With children going back to school this week, families supported by Jessie May, children’s hospice at home, face a far more complex journey than simply sorting uniforms or packing lunchboxes. For children with life-limiting conditions, preparing for the school gates can involve months – sometimes years – of preparation, meetings, training, and collaboration between parents, schools, health teams, and the hospice team.
One of the most important tools in that process is an Education, Health and Care Plan (EHCP). Recent figures show that more than 5% of children in England now have an Education, Health and Care Plan (EHCP) – a number that has risen by 11% in just one year.* These plans are a lifeline for families supported by Jessie May, helping their children access education safely. But as demand grows, resources are stretched and the hurdles to securing support become even greater. Still, an EHCP can transform what’s possible: opening doors parents once thought closed, and giving children the chance to enjoy learning, make friends, and experience the everyday joys of childhood.
Emma, mum to Izzy, knows this journey well. Izzy spent her early years in and out of hospital, undergoing dialysis before receiving a kidney transplant just before her third birthday. Socialising, walking and talking were all delayed milestones. When it came time to start nursery and school, Emma faced countless hurdles:
“We battled to get Izzy into nursery, and later to hold her back a year before school – she just wasn’t ready. After her kidney transplant she finally began to catch up, but it had been such a long road. The first nursery put up barrier after barrier, until we eventually found a setting that truly welcomed her. Even then, we had to secure an EHCP, one-to-one support, and make sure staff were trained in everything from tube feeding to medication and personal care. By the time she reached school in 2021, it was such a relief to see the staff step up, work with the hospital teams, and make sure Izzy could join in safely.”
Despite this support, the daily reality of school brings an emotional toll. Every September, Emma feels the same anxiety most parents do – but magnified. “When she goes back to school, within a week or two she’s exposed to so many bugs. If Izzy gets a high temperature, it isn’t just a day off – it means blood tests, hours in A&E, sometimes even a hospital admission.”
Even attendance – a simple statistic for most families – becomes a source of stress. Because of her many hospital appointments, Izzy’s record is marked down as “concerning” despite her never missing a day for sickness. “It’s not really fair,” Emma says. “If you looked at her attendance without the hospital trips, it would be 100%. But the system doesn’t always recognise that.”
Still, Emma is grateful for the dedication of the school and the wider team around her daughter. “The lovely thing about that side of it is with the school – it’s just happened. I’ve not had to do any of the phone calls. They coordinate with the hospital teams, get everyone trained, and make sure Izzy can come to school safely.”
The amazing thing is that Emma once doubted whether Izzy would ever be able to go to school at all. Without Jessie May, the hospital, and the many teams who supported her in those early years, Emma believes it simply wouldn’t have been possible. “We couldn’t have got here without all of you,” she says.
For most children, the first day of school is exciting. For Izzy, it was nothing short of remarkable. Jessie May nurses had watched her grow and walked alongside the family through some of their hardest times, so seeing her step into school ready to learn was an emotional and proud moment – a milestone that felt like a victory for everyone who had helped her get there.
Nurse Charlotte reflects, “We’ve supported Izzy and her family through some very tough times, so to see her walk through the school gates was incredibly special. We know just how much effort went on behind the scenes to make that day possible, and being able to play even a small part in her journey was a real privilege. Moments like that are why we do what we do – it’s not just about care at home, it’s about helping children like Izzy enjoy those milestones that every child deserves.”
Looking back on how far Izzy has come, Emma is clear about the impact of the support surrounding her daughter:
“Izzy wouldn’t be where she is today without the hospitals, the schools, and services like Jessie May. It takes a whole network to give these children the chance to thrive. Seeing her go to school, make friends, and just be herself – it makes all the preparation worth it.”
For Jessie May families, “back to school” is never simple. But with determination, teamwork, and the right support, it can be the start of something extraordinary.