'We need more Hannah's': Leeds mum praises nurse's life-changing work

A Leeds mum has praised the support of a newly appointed Roald Dahl Transition Nurse Specialist, who is helping her daughter prepare for the big move from children’s to adult healthcare services.

Danielle Hedley, 41, feels “less afraid” about the transition for 17-year-old Ruby, who will move after celebrating her 18th birthday in August. The teenager lives with Williams Syndrome, after being diagnosed with the rare genetic neurodevelopmental disorder when she was four months old.

Ruby lives with complex medical needs, undergoing two heart surgeries as a baby, an open-heart surgery again as a child after an aneurysm, and lives with a TPN tube, which was inserted after her intestines failed when she was 10 years old and a stoma after bladder surgery two years ago.

Now, as she approaches her upcoming birthday, Ruby will be moving from the family-centred children’s ward to adult healthcare services. The transition can be exhausting for both patients and parents, with Ruby’s mum Danielle explaining: “You go from going to somewhere you’ve gone all your life to a whole new place, there’s no in-between.”

This is where Hannah Crawford, 39, comes in. The recently appointed Roald Dahl CMC Transition Nurse Specialist works within Leeds Teaching Hospitals NHS Trust to help bridge the gap for patients and their parents as they prepare to make the move.

Hannah said: “My role is to support families like Ruby and Danielle, who have complex medical needs and transition them over into adult services.

“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. My role is focused on joining them as they make this move, taking away the uncertainty that families often feel by working with adult teams and helping them see that the right care is in place.

“Historically, around 20 years ago, children with complex medical needs didn’t really make it, unfortunately, into adult services, whereas now we’ve got this large cohort of children with complex medical needs who are now making it into adult services, and it’s about making sure that we get that right.”

Ruby’s care involves more than one consultant or medical team, with Danielle explaining that she needs “a very personalised plan if she’s poorly,” adding, “she doesn’t follow a book, she does Ruby.” She also has some learning difficulties, which can make navigating the move harder. Danielle said: “The learning disability adds to it all, it makes it harder because people don’t get it.”

Hannah said: “A lot of children with complex medical needs will have more than one consultant involved in their care, so I would coordinate the care with all their different consultants, and also the ones in adult services, so we’ll do a lot of joint clinics.”

She will also be there to support Ruby throughout the transition, Hannah said: “When Ruby goes over to adult services, I’ll go to all her first appointments with her to make sure that everyone is aware.”

Hannah’s role, which will support children from the age of 13 to 14 years old until they’re 25, has been established and funded by Roald Dahl’s Marvellous Children’s Charity. The position gives her the freedom to work creatively to coordinate each patient’s care in a personalised way, liaising with specialists and other healthcare teams across the hospital.

Hannah said: “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, to the charity, I think we can grow this service into something quite amazing.”

Asking Ruby how she feels about transitioning into adult services with Hannah at her side, she said she feels, “good”.

Praising Hannah’s support in helping her feel “more understood”, Danielle said: “It might be an ‘I’ll sort that Danielle’ when I am worried about how something will change in community care. Or it might just be my realising that she gets completely what Ruby is feeling and is keen to communicate that to the new teams. But suddenly I feel more understood, that Ruby has this expert and friend by her side. Someone who is going to stay on this road with her for many years to come. And I am less afraid.

“I don’t know how I would have done it, I dread to think how many arguments I would have had if Hannah wasn’t doing the job she’s doing. We could do with some more Hannah's. We need a team of Hannah’s.”