In every aspect of our work to build Cambridge Children’s Hospital, the voices of children, young people and their families are at the forefront. Afterall they are the experts - and this is their hospital.
Listening to their stories is an important way for us to really understand what different healthcare journeys have been like, not just for the young patients but for their families, too. This collection of stories reminds us of the importance of exceptional care, where the ‘whole child’ and ‘whole family’ approach is so important. Their words paint a picture. Thank you to everyone who has shared their story with us.
Patient story
Tristan's story
When you have a rare disease, like thirteen-year-old Tristan, research plays a hugely important role in that journey, from initial diagnosis through to supporting every stage of your life.
Read more (opens in a new tab)ResearchFor those waiting for a diagnosis, knowing there is a strong focus on research will provide hope that one day someone will find an answer to explain why and how.
Celia, Tristan's mum
Patient story
Max and Parker's story
Katherine and Siobhan met in hospital when their boys were being treated for similar conditions. They became friends, finding support and comfort in their shared experiences, something that continued once Max and Parker were able to go home.
Read the story (opens in a new tab)Closer to homeIf technology could be used to reduce impact on families, so they could have more care at home, if they prefer, that could be a really good thing.
Katherine, Max's mum
Patient story
Jasmine's story
A knee injury after falling from a trampoline caused Jasmine to develop a complex psychological condition called Conversion Disorder
Read Jasmine's story (opens in a new tab)
Patient story
Crown's story
Having a physical condition can have a big impact on how you feel psychologically, and vice versa. Crown from Luton describes the huge weight on her shoulders and how mental health support would have made a difference.
More here (opens in a new tab)Integrated careI thought I just had to deal with it. Most people thought I was fine, because I smiled a lot. But I wasn’t fine. I needed reassurance. I needed someone who understood me.
Crown
Patient story
Reuben’s Story
Whole Genome Sequencing is a vital avenue of exploration for families of children with undiagnosed and complex conditions.
Reuben's story: A journey (opens in a new tab)ResearchIt’s difficult to explain the feeling those undiagnosed families go through. To get an answer is such a relief.
Nathan, Reuben's dad
Patient story
Oliver’s Story
Cambridge Children's Hospital will support the child who is poorly, but also the whole family. That's because being in hospital affects everyone.
Oliver's story (opens in a new tab)Mental healthI would have liked to talk to someone I could be honest with, about home, school, feelings, rather than worrying my mum. Being in hospital and seeing and hearing what Oliver was going through was very scary.
Macie, Oliver's sister
Patient story
Phoebe’s Story
At the age of two, Phoebe caught a common cold. But as her symptoms worsened to the point where she couldn’t stand up, it became clear this was anything but common. The cold virus had triggered a rare inflammatory response in Phoebe’s body.
Phoebe's story (opens in a new tab)
Patient story
Sarah’s Story
Sarah, 19, has multiple complex disabilities and has been in and out of hospital since she was born. As a member of Cambridge Children's Young Adult Forum, Sarah has written about her experiences, including losing her sight in 2021.
Sarah's story (opens in a new tab)
Patient story
Liam’s story
As a teenager Liam struggled with complex mental health challenges. He believes a children's hospital dedicated to treating mental and physical health will help reduce stigma for young people. (Story contains reference to suicidal thoughts and self harm).
Liam's story (opens in a new tab)Integrated careGoing into a hospital that isn’t a mental health hospital, but one that just treats you as a person, might reduce stigma.
Liam
Patient story
Alisha’s story
Born at Addenbrooke's Hospital at just 24 weeks, Alisha, now 18, has overcome multiple hurdles to get where she is today. Her passion for the Cambridge Children's Hospital project is her way of giving back to those who saved her life.
Alisha’s story (opens in a new tab)
Patient story
Alex’s story
When 9-year-old Alex bumped his head, his physical health declined rapidly. It took months for his condition to be linked to his mental health. He was treated at The Croft, a patient unit for children with mental health conditions and their families.
Alex’s story (opens in a new tab)
Patient story
Anita’s story
Anita Grant joined Cambridge Children's Network in memory of her daughter Jess, who died of a rare cancer when she was 15. Jess felt passionately that a dedicated children's hospital for the east of England was desperately needed.
Anita’s story (opens in a new tab)Hospital experienceWe missed being comfortable and having structure to our days. There was so much waiting around. Just waiting for things to happen.
Anita, Jess's mum
Patient story
Max’s story
Max was born with paralysed vocal cords which restricted his breathing and required a tracheostomy. At 14 months old tracheostomy was removed. A small part of his rib cage used in reconstructive surgery, allowed him to breathe, swallow and communicate.
Max’s story (opens in a new tab)
Patient story
Summer’s story
Drawing on her experience as an inpatient at The Phoenix, a specialist eating disorders unit near Cambridge, 24-year-old Summer has become a passionate advocate for Cambridge Children’s vision of integrated care. (Contains references to eating disorders)
Summer’s story (opens in a new tab)Designing a hospital
Project milestones
