We have launched a powerful new film to help raise awareness of the real life impact of children’s hospice care on local families and draw attention to the continuing funding pressures for hospices across the country, as we mark this year’s Children’s Hospice Week.
‘What is Julia’s House?’ challenges the often held perception that children’s hospices are solely for end of life care and bereavement. In reality they are vibrant places, offering vital care and support for babies, children and young people with life-shortening conditions and their whole family.
“People often say to our staff that Julia’s House must be a sad place to work. Of course there are sad moments and we are by the side of families for those moments, but for most days at the hospice and when we’re out in the community, our care brings lots of fun, laughter and smiles and that’s the experience the families we support share with us,” said Mike Barlett, Deputy CEO of Julia’s House. “But for many parents, when a children’s hospice is first mentioned, they feel it’s not for them. So, in Children’s Hospice Week we have two aims. We want to share the real life impact of our care, the difference it can make to local children and families, so the word ‘hospice’ isn’t a barrier to them in accessing our care. And we also want to draw public attention to just how under pressure this vital care is from a funding perspective.”
Last year, Julia’s House gave 25,556 hours of care to families across Dorset and Wiltshire, with seriously ill children having the chance to enjoy everyday childhood experiences – from painting and crafts to music and baking - that are otherwise challenging or impossible for them to access. The hospice also hosts sleepovers, gaming sessions and festivals, giving children the chance to socialise and make friends.
Caring for a seriously ill child affects the whole family and Julia’s House care includes one-to-one support and activities for siblings, special events for parents and dedicated family support workers to provide help and advice on applying for grants and specialist equipment. The hospice also offers complementary therapy for the whole family to help with symptom management, pain and stress relief as well as counselling services.
We thought a hospice wasn’t for us
Like many families, Amber and Mark who feature in the new film with their daughter Blake, weren’t sure that a hospice was right for them. The word ‘hospice’ carried a weight that felt at odds with where they were - caring for an energetic, joyful eight-year-
old and they weren’t sure what to expect. But when they saw what Julia's House was offering, they didn’t look back: “We were a bit lost. It was like being on the Titanic, life was all consuming, but Julia’s House gave us light, something to look forward to in a challenging month,” shared Amber. “They took the time to get to know Blake properly -her quirks, the things that delight her, the things that unsettle her and the signs that can indicate a seizure.
“We did feel apprehensive - opening up to strangers, accepting help from an organisation whose name has connotations at odds with our situation felt counter-intuitive,” continued Amber. “But what we found was that hospice also stands for laughter, new experiences, support and friendship. And that’s been invaluable for all of us. Saying yes to support from Julia’s House was the best decision we’ve made.”
Specialist care for complex conditions
Children’s hospices like Julia’s House are caring for children with increasingly complex conditions – Blake is just one of 70 children worldwide with the extremely rare genetic condition HNRNPH2. Children are also living longer with these conditions, so the care and facilities provided are continually being adapted to meet the changing needs of families.
“So much of the care and support we provide just isn’t available to families anywhere else, yet for them it makes a life-changing difference,” added Mike. “We need to ensure that awareness of what children’s hospices do and the importance of funding this vital care is known by as many people as possible. That’s what we hope to achieve with our new film and by supporting the Children’s Hospice Week campaign. We want people to know how families experience our care and how much it means to them, and the difference a donation can make to that care. Without that support, we couldn’t be the light for families just like Blake’s. We’d love people to share our new film as widely as possible.”
We receive just eight per cent ongoing Government funding, relying on the support of the local community to fund our care. Without that support, Julia’s House would not exist. We are continuing to campaign for a sustainable and long-term solution to Government hospice funding in England, alongside Hospice UK and Together for Short Lives.
‘What is Julia’s House?’ was created by local film and video production company, Mambo Media.