Charity Jessie May nurse shares the powerful bond behind years of care.
As we mark International Nurses Day, Jessie May, children’s hospice at home, is proud to celebrate the incredible work of their nurses – professionals whose compassion, resilience, and commitment go far beyond medical care. Their support brings calm, joy and continuity into the lives of families navigating the most difficult of journeys.
One of those nurses is Mary, who has been supporting 15-year-old Hope – who is nonverbal and uses assistive technology to communicate – since she was around six years old.
“We’ve watched her grow up,” Mary says. “We’ve been with them since the beginning of Jessie May in Swindon and we’ve been there for some really major life events.”
At the heart of this care is trust – something that took time to build. “Hope’s mum is very independent and capable. It took a while for her to really get used to us,” Mary explains. “But now, I feel we are trusted. And that means everything.”
Over the years, Mary has supported the family through transitions like the move to home schooling, always working to meet the family’s changing needs. And amid the complex care, it’s often the small moments that shine brightest.
“Hope loves being read to – it’s part of her routine,” Mary smiles. “If you stop, she can get quite grumpy!” After years of caring for her, Mary knows Hope inside out – from her favourite stories to the little signs that show how she’s feeling. Reading isn’t just an activity; it’s a moment of connection and comfort that’s become a staple in every visit.
But the role of a Jessie May nurse extends far beyond those few hours of care. “It could be easy to wonder what a three-hour visit really means,” Mary reflects. “But those hours allow families to do the things they otherwise couldn’t – whether it’s attending their teenager’s graduation, something as simple as doing a food shop, or getting some well-deserved rest. It’s not as easy for them to just ask a family member as they aren’t medically trained. That’s what makes the work so special – so these families can still do the everyday things that bring a sense of normality and joy, even in the face of the most complex challenges.”
For Mary and her colleagues, the privilege of being welcomed into a family’s home isn’t taken lightly.
“You’re on their clock, in their space,” she says. “And while there are tough days – especially when a child dies – they are far outnumbered by the positive ones. People often assume my job must be really sad. But that’s not how I’d describe it. It’s full of life.”
And when it comes to what keeps her going, Mary is clear:
“We can’t change the outcomes for these families. But if we can make a difference – if we can make the journey a little easier – then that’s a good thing.”
Home-based nursing care is not only vital for children with life-limiting conditions, it’s often the only way families can stay together, in a familiar and comforting environment. According to Together for Short Lives, 99,000 children in the UK live with life-limiting or life-threatening conditions – and demand for specialist palliative nursing care is growing.*
This is why the role of Jessie May nurses is so important. As medically trained specialists in children’s palliative care, they provide expert support tailored to each family’s needs. Whether it’s enabling a parent to attend a family milestone, offering a safe space for a sibling to talk, or simply reading a favourite story to a child in their own home, Jessie May nurses help families feel less alone. They step in during life’s most difficult moments and help families reclaim some of the dignity and connection that illness so often takes away.
Their presence doesn’t just support the child – it supports the whole family. And on International Nurses Day, we’re proud to shine a light on their work and the profound difference they make every single day.