8 September 2026
Every Child Deserves to Belong
For children living with life-threatening or life-shortening conditions, school is about far more than lessons. It's about friendships, identity and feeling part of the world around them. Jo, Family Link Team Manager at Noah's Ark Children's Hospice, explains why education can transform a child's wellbeing and how schools can make all the difference by choosing connection over fear. For many families, hospital appointments, complex treatments and medical emergencies can make school feel like an impossible luxury. Yet time and again, Jo hears the same message from the children she supports. "When we ask children what really matters to them, they often say school. Not because of exams, but because that's where their friends are. It's where they feel like themselves." For Jo, education isn't simply about academic progress. It's about childhood itself.
Staying Connected Matters
Perhaps the greatest risk isn't falling behind academically. It's being forgotten. Children receiving hospice support may spend weeks or months away from school while undergoing treatment or recovering at home. "If they're not physically in school, the gap between them and their classmates gets wider," Jo says. "Families often worry they're bothering school. Schools worry they're bothering families. Meanwhile nobody makes contact." Jo believes breaking that silence is one of the most powerful things a school can do. She is quick to point out that schools are rarely uncaring. "I came from education myself. Teachers are under enormous pressure." Often, the biggest issue is communication.
Jo recalls supporting a young person, Nasif, who felt completely abandoned by his school after becoming too unwell to attend. As the months passed with little meaningful contact, he came to believe that the school simply no longer cared about him. When Nasif was eventually well enough to return to secondary school, he was now a wheelchair user and already anxious about standing out from his peers. The school's proposed solution was to teach him separately in the library, the only accessible space on the ground floor. Jo's reaction was immediate: "Absolutely not." She believed that Nasif had the same right as every other child to learn alongside his classmates. While teaching him in the library might have solved a practical problem for the school, it created a far greater emotional one for Nasif. At a time when he was already worried about feeling different, separating him from his peers would only reinforce his sense of isolation and exclusion.
Jo explains that children returning to school after months in hospital often feel isolated and uncertain about where they fit in. "The last thing they need is another reminder that they don't belong," she says. Rather than accepting a separate learning arrangement, Jo encouraged the school to think creatively about reasonable adjustments that would enable Nasif to learn alongside his classmates.
Although schools may describe themselves as inclusive, Jo believes genuine inclusion requires more than good intentions. "I always ask schools to see things through the child's eyes," she says. Rather than speaking on his behalf, Jo supported Nasif to speak directly with senior leaders. "The school listened," Jo recalls. What followed, she says, was a complete transformation. Reasonable adjustments were put in place for Nasif's GCSEs, and the exam boards agreed flexible arrangements around his medical treatment. A dedicated member of staff checked in with him regularly, and teachers visited him at home. "They went from feeling like the enemy to becoming his biggest cheerleaders," Jo says.
For Jo, that's proof that schools don't have to get everything right first time. "They just have to be willing to listen." Nasif, now 20, gained an incredible 13 GSCEs, went on to get three A Levels and is now studying Geography at University College London. Learn more about Nasif’s inspiring journey to academic success. https://noahsarkhospice.org.uk/news-and-stories/nasif-a-level-success-leads-to-university
Building Bridges Between Families and Schools
Much of Jo's work happens behind the scenes. Education is discussed from the very first assessment with every family Noah's Ark supports. Family Link Workers attend Education, Health and Care Plan (EHCP) reviews, accompany parents to school meetings and advocate for children when relationships begin to break down.
Helping Children Stay Present
Sometimes technology can bridge the gap. Noah's Ark has used AV1 robots to allow children receiving treatment to remain part of school life from hospital or home. The AV1 robot sits in the classroom while the child logs in remotely. "They can join assembly, sit with friends at lunchtime or even go on school trips."
For Jo, the technology isn't really about education. "It's about connection." Children don't have to worry about how they look after chemotherapy or whether they're well enough to appear on camera. "They're still present. They're still included."
Talking Honestly About Death
Jo believes schools also need greater confidence when talking about illness, death and bereavement. "We're not very good at talking about death," she says. Avoiding clear, direct language can create confusion, particularly for younger children and those who are neurodivergent. "If someone has died, we should say they've died." She also encourages schools to continue acknowledging children after they have died. Doing so sends a powerful message to the whole school community: that child mattered, and they will not be forgotten.
Every Child Deserves to Belong
If Jo could change one thing about education, it wouldn't be new policies or additional paperwork. It would simply be helping schools feel confident enough to stay connected. "I'd want schools to hold children in mind." Sometimes families won't answer the phone. Sometimes they won't be ready to talk. "But they'll know you called." And that simple act can remind a child and their family of something they need to hear most: You still belong.
