Every day, the children we support with life‑limiting conditions rely on the comfort, safety and familiarity of home. For families facing the unimaginable, being able to care for their child in their own space, surrounded by favourite toys, familiar routines and the people they love, can make an extraordinary difference.
But what many people don’t realise is that this kind of specialist hospice‑at‑home care is only possible because of the generosity of others. New data from Hospice UK shows that hospices must raise £3.8 million every day to keep going. With 82% of hospice care now delivered outside inpatient units, including in people’s homes, this support has never been more vital.
Fenn’s Story
Two‑year‑old Fenn lives with Spinal Muscular Atrophy (SMA) Type 1, a rare and life‑limiting neuromuscular condition. SMA affects almost every part of her daily life – breathing, swallowing, movement and muscle strength – and her parents have had to navigate hospital stays, specialist equipment and constant uncertainty.
Thanks to Jessie May nurses, funded in part by Gifts in Wills, Fenn can be safely cared for at home. Our team provides specialist nursing and emotional support, as well as a well‑deserved break for parent carers, giving Fenn’s family the space to enjoy the little moments that matter, even as they navigate an extremely difficult journey.
Fenn’s story is not unique. Many families across Bristol and the South West depend on hospice care delivered in their own homes.
What Bristol thinks about hospice care
The new figures from Hospice UK reveal some striking gaps in public understanding:
- 49% of people in Bristol would prefer palliative care at home
- 15% still believe hospice care only happens on an inpatient ward
- 39% don’t know what support hospices offer to make home care possible
- 54% are unaware that hospice services are free
With demand for palliative care expected to rise by 25% by 2048, and hospices facing increasing financial pressures, raising awareness has never been more important. Hospice‑at‑home care relies heavily on voluntary donations and Gifts in Wills to continue.
Why gifts in Wills matter so much
Across the UK, 127 hospices, including Jessie May, have joined the This is Hospice Care campaign, encouraging people to consider leaving a gift in their Will.
For Jessie May, gifts in Wills help ensure that children like Fenn can receive specialist nursing care at home, and that parents, siblings and wider family members have the support they need through life, death and bereavement.
Kath Jones, our Individual Giving Manager, explains:
“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 need them. Every legacy, no matter the size, helps us give children the chance to be at home with the people they love.”
Jessie May was founded on the belief that families should have the choice to care for their child at home in their final days. That belief still guides everything we do, and gifts in Wills help ensure we can continue to be there for families for as long as they need us.
By leaving a gift in your Will, you can help seriously ill children stay where they belong: at home, surrounded by love.
To find out more about leaving a gift in your Will, visit: https://jessiemay.org.uk/support-us/give-money/gift-in-will/
