Teenager’s powerful words help train Leicester’s next generation of doctors and nurses

A teenager who spent months receiving hospital care has written a letter which is being used to shape the next generation of doctors and nurses in Leicester and beyond.

Lexi Johnson from the city, was born with a rare immune deficiency. 

At 12 years old she was approved for a stem cell transplant, offering her hope of a non-medicalised life and long-term health. 

Lexi received intensive and dedicated treatment away from home, living in isolation in hospital supported by her parents Liz and Andy, who took it in turns to be her full-time carers. Sadly, she died in 2025, aged 14, from complications arising from the transplant.

After one particularly long and difficult day of treatment, Lexi created a list of helpful tips she wanted to pass onto medical staff dealing with young people in hospital so that they could communicate better with young patients like her and offer the best support.

Now those words are being used by teaching staff at the University of Leicester, including the Stoneygate Centre of Empathic Healthcare, to pass on vital skills needed for student doctors, nurses, midwives and other health professionals. 

Known as Lexi’s Letter it includes simple yet effective advice including:

• Making sure any healthcare professional explains why they are there and what their job is

• Ensuring they address the young patient in the room

• Asking what the patient likes to be called

• Asking how they want to be given difficult information if there is any

Lexi’s Letter has also been made into a short animation, voiced by her younger sister, Ella.

The letter has already been adopted by several hospital trusts throughout the country, including Newcastle Hospitals NHS Foundation Trust, where Lexi received some of her treatment. Not only that but Lexi’s Letter has also reached Tasmania and Canada, and been shared at an international conference in Spain, championed by the stem cell charity Anthony Nolan.

University of Leicester Nursing lecturer, Stephen Caldwell, said: “When I was sent the information about Lexi’s Letter it was something I really wanted to be involved with. Being a relatively new member of staff, and coming from a Paediatric Specialist Nurse point of view, I was acutely aware of the importance in not just communicating with the family but actually speaking with the child. It not only empowers them to be involved in their own care but it allows them to make decisions on how that care is given. 

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

Lexi’s parents, Liz and Andy, both University of Leicester alumni, visited Nursing students on Wednesday (13 May) to share the story of how Lexi’s Letter was written and see for themselves the impact Lexi’s advice has on healthcare professionals.

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

“It means everything to us to continue her work, spread Lexi’s words as far as possible and leave a lasting legacy for her. 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.”

Lexi died on 3 September 2025. She didn’t get to see the whole animation completely finished, but she saw the first half. The day before she died, she watched it quietly and said: “That’s good.” 

Andy added: “I’m so grateful for Lexi’s Letter. It gives us a way to share her views and experiences with people and it’s wonderful to hear the impact it has when people watch it.” 

First year Nursing student Chinwendu Amadi, 19, was among those hearing about the letter on Wednesday.

She said: “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. 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 added: “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.” 

Find out more about Lexi’s Letter here. Please use #LexisLetter on social media and help Lexi’s voice be heard.