Meet Leeds's new 'Roald Dahl transition nurse' who helps young people as they face a 'cliff edge'
The new role will support seriously ill teenagers as they take the “pivotal” step from children’s to adult services
A new nursing role has been established in Leeds that is designed to “build bridges” so that children who receive specialist treatment can navigate the “huge and scary step” into adult services.
Hannah Crawford has been hired as the city’s new Roald Dahl CMC Transition Nurse Specialist and will help seriously ill young people with the “often traumatic” transition from children’s services - and away from the wards and teams they are familiar with - and into adult healthcare.
Ms Crawford’s role within Leeds Teaching Hospitals NHS Trust involves “building bridges between teams” and keeping in contact with the patients throughout the process to make sure they’re settled.
Hannah said: “Improvements in healthcare and medical progress means we are supporting more young people than ever as they grow up and move into adult services.
“That presents a real opportunity for us to look afresh at how we partner with families to support their needs not only early on across childhood, but also at a time – this time of transition - when they can feel really scared about what happens next.”
CMC - or ‘Children with Medical Complexity’ - is a relatively new area of paediatrics that focuses on the tens of thousands of children born or falling ill with serious lifelong and sometimes life-threatening conditions.
The role, which will see Hannah work with children from around 13 and 14-years-old and to continue supporting them until they’re 25, has been established and will be funded by Roald Dahl’s Marvellous Children’s Charity.
Hannah explained that young people leave behind the family-centred model of care when they move to adult services, which can “feel like a cliff edge”.
She said: “While it is a huge step, it shouldn't feel like a lonely or uncertain one. We don’t want them to navigate it alone.
“This is a pivotal point in their lives, and we know they need someone by their side who understands every detail of their care and their individual way of dealing with it.”
She added: “Knowing their story, we can enable and empower them as they move into adult care. They deserve that support.
“In my role I am looking to meet referrals when they’re 13 or 14 years old so I can get to know them and manage their expectations and the eventual move and then I’ll stay on that journey with them until they’re at least 25.
“The role can help ensure that as young people move away from familiar routines and teams, they aren't just leaving something behind—they are stepping into a new, tailored system designed to meet their needs as adults."
Before taking on this new role, Hannah had been nursing for nearly 20 years - in paediatric care, a children’s hospice, and in children’s intensive care.
She said that for years she has focused on ensuring that young peoples’ voices are heard when discussing their medical support.
She said: “As a Roald Dahl Nurse, I’m afforded the opportunity and time to get to know them. And as you do, you have the privilege of communicating with them on their terms and the connection you build is amazing.
“It might just be a smile or a blink, but you know they are responding to you. When you read their emotions correctly, and they respond in kind it is so rewarding.”
She said that there is “still a huge amount of learning that needs to happen in the NHS” to help understand and manage the sorts of young patients that she will be looking after.
She said: “In this role as a Roald Dahl Nurse – I can bring my understanding of the young person to the wider team in adult services, and build bridges to help families navigate that gap as they get to know them.
“And as that happens, my role is to be there by their side. I want them all to know they can call on me and that they can trust me to listen. There is a long way to go but being here feels exciting and thanks to this role and to the charity, I think we can grow this service into something quite amazing.”
Roald Dahl’s Marvellous Children’s Charity has been operating for 35 years and provides specialist nurses to help seriously ill children and their families navigate the “complicated and fragmented healthcare journey they take across their child’s life”.
Roald Dahl Nurses are given the freedom to work creatively to co-ordinate each patient’s care in an efficient way, liaising with specialists and other healthcare teams across the hospital. CMC Transition Nurses are a newer but essential part of this group, bridging the huge gap between children and adult care teams.