Expert teams at Harefield Hospital held a special event earlier this month to welcome young transplant patients who will soon be moving from Great Ormond Street Hospital for Children, to have their adult care at Harefield.
It marked the fourth year of the two hospitals working together for their young patients and those attending enjoyed a tour of the hospital and a chance to meet their new Harefield clinical team in an informal setting.
They also had a chance to say goodbye to their Great Ormond Street clinicians, who came to offer support and formally hand over their care.
Olivia Cotter, 17, and Ella Armitage- Brown, 16, were among the patients attending the day. The girls have known each other since they were both treated at Great Ormond Street Hospital as toddlers.
Olivia, who had a heart transplant when she was two years old, after suffering cardiomyopathy with secondary pulmonary hypertension (a type of high blood pressure that affects the arteries in the lungs and the right side of the heart) commented: “I feel ready to move on. Great Ormond Street has been great, but it is a children’s hospital and I’m no longer a child.
“Having had a transplant has its challenges, but I live my life. I study and I work in Bicester Village. I go to parties, but I don’t drink, and I’m learning to drive. I figure it will be useful being the driver when I go out with my friends!”
Ella, who also had a heart transplant because of cardiomyopathy, added: “It’s been a really good day, the staff have been very thorough. I’ve found it helpful and so has my mum.”
Ben Sporle, 18, also diagnosed with cardiomyopathy, had a heart transplant in 2011. Ben has significant learning disabilities, so ensuring smooth transition process was vital.
Ben’s mum Kerry Adamson said: “Ben knows he has a new heart, which makes him feel better.
“It has been difficult going through this with Ben, but he wasn’t aware of the seriousness of his condition. I imagine with a mainstream child, you would have to help them manage anxiety and worry.
“This day has been really positive for us. The staff at Harefield Hospital can begin to get to know Ben and understand his specific needs.”
Also attending the day was Manoah Rivera, age 18, who has cystic fibrosis and had a lung transplant in 2017. He said: “I am living a more normal life. I was very sick before, but now I am exercising and studying. This has opened the door to so many things. I feel very pleased to be continuing my recovery here at Harefield.”
Dr Helen Spencer, a respiratory physician from Great Ormond Street who specialises in the care of patients with cystic fibrosis, commented: “I think a face-to-face ‘handover’ really works from a psychological perspective. If transition is simply doctors emailing each other and reading notes, it’s so impersonal.
“We say to our patients ‘I shared your story’ when we talk to them about discussing their health history with the Harefield doctors; it’s less clinical, less medical.
“This is an emotional time. We have often looked after these patients their whole lives. It feels like family. Transition is a big deal – for all of us.”
Dr Melissa Sanchez, clinical psychologist at Harefield Hospital explained that caring for young adults who have undergone transplants requires mutual trust and understanding between healthcare providers and patients: “These young people face the same challenges as their peers, alongside their healthcare management,” she explained.
“When young people come to Harefield, it’s vital they know they’re in a safe place. Like any teenager, they want to have fun and experience life. As a team, we aim to equip with them good information about the impact of their lifestyle choices on their healthcare. We encourage them to have an open dialogue with us about their experiences.
Amanda Hawkyard, a clinical nurse specialist at Great Ormond Street Hospital for Children said she believed the transition day is vital: “It helps parents trust the new clinical team – they can see that we at Great Ormond Street have full confidence in Harefield Hospital’s clinical expertise – this is very reassuring for them.”