'Lexi's Letter' helps train future medics

A letter written by a teenage girl from Leicester who died in hospital is being used to train future doctors and nurses around the world.

Lexi Johnson, who was born with a rare immune deficiency, was approved for a stem‑cell transplant when she was 12 and endured long periods of isolated hospital care supported by her parents. She died in 2025 aged 14 due to complications from the transplant.

During her time in hospital, Lexi wrote a letter full of tips for medical staff working with young people. Now it is being used by several hospital trusts in England, as well as Tasmania and Canada.

Her mother Liz said her daughter "wanted to use her voice to make a difference".

Known as Lexi's Letter, the missive urges healthcare professionals to clearly explain their role, speak directly to the young patient, ask what they prefer to be called and check how they want to receive any difficult information.

The letter has also been made into a short animation, voiced by her younger sister, Ella.

Lexi died on 3 September 2025, but watched the first half of the animation the day before she died and said: "That's good."

Her parents, Liz and Andy, both studied at the University of Leicester and visited students earlier this month to share the letter and to see the impact their daughter's advice has on healthcare professionals.

"It was incredibly important to Lexi to have her words reach as many people in healthcare as possible," Liz said.

"She started this because she wanted to use her voice to make a difference and having spent so long in hospital she knew exactly what she was talking about."

"I think she would have felt immensely proud. Lexi wanted to have a career in healthcare and we like to think that in this way, she is."

Andy said it was "wonderful to hear the impact it has when people watch it".

University of Leicester nursing lecturer Stephen Caldwell, said sharing Lexi's letter to students was something he "really wanted to be involved with".

"At times it can be difficult working in a busy ward area that you forget to take the time to explain what you're doing," he said.

"I want to instil this into our nursing students so they can take this into practice as they become the future NHS nurses."

First year student Chinwendu Amadi, 19, said she took away key details from the letter.

"It was very emotional to hear about Lexi's Letter – not something that I'll ever forget - because we could visually see the family's pain," she said.

"I've learned a lot from Lexi's story and the advice she put together and I'll definitely carry that on into my next placement and hopefully the rest of my career."

Fellow student Michelle Idigbogu said: "The patient has to be at the heart of everything and how you connect with them is really important – Lexi's Letter is an amazing reminder of how to do that."

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