“Say that again”

“After every appointment it starts again: her mum, my mum, work, friends. You end up reliving the same appointment four or five times before the day is over.” — A Young Lives vs Cancer parent 

We hear this from families all the time. 

We know that a cancer diagnosis brings a huge amount of information, at exactly the moment families are least able to take it in. Research suggests that 40–80% of what’s said in a medical appointment is forgotten almost straight away. We also know what happens next: parents and young people become the messengers. They retell every update to the other parent, grandparents, school and friends, often while still trying to make sense of it themselves. 

Our specialist social workers see the toll this takes. Families leave appointments unsure of what was decided, with questions they forgot to ask. “I can’t even remember what you told me yesterday,” one parent told us, “and now you’re presenting me with a 10-page form to sign off on life-changing surgery.” One young person described feeling “an emotional burden and a duty” to keep everyone updated. 

When cancer shows up, so do we. That’s why we’re partnering with Ditto, an app built for patients and families rather than for clinicians. Imagine having the world’s best, most accurate note taker in the appointment with you. 

With Ditto, families can: 

• Prepare their questions before an appointment, so nothing gets lost in the moment. 

• Record the conversation on their own phone and focus on what’s being said. 

• Get a clear, jargon-free summary of what was said, what was decided and what happens next. 

• Choose who sees what and how much. 

As one young person put it: “There are people I want to tell everything, and people who just need to know I’m okay.” 

Ditto doesn’t diagnose or give medical advice. Families own their data, and nothing is shared with the hospital or with us unless they choose to share it. We’ve taken the time to look carefully at Ditto’s technology and how it protects families’ privacy, so we can recommend it with confidence 

This is the first innovation partnership for the Young Lives Innovation Lab. We’re working with the Children’s Cancer and Leukaemia Group (CCLG), to bring clinicians with us, and our social workers will be introducing Ditto to the families they support. We are partnering with Ditto in two regions across the UK. This is a phased roll-out, with our social work teams showing the app to the families they support.  This is so that we can get feedback from users, to give us more insight and make improvements to help families navigate a cancer journey.