Managing complex physical health conditions, with long stays in hospital, can lead to mental health struggles, something Cerys knows well. She is now throwing her support behind a “game changing” new hospital.
By the time Cerys was three years old, she had undergone three open heart surgeries. She has a condition called Hypoplastic Left Heart, where the left chamber doesn’t pump blood as it should do. Her heart has been replumbed to push blood around her body. She is “something of a miracle”, said her aunt, Sharon.
Now 16, Cerys from Potton in Bedfordshire has been reflecting on her healthcare journey and is using her knowledge for the benefit of others. She has joined Cambridge Children’s Hospital Youth Forum, helping shape how the East of England’s first specialist children’s hospital will look, feel and care. She is drawn by the vision of mental and physical health being treated together under one roof, a holistic ‘whole child’ approach that Cerys said would have helped her enormously.
In her experience, Cerys said psychological support was lacking, despite going through major surgeries. She started showing signs of anxiety when she was a toddler and later developed a fear of blood tests. “I was triggered by the sight of a person holding a needle,” she said.
Organised through her school, Cerys had six counselling sessions with a Bedford charity, but “they didn’t understand the hospital environment and what I’d been through.”
At Cambridge Children’s Hospital they will know the triggers and what kids need. Treating mental and physical health together is very important.
Cerys, 16
Cerys is now using her voice to improve healthcare for future generations of children. Every month she joins a Cambridge Children’s Youth Forum meeting with other young people. They have used their breadth of lived experience to tackle a range of subjects, including operating theatres and imaging; the integration of mental and physical healthcare; and how professionals and patients communicate with each other.
When I was young, even though I was able to understand, they would speak to my mum and dad, never to me. I would be sat there listening to what they were going to do. I had to be quiet. To not have a voice in that situation was hard.
Cerys
When she was born, it was suspected that Cerys might have hearing loss. This was confirmed by a hearing test carried out during a home visit. She was then referred to Addenbrooke’s Hospital for further investigations which showed Cerys has been deaf since birth. For six years, she wore a temporary hearing aid held in place by a band around her forehead, which had a significant psychological impact on her.
“The band was giving me headaches. It whistled like a microphone with feedback. The noise was disturbing. For as long as I can remember I could not hug anyone properly in case it was knocked.”
The wait for surgery was “mentally draining.” Finally, in December 2024, Cerys had a major operation to fit a Cochlear Osia System - an implant with small magnetic devices that is screwed into the skull. Because of her heart condition, the surgery took place at Great Ormond Street Hospital, which is a cardiac surgery specialist centre for children.
Afterwards Cerys developed extreme anxiety as she waited seven weeks for her scars to heal. She says that having her physical and mental health cared for equally might have avoided her struggling so much.
“The surgery was a long time coming. First thing that I did was hug my family! I can now wear hats. I can lie on my side. I feel more confident,” said Cerys.
Looking to the future, Cerys remains positive about life and throws herself into every opportunity, raising money and awareness for things that are important to her, including the new Cambridge Children’s Hospital.
To have a hospital with people trained to recognise anxiety and mental health problems will be game changing.
Cerys
Her family’s company C4B Media has kindly named Addenbrooke’s Charitable Trust and Cambridge Children’s Hospital as their charity of the year (opens in a new tab), recognising the huge difference that psychologically informed care will have on the outcomes for poorly children and young people, and their families.
- Cambridge Children’s Hospital will be the only hospital in the world designed to fully integrate the treatment of children’s mental and physical health, alongside world-leading research. It will be the specialist centre for over 40 different conditions. However, paediatric cardiac surgery will continue at Great Ormond Street Hospital, which is one of the UK’s specialist cardiac centres for children. As a member of the Children’s Hospital Alliance, Cambridge Children’s Hospital is working with Great Ormond Street Hospital and other UK children’s hospitals to advocate for better healthcare for children and young people.