specialist team. She loves the things many other eight-year-olds enjoy –headstands, arts and crafts and watching TV with her siblings. However, Lola’s complex health needs, including chronic lung disease, brain damage and an absent swallow, mean everyday life presents greater risks and challenges.

Lola and Hayley from Hospice in the Weald for Children

Lola lives with her parents, Jade and Phil, and siblings Jack, aged 12, George, aged 11, and five year-old Ava. Mum Jade said: “Lola’s a whirlwind! She’s active and inquisitive – she’s two steps ahead of us! She is caring, thoughtful and so friendly to everyone.

“Lola is connected to a feeding tube for 18 hours a day and is susceptible to infections. Sadly, she can’t do many things the rest of the family enjoy, such as going to theme parks, trampolining and the beach. But she’s a happy girl and just sees the good in everything.”

Reflecting on the support they now receive, Jade said: “At first I didn’t realise how much a hospice would help as, for six years, we’d been the only ones caring for her. Lola has an extensive care plan so I’ve worried about leaving her with anyone else. That’s why the visits from the team are so important – because I know that everything will be done the way that I would if I was there. To get the care in our own home, with all the things she needs around her makes such a difference.

“Lola loves the ladies from the Hospice, she knows them all by name. We know she’s in safe hands, having fun. Before, we never had any respite. It gives the rest of the family time to look forward and book things to do. And we love the family days at the hospice.”

Lola and Hayley

When Lola was unexpectedly admitted to hospital, the Hospice’s team was there to support them. Jade explained: “I hadn’t left the hospital in a week, so the Hospice staff came to the ward to be with Lola so I could get home to see the other children and refresh. It made such a difference. We are very grateful.”

Hospice in the Weald for Children is reliant on the generosity of the local community to fund its free care, which can be a lifeline to children and families.

Tracy Smith, who heads Hospice in the Weald for Children, said: “Every child we work with holds a special place in our hearts and it’s a privilege to be able to care for them and lighten the load for families. We believe all children should have the opportunity to play and grow, no matter what the challenges.

“Many people are unaware of the daily challenges these families face so Children’s Hospice Week is a chance to raise awareness and to show the vital need for the free care we offer. We’d like to thank everyone in our community who supports the Hospice so that we can continue to be there for the inspirational children and families who need us.”


Children's service turns one

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