Jessie May: Bristol Family urges support for children’s hospice-at-home care
Jessie May: This Hospice Care Week, the family of a girl with a rare life-limiting condition is urging support for vital home-based hospice care.
Hospice care is more than you think. Many people – including commissioners – assume that hospices only provide end-of-life care or that the majority of services are delivered in inpatient units. In fact, hospices play a vital role in supporting children and families in their own homes, offering essential care that is often less understood.
This year, the Bristol charity Jessie May is proud to highlight the incredible difference home-based hospice care can make, helping children like Margot’s live fuller lives despite complex medical needs.
Born eight weeks premature and diagnosed with the extremely rare condition Trisomy 9 Mosaicism, Margot has received ongoing care from Jessie May since her early days. Her family credits the hospice’s consistent, specialist support and admits they don’t know what they would do without them.
Margot’s Dad, Greg, says: “I can’t imagine life without Jessie May – they have become an integral part of Margot’s life, our lives and they give us that huge love and support that is invaluable. You’ve only got to see in terms of how they have integrated with our family and the development and support they give Margot. It’s a very unique service that they offer and I would encourage anyone to support them.”
For Margot, who is non-verbal, her reaction to seeing the familiar purple Jessie May T-shirt says it all. “Her whole face lights up,” says Mum Vicks. “She spins with excitement. She knows she’s going to have fun, get attention, and just enjoy being a child.”
That time is precious. In a life filled with hospital appointments, operations and medical procedures, Jessie May visits are different. They bring lightness to heavy days. And when crisis strikes, they’re there too – a reassuring constant in the toughest moments.
Jessie May nurse Lois adds: “Providing care in the home allows us to support the whole family, not just the child. Many families don’t realise how much hospice care extends beyond end-of-life support. Our work in the home gives children like Margot a chance to grow, learn, and enjoy life, while giving parents the reassurance and breaks they desperately need.”
It’s clear how vital this home-based care is, but rising costs and uncertain funding are putting it under increasing pressure. Hospice Care Week is a crucial opportunity to raise awareness and highlight why investment in community-based services is so important, ensuring families like Margot’s can continue to receive this life-changing support.
“Outside of medical intervention, Jessie May has been the single biggest positive impact on our lives,” says Vicks. “We’re lucky. We’re supported at the moment. But we know so many families just like ours who aren’t or who have lost support, and they are struggling. It’s hard to imagine how they cope.”
“At Jessie May, we believe hospice care is about more than just end-of-life support – it’s about enhancing the quality of life for children with life-limiting conditions and their families.” Says Jessie May’s CEO Daniel Cheesman. “Our hospice-at-home service allows families to experience joy, create memories, and find comfort in the familiar surroundings of their own homes. However, this vital service is under
increasing pressure due to rising costs and uncertain funding. We urge the community to support us, ensuring that families like Margot’s continue to receive the compassionate care they deserve.”
Because hospice care is more than you think.
Show your support this Hospice Care Week and help families like Margot’s thrive at home. For more information, visit – Support us – Jessie May
Read more charity news here https://directlocalbristol.co.uk/charity-news
