International Youth Day: Teenager who faced life-changing brain tumour diagnosis uses experience to improve care in Cambridge Children’s Hospital

Luke, 16, from Stevenage, was diagnosed with a brain tumour in July 2020. He had two operations at Addenbrooke’s Hospital, the first lasting seven-hours, and the second involved nine hours of brain surgery, which was far more complex and invasive.

The treatments removed the majority of his tumour, but Luke still has regular scans to check there’s no regrowth. As a result of his illness and surgeries, Luke now has many additional health needs, including significant neurodevelopmental and physical challenges.

Despite ongoing care needs, Luke is throwing his efforts into helping others. As a member of Cambridge Children’s Youth Forum, he is shaping how the region’s new specialist children’s hospital will look, feel and care for patients.

Alisha, 19, (opens in a new tab) from Cambridge, got involved with the project when she was 15. She has spent a lifetime in and out of hospital after being born prematurely at 24 weeks. She said:

“It feels like us young people’s voices get dismissed a lot as “not being serious” or us being “too young” to understand the complexities of how hospital works and how it’s run. But these Cambridge Children’s Youth Forums make such a difference because I feel like senior people are actually taking us seriously and listening to our views, opinions and ideas.”

The Youth Forum (for ages 14-18) and Young Adult Forum (for ages 19-25) have so far helped shape the Cambridge Children’s Hospital’s plans, including the transition from children's to adult services, teenage spaces, the hospital school and reintegration back into mainstream school.

The team is now recruiting for a new cohort of young people to join their Youth Forums in September. Many of the current members will continue to be involved.

Elizabeth, 15, from Peterborough, has been involved in the hospital project since 2021. She added:

“As a Black British teenager it has been a great pride to include my voice and my community’s voice in the project. Everyone should have a voice and every voice should tell their story.

“This is a project for children, so I think it’s very important for children to be part of that.”

Dr Isobel Heyman MBE, Clinical co-lead for mental health for Cambridge Children’s Hospital said:

"We are so proud to be working with these young people, this model has brought enormous value to the Cambridge Children's Hospital project and their perspective ensures that children and young people are at the very heart of what we do.

“Some aspire to work in healthcare, while others have experience of being in hospital. Together, they bring a wealth of ideas and buckets of enthusiasm. Ensuring young people’s voices are heard is essential, after all, this is their hospital and we need to make sure we get it right from the start.”

Cambridge Children’s Hospital will be the first hospital designed to truly provide mental and physical health care together, delivered by staff who are trained in both.

Earlier this year, children, young people, parents and staff were invited on to the future hospital site, opposite the Rosie Maternity Hospital, to see archaeologists in action as pre-construction works got underway.

Our youth engagement work has been praised by many, including TV’s Dr Xand van Tulleken, the CBBC Operation Ouch star committed to educating children about healthcare. Dr Xand visited the Cambridge Children’s Hospital site earlier this year to meet the project team and our young people.

Dr Xand said: “Cambridge Children’s Hospital is bringing physical health, mental health and scientific research under the same roof. Maybe that sounds obvious, but that is radical. It’s hard to get people to think in that way.

The programme of pre-construction works is now complete and new access roads have been installed, where the new five-storey, 35,000 sqm hospital will be built.

The main hospital build is expected to start later in 2025.