Briefly, could you tell us about your background and career up to this point?
I’m a children’s nurse by background and have always really enjoyed working with children and families. After my PhD, I became increasingly interested in how we can use research to improve the experiences and outcomes of children and their families. My postdoctoral fellowship was with the London CF Collaboration, and that really sparked my interest in newborn screening. I love genetics and genomics, and cystic fibrosis is a great example of how identifying an inherited condition early can change the pathway for a child and their family. That made me really interested in both the opportunities and the challenges that come with newborn screening. I’m also passionate about making sure children and young people have a voice and are involved in decisions that affect them.
You recently completed a project on building a Young Person’s Advisory Group across King’s Health Partners; what did the project involve, and what did you find?
We worked with children and young people with a range of health conditions to explore how we could develop a Young Person’s Advisory Group to inform what research is important to them and how it should be conducted. We wanted to understand what children and young people would want from an advisory group, what would make them want to get involved, and importantly, what would make that involvement meaningful for them. One of the key things that came through was that young people really do want to contribute, but they want to know that their contribution is going to make a difference. It’s not enough to simply ask for their opinions; we need to close the feedback loop and show them how their ideas have influenced what we do.
Do King’s Health Partners have any plans to implement your recommendations?
We’re currently in the process of writing up the findings so that we can share them across King’s Health Partners and use them to attract funding to establish the Young Person’s Advisory Group. Our ambition is that this becomes something sustainable across King’s Health Partners, rather than children and young people being involved on a project-by-project basis. We want to create a structure where children and young people have an ongoing voice and can help shape research across the partnership.
You are also part of a national Oxford-led study on newborn screening for SMA. With England rolling out SMA screening for all babies by 2027, how will your work shape how families receive these results, and why does this research matter right now?
I’ve been involved in a number of newborn screening projects, including more recently, leading the in-service evaluation of newborn screening for severe combined immunodeficiency; being involved in the SMA study feels like a natural progression of that work. I am particularly interested in how we make screening pathways work for babies and their families. Early identification of conditions via newborn screening can make such a difference to outcomes for the affected child, but receiving a positive screening result for a condition that parents may never have heard of can be difficult, particularly when their baby may look completely well. This work will help us to understand how families experience SMA newborn screening and what they need when they receive a positive newborn screening result for SMA, including how information is communicated and how we support families through what can be a potentially uncertain time.
Looking ahead, what do you hope the future of newborn screening for SMA looks like over the next five years?
I think the next five years will be really important in understanding what the implementation of SMA newborn screening looks like in practice. I don’t think it’s my role to comment on whether SMA should be included in the national screening programme; I think those decisions need to be informed by the perspectives of those affected (e.g. families and clinicians). But if it is adopted, I would like to see it implemented with the best interests of babies and families at the forefront of decision-making. For me, that means making sure that families receive clear and timely information, that results are communicated sensitively, and that there is appropriate support available when families are given potentially life-changing information about their baby. I’d also hope that we continue to listen to families and learn from their experiences as the programme develops. Screening isn’t just about the test itself; it’s about the whole pathway that follows it. It would be good to see the evidence and experiences of families continuing to shape how the programme evolves.
How does your research influence your teaching?
I think my research influences my teaching because it helps to encourage students to be curious and ask questions. This includes asking why things are done in a particular way, looking at the evidence and being willing to question whether there might be a better way of doing things. I think that’s an important mindset for students to develop. I don’t want students to feel that they just have to learn a set of facts; I want them to feel confident to ask questions, challenge what they hear and think critically about the evidence. My own research also gives me lots of real-world examples to bring into teaching, so students can see how research actually translates into practice and, importantly, how much there is still to learn.
What is your favourite thing about working at King’s?
There’s such a strong combination of clinical knowledge, research and education at King’s, and I really enjoy working in an environment where those things come together. I value the collaborative culture. You can be working on something that crosses different disciplines, and there are people around you with completely different expertise who are willing to share ideas and work together. It makes it a really supportive environment. I enjoy working with the students, who bring fresh perspectives and challenge the way we think.
What do you do with your time outside of work?
Outside of work, I spend as much time as I can with my children; they’re definitely my greatest achievement. I also have a horse, which is a wonderful way of switching off from work. Being outside and looking after him gives me a completely different headspace from research and academia. I think having that balance is really important. My work is a big part of who I am, but my family and the things I enjoy outside work are what keep me grounded.
Quick fire:
Favourite book? I’m probably a crime thriller person. I love anything that keeps me guessing, is a bit scary and makes me not want to put the book down!
Your ultimate London spot? Honestly, I’m much more of an outdoor person! If I have a choice between London or the beach or even a field, I’ll take the latter every time.
Best piece of advice you’ve ever received? Treat others how you would want to be treated. It’s simple, but I think it’s a good principle to live and work by. It applies whether you’re working with colleagues, students, patients, families or children and young people; everyone deserves to feel listened to, respected and valued.