The difference early screening makes: Brooke's Cystic Fibrosis story
Brooke Bishop is now nearly 18 years old. In 2007 she was one of the first 3 babies born at University Hospitals Plymouth NHS Trust to be diagnosed with Cystic Fibrosis through the newborn heel prick screening programme. It was a milestone that reflected decades of national campaigning, clinical advocacy and progress in CF care. Now, Brooke is preparing to transition from paediatric to adult services. Her experience highlights the life-changing impact diagnosis can have and the critical role staff play across the whole pathway.
As a baby Brooke required daily nebulised therapy to help keep her airway clear, this was essential for maintaining her respiratory health. As treatments evolved, and her condition stabilised, her regimen has become less intensive. Today, she maintains good lung function and has avoided hospital admissions in recent years.
Routine newborn screening for CF is a relatively recent achievement. As recently as the mid-1990s, most babies in the UK were not tested. “Years ago, children could become very poorly before diagnosis, we’re just thankful we’ve known from the start what we were dealing with” says Donna, Brookes mum.
A national campaign led by the Cystic Fibrosis Trust from 1996 pushed for change, clinicians knew that early diagnosis and intervention could prevent malnutrition and reduce severe chest infections. It also reduced the physical and psychological pain experienced by children and families while seeking a diagnosis. Nationwide screening was introduced and fully rolled out across the UK by 2007.
This change meant Brooke has known she has Cystic Fibrosis for as long as she can remember. “My mum always talked to me about it, but it’s when I was in the last year of primary school that I understood more” she says. From her diagnosis as a baby, she has been under the care of the Paediatric Cystic Fibrosis Team at UHP receiving treatments and therapies. Now as she progresses to adult care, Brooke is saying goodbye to the team that’s been with her from the start. This is a gradual, structured process focused on building independence, it’s a daunting move, but an important one.
She is increasingly taking responsibility for her medications, recognising symptoms and communicating directly with her care team. “She knows if she doesn’t take her tablets, she could be poorly” says mum, Donna. “I’m proud of how she’s come through everything, that she’s taking more control of her Cystic Fibrosis and becoming more independent.”
The transition also brings about emotional considerations. “I am worried about hospital stays” Brooke admits, “I’m used to my mum being there with me”. This demonstrates the importance of preparing patients not just clinically, but psychologically for the challenges ahead of them
Caroline Whitton is a Cystic Fibrosis Nurse Consultant at UHP , she told us, ‘Welcoming people with CF to the adult service is always an exciting time, but the significance of this years transition highlights just how far CF care has come. The adults and paediatric teams work incredibly closely, especially through the transition process, and we never underestimate the impact for our people with CF who are leaving a team who have been with them since birth’
For Brooke, the future means college and using her social media platform to advocate for Cystic Fibrosis awareness. Her advice to young people in a similar position is simple: “Don't google everything! Go to the Cystic Fibrosis Trust and trust your clinical team.”
