Evidence shows that a real person’s voice can cut through. ‘Lexi’s Letter’ was written by a young patient directly to health professionals on how a patient like her wants to be treated. Six months to the day Lexi passed away a campaign to promote her letter has been launched with the support of her family. Those resources are also being shared for other health professionals. If you are an NHS comms professional you can help. Touch Design’s Kirsty McKenzie who was involved with the project has written about it.
Hearing the quiet voices: what Lexi taught us about working with young patients and families
Young patients often tell us what they need, sometimes clearly, but often quietly.
The real challenge for NHS teams is not whether children and young people have something to say, but whether our systems, processes and pressures allow us to truly hear them.
Across the NHS, teams are under increasing pressure to improve communication, emotional support and the overall experience of care for children and young people. Targets, pathways and performance measures matter, but they can easily crowd out the lived experience of the patient, particularly when that patient is young, anxious, or navigating care alongside their family.
Evidence shows that when patient experience is communicated through real stories rather than just metrics, it can drive engagement and change professional behaviour. An NHS study has reported that patient stories improve understanding of patient experience and help embed patient-centred values into everyday care.
This is where Lexi’s Letter has been so powerful.
You can watch the film here:
Learning from one authentic voice
Lexi’s Letter is not a policy document or a set of recommendations. It is a personal, honest account of care, written from a young patient’s perspective, with all the emotional clarity and vulnerability that brings. When we worked with Lexi and her family, the most important lesson was simple but profound: authentic patient voices cut through in ways that professional language never can.
Rather than interpreting experience on behalf of patients, Lexi’s words allow NHS professionals to listen directly. The tone, the pauses, the feelings behind the sentences, these are the things that are often lost in surveys, dashboards and reports, yet they are exactly what shape how care is experienced.
Working with patients and families, not just about them
A key learning from this work was the importance of involving both the patient and their family as genuine partners. Lexi’s experience did not exist in isolation; it was shared with those supporting her. Making space for that wider perspective added depth and honesty, and reminded us that for young people especially, care is almost always a shared journey.
This approach is supported by UK public health evidence. Government analysis of public health communications shows that co-producing messages with communities and patients increases trust, relevance and engagement, and that behaviour change is more likely when messages are created with people rather than for them, particularly in minority and harder-to-reach groups.
For NHS communications, this reinforces a crucial point: patient voice is not an add-on, it is a mechanism for engagement and change. This kind of collaboration requires trust, time and care. It means being prepared to listen without immediately fixing, defending or reframing. It also means accepting that what we hear may be uncomfortable, but that discomfort is often where the most meaningful improvement starts.
From story to shared reflection
Lexi’s Letter was created to help with exactly this challenge. It gives clinicians, communications teams and patient-experience colleagues a simple, emotionally resonant way to reflect on care through a real patient voice. Used in team discussions, training sessions or quality-improvement work, it creates space for empathy, reflection and honest conversation.
We know from national campaigns that patient-led narrative can drive measurable behaviour change. The #hellomynameis campaign, started by UK clinician Kate Granger, used a patient story to promote a single communication behaviour: clinicians introducing themselves to patients. The campaign achieved over 400,000 staff sign-ups across more than 90 NHS organisations, alongside over 2.5 billion impressions, demonstrating both large-scale engagement and explicit clinician commitment to behaviour change.
Lexi’s Letter works in the same way, grounding reflection and improvement in something human, specific and real.
What has been especially striking is how the letter helps teams slow down. It encourages professionals to step out of problem-solving mode and reconnect with why experience matters, not in abstract terms, but in the voice of one young person.
Encouraging others to use the resource
This is not a story to be read once and set aside. The real value of Lexi’s Letter lies in its use. The assets were created so teams can actively work with them, to prompt discussion, challenge assumptions and ground improvement work in something real and human.
It is already helping teams start powerful conversations about communication, emotional support and what “good care” really feels like from a young person’s point of view. If improving children and young people’s experience of care is on your agenda, this is a resource worth exploring, and, more importantly, using. Please get in touch.
Kirstie McKenzie is managing director of design agency Touch Design who worked on the ‘Lexi’s Letter‘ project.
