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Hospice says home care for children is at risk without legacy giving
Jessie May, the Bristol-based hospice-at-home charity, has called for more people to consider leaving Gifts in Wills as growing financial pressures threaten specialist care for families.
With Spinal Muscular Atrophy (SMA) dominating national headlines and renewed calls for newborn screening across the UK, the charity says the issue remains deeply personal to its origins and mission.
Jessie May was founded in 1996 by Chris and Philippa Purrington, following the death of their baby daughter Jessica May, who died from SMA when she was only 4 1/2 months old.
Three decades on, children with SMA and other life-limiting conditions continue to rely on Jessie May’s specialist nursing care in their own homes.
Among those supported by the charity is two-year-old Fenn from Bristol, who lives with SMA Type 1
Hospices across the UK must collectively raise nearly £4m every day to continue operating, yet many families are unaware that hospice services are provided free of charge and depend heavily on voluntary donations and legacy giving.
In Bristol, almost half of residents say they would prefer to receive palliative care at home, but more than half do not realise this support is available at no cost.
Among those supported by the charity is two-year-old Fenn from Bristol, who lives with SMA Type 1.
Her condition affects her breathing, movement and muscle strength, requiring complex daily medical care. Jessie May nurses provide respiratory support, feeding assistance and emotional reassurance to her family, enabling Fenn to remain at home rather than in hospital.
The model of the charity allows children with life-limiting conditions to receive care in the comfort of their own homes, avoiding stressful hospital trips and helping families create special memories.
“Before Jessie May, leaving Fenn with anyone else felt impossible.” Fenn’s mum Wendy explained.
“I would write a four‑page instruction booklet before a short hospice visit. But now I know I can trust the nurses completely. And because they come to the house, the support is easy, accessible, and free from the stress of packing medical equipment or arranging transport.”
The charity says Gifts in Wills are essential to sustaining this lifeline service.
Kath Jones, individual giving manager at Jessie May, said: “Families like Fenn’s rely on the reassurance of knowing specialist care can come to them at home, where their child feels safest.
“Gifts in Wills help make that possible. They ensure our nurses can be there for families whenever they’re needed, offering expert care and emotional support during the most difficult moments. Every legacy, no matter the size, helps us give children the chance to be at home with the people they love.”
To find out more about more, visit www.jessiemay.org.uk/support-us/give-money/gift-in-will
All photos: Jessie May
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