Leicester teenager’s hospital advice helping train future doctors and nurses
‘Lexi’s Letter’ is now being used by healthcare students across the country to improve communication with young patients
The words of a Leicester teenager who died after treatment for a rare immune deficiency are helping shape the next generation of doctors and nurses.
Lexi Johnson spent years in and out of hospital after being born with a rare immune deficiency. At the age of 12, she underwent a stem cell transplant in the hope of living a healthier life free from constant medical treatment.
Lexi sadly died in 2025 at the age of 14 from complications linked to her transplant.
During months of intensive care and isolation in hospital, Lexi began writing down simple but important advice for healthcare staff on how to better support young patients.
After one particularly difficult day of treatment, she created what would later become known as ‘Lexi’s Letter’ — a list of tips focused on communication, empathy and helping children feel more involved in their care.
What does Lexi's Letter include?
Lexi's advice included:
- Introducing yourself clearly
- Explaining why you’re there
- Asking patients what they would like to be called
- Making sure young people understand what’s happening during treatment
Lexi's Dad, Andy Johnson, said Lexi wanted young patients to feel more involved in their treatment:
"Lexi very much drove the understanding of her treatment so that she was part of the process throughout."
Now, Lexi's words are being used by teaching staff at the University of Leicester, including the Stoneygate Centre for Empathic Healthcare, to help train student doctors, nurses, midwives and other healthcare professionals.
Lexi's Mum, Liz Johnson, said Lexi wanted to turn her experiences into something positive:
"Lexi wanted to make the most of her tough time to make things better for other people."
"Lexi wanted to be a Children's Nurse... so, I think in some way, this is her way of doing that."
The letter has also been turned into a short animation, voiced by Lexi’s younger sister, Ella, helping bring her message to healthcare students across the country.
Lexi’s parents, Liz and Andy, say they hope her experiences will help improve communication and support for other young patients facing long periods in hospital.