A team of UCL researchers (Ania Zylbersztejn, Pia Hardelid, Joachim Tan) met GOSH YPAG twice (25/01/25, 27/09/25) and GenerationR Liverpool YPAG once (21/05/25). 15 to 18 participants in total helped to develop and co-produce guidance on data linkage for research.

The guide is available through the BRC website:

https://www.gosh.nhs.uk/our-research/our-research-infrastructure/nihr-great-ormond-street-hospital-brc/brc-news/when-it-is-ok-to-link-our-data/

Imogen Smith is a young person with lived experience of childhood cancer. Imogen has written a detailed analysis of the long‑term impacts of childhood cancer, offering valuable insight into education, health, and support needs from a survivor’s perspective. Read the insightful report here.

In April 2026, the PROMISE team partnered with Leaders Unlocked to hold the first of two workshops with seven young people (aged 16-23) exploring access to mental health support through an intersectional lens. The 90-minute online session, structured around three discussions, examined barriers and enablers to support, the effectiveness of and gaps in current provision, and what better support might look like in practice.

Young people described how multiple, overlapping factors shape whether they can reach support: geography and transport (particularly for those in rural areas), cultural and family attitudes that frame mental health as shameful or "attention-seeking," and a recurring pattern of academic achievement masking need, with several participants describing how doing well at school led professionals and schools to underestimate the seriousness of what they were experiencing. This was felt particularly by neurodivergent young people.

Participants were clear that even when support is accessed, long waiting times, daunting first appointments, and a tendency among some professionals to attribute distress to a single cause (e.g. bullying, a disability) rather than treating conditions in their own right reduce its effectiveness. Networks of care through informal and peer support, by contrast, were valued for being less clinical, more immediate, and grounded in shared experience, though they currently sit outside the formal pathway. Solutions young people prioritised included interim support while on waiting lists, multiple access routes beyond GPs, peer and group-based options, transparent conversations about confidentiality at the start of therapeutic relationships, and, consistently, being listened to rather than educated.