How one teen’s letter is shaping the next generation of healthcare staff

First-year nursing students at the University of Leicester have praised the “inspiring” story and lasting legacy of Lexi Johnson as they begin their careers.

Lexi, 14, from Leicester, passed away last year from a rare immune deficiency. Whilst she was in hospital, the teenager penned a letter to healthcare practitioners looking after young people like herself to explain the best way to go about this.

Now, Lexi’s parents, Liz and Andy, are ensuring her words are heard and asking hospital trusts across the country to adopt her letter into their training policies.

Liz and Andy visited the University of Leicester last week to deliver a special ‘Lexi’s letter’ lecture to around 200 first year nurses, midwives and physiotherapy students as part of their empathic healthcare training. 

Lexi’s advice included making sure any healthcare professional explains why they are there and what their job is, ensure they address the young patient in the room and ask what they like to be called, as well as asking them how they want difficult information to be passed on.

The initiative is supported by 21 NHS Trusts in the UK as well as the Anthony Nolan Trust and Bubble Foundation, among others, and it’s hoped more will follow suit as they hear about it. 

Liz explained: “Lexi spent many months in hospital, including an isolation unit over the years so she really knew how she wanted to be treated. The doctors and nurses looking after her could make or break her day depending on how they spoke and treated her and so she really knew what she was talking about.

“She wrote the letter after one particularly frustrating day and although we had no idea just what it would become and what impact it could have, it’s wonderful to see her words making a difference now - it’s part of her legacy. 

“Lexi wanted people to see her as a person, not a symptom, not someone to be ‘dealt with’, but as a human being and having someone by your bedside that can see you for what you are, provide the empathy you need, can really make a big difference – that’s what Lexi’s Letter is all about.” 

The letter has also been made into an animation - part of which Lexi got to see before she died – and is voiced by Lexi’s younger sister, Ella. 

Francesca Curtis is studying a Mental Health and Children’s Nursing degree at the University of Leicester and sat in on the lecture.

Speaking afterwards she said: “To hear a patient’s voice like that first hand was really inspiring and powerful. It’s not something I’ll ever forget.” 

Fellow student George Meledath, who is in the first year of an Adult and Mental Health Nursing Degree said: “It’s really made me realise that you can’t just see your job as ‘just a job’, you have to have a real respect for your patient.” 

Kiera Allen, a first Year Physiotherapy student added: “It’s really made me want to select Paediatrics as a way forward. It’s hard to hear what such a young girl had to go through, but it’s such an inspiring story.” 

Since her death, Lexi has also posthumously been awarded a Gold Blue Peter badge for her determination and drive to make a difference to others. Something her parents say Lexi would have been “unbelievably proud of”.

University of Leicester Nursing lecturer, Stephen Caldwell, said: “At Leicester we believe empathic healthcare is a vital part of training, helping to ensure that communication with patients and their families is always open and allowing them to provide the best care possible with a ‘patient first’ attitude to everything they do. If we can embed this from the very beginning of their careers, we know that we’ll be providing the very best healthcare practitioners of the future.” 

University Hospitals of Leicester (UHL) Trust is among those planning to adopt Lexi’s Letter. 

Gang Xu, Medical Director at UHL, said: "As a parent and doctor, reading Lexi's letter shines a light on something that really matters, the importance that everyone is heard and involved in decisions about their care. 

“Our hospitals are really busy, and care often becomes really complicated that's why we are committed to making its principles part of how we care for all patients at UHL. We are incredibly grateful to Lexi’s family for sharing their experiences and using them to drive positive change. We want to make sure we learn from their experience and use it to make a real difference for all patients and their families at UHL.”

On Thursday 15 October Lexi's parents and the team behind Lexi's Letter are hosting a one-hour webinar for clinicians, health communicators, patient experience and engagement leads, clinical educators, allied health professionals, and anyone working to improve how the NHS listens to and communicates with young patients.

To join this free event please register here.