Sarah Perides, Advanced Nurse Practitioner, Complex Motor Disorder Service, Evelina Children’s Hospital, London
For over 15 years, I have had the privilege of working as an Advanced Nurse Practitioner within the Complex Motor Disorder Service at Evelina Children’s Hospital in London, caring for children and young people living with dystonia and movement disorders. Our service focuses on assessing and supporting young people who may benefit from surgical interventions such as Deep Brain Stimulation (DBS) and Intrathecal Baclofen (ITB) therapy — interventions that have changed the lives of hundreds of patients.
A Journey from Assessment to Long-Term Support
In my role within the Complex Motor Disorder Service, I am involved throughout the entire patient journey. From the initial selection and assessment processes, supporting young people through surgery and discharge, and I continue to see patients and their families regularly in follow-up DBS and ITB clinics. Additionally, I play a key role in supporting young people as they transition to adult DBS services. My core responsibilities include patient education and support, medication management, comprehensive patient assessment, and the programming and management of DBS and ITB devices.
With nearly 300 DBS patients and around 70 ITB patients implanted through our service, the positive impact of these therapies is profound. In a field where meaningful improvement is often difficult to achieve, seeing children, young people and their familes experience a better quality of life never ceases to inspire me.
Why I Love This Work
After 15 years, my passion for this role remains strong. I am lucky to work alongside a dedicated team of professionals who share a common goal: delivering the best care possible for our patients. Additionally the advances in DBS technology offer new hope every year, with groundbreaking developments expanding possibilities for treatment.
But the true heart of this job is the children and their families. They are remarkable individuals—brave, resilient, and inspiring. Supporting them motivates me daily to continually improve and learn.
Supporting the Wider DBS Community
Beyond my clinical role, I am proud to serve on the national committee of the UK Deep Brain Stimulation Nurse Association (DBSNA). Since its formation 11 years ago, DBSNA has focused on supporting nurses managing DBS patients and improving lives through education and collaboration.
As an original member of the committee, I advocated for the needs of paediatric DBS patients, ensuring their voices were heard in a field historically dominated by adult-focused care. I now work closely with the only otherUK paediatric DBS nurse, Gina Lumsdon at Alder Hey Children’s Hospital, we work closely together to ensure paediatric movement disorders is firmly on the agenda. One of the biggest achievements this has led to is educating and collaborating with DBS adult services to ensure smooth transition from paediatric care into adult base care.
Tips for Children, Young People, and Families Navigating Dystonia
- Be proactive: Dystonia is often under-recognized or misdiagnosed. If you suspect dystonia, speak openly with your paediatrician or neurologist, and don’t hesitate to seek a second opinion at a specialist centre.
- Connect with support networks: Families facing similar challenges can offer invaluable emotional and practical support. Charities and groups are a great resource too.
- Set realistic goals: Whether considering medication or advanced therapies, understanding and agreeing on personalised treatment goals is essential to measure success and avoid disappointment.
- Understand your diagnosis: Dystonia is classified into different categories, and knowing the specific type helps guide treatment decisions and expected outcomes. Understanding this can help manage your expectations and choices.
Looking Forward
As technology advances and our understanding of movement disorders deepens, the future holds exciting possibilities for children and young people living with dystonia. It is a privilege to be part of this evolving journey and to work alongside such motivated health professionals and these inspiring children and their families every day.
