Treatable But Not Curable Patient Passport Design

To support South Tyneside and Sunderland NHS Foundation Trust in co‑developing a Treatable but Not Curable (TbnC) Patient Passport, ensuring it was shaped by lived experience and provided clear, accessible information to individuals at the point of diagnosis.

Why This Matters

Receiving a TbnC diagnosis can be overwhelming. Patients need information that is compassionate, meaningful, and easy to understand—reflecting the real questions and concerns people have at this stage. Co‑designing this passport with lived experience ensures it supports emotional wellbeing, empowers patients, and improves communication between services and those affected.

What we did

We worked alongside the Trust to support the development of the passport.

Participated in two dedicated co‑design workshops, actively championing the voices of patients, families, and diverse communities.

Highlighted the importance of exploring the needs of the wider community, including groups who are often underrepresented.

Advised on who else should be involved in shaping the passport and what different communities might need from it.

Ensured discussions remained focused on lived experience, everyday realities, and the importance of clear, supportive information at diagnosis.

Outcomes

What we achieved!

The passport was co‑developed with strong lived‑experience input, helping ensure it is practical, empathetic, and accessible. The Trust gained a clearer understanding of wider community needs and who else should be engaged in future development. Patient voice was embedded early in the design process – not added at the end -strengthening the quality and relevance of the final document. This work has laid the foundation for future improvement and expansion of supportive resources for people with a TbnC diagno