Working together for better care: SRHSB 2026
Reflections on the discussions from SRHSB Amsterdam 2026.
In September 2026, Shine’s CEO and members of the Health team joined researchers, clinical professionals, and experts by experience from around the world in Amsterdam for the 70th annual conference of the Society for Research into Hydrocephalus and Spina Bifida (SRHSB). The theme of the meeting was ‘Bridging disciplines’ and the 3-day event brought together professionals who share a commitment to improving the lives of people living with spina bifida and hydrocephalus.
The conference offered a valuable opportunity to connect with professionals, researchers, and advocacy organisations from around the world. There was significant interest in the work being undertaken by Shine, and the conference sparked several positive conversations about future collaboration, shared learning, and ways to strengthen support for our members.
The conference programme covered a broad range of topics, from fetal surgery and hydrocephalus to urology, rehabilitation, orthopaedics, tethered cord syndrome, and transition. However, one message stood out across many sessions: great outcomes depend on great teamwork and communication.
For Shine, this was particularly encouraging. Many of the themes discussed align closely with our priorities, including improving communication between professionals and patients, supporting multidisciplinary care, strengthening transition services, and ensuring adults with spina bifida receive proactive, lifelong support.
A recurring theme throughout the conference was the importance of listening to and learning from people with lived experience. This was particularly evident in the dedicated "Seamless Transition" session, which explored how young people move from specialist children's services into adult healthcare. The programme included presentations on transition, interviews about patients' experiences, and a panel discussion focused on "Bridging the Gap". Several speakers highlighted that successful transition happens when patients are active partners in their care rather than passive recipients of it.
Another strong message from Amsterdam was that no single professional can meet the complex needs of someone living with spina bifida. The conference programme showcased expertise from neurosurgery, urology, rehabilitation medicine, physiotherapy, psychology, nursing, social work, radiology, and patient advocacy.
The range of expertise and session topics highlighted how different specialists must work together to support the whole person, not just individual symptoms. This is an important reminder that good care is rarely delivered by single services operating separately. The most effective support comes when professionals communicate well with each other and with patients and families.
Historically, much spina bifida research and service development has focused on children. While these advances remain vital, there was growing recognition at SRHSB 2026 that people with spina bifida are living longer and fuller lives, creating an urgent need for stronger adult services.
The dedicated transition programme reflected this changing perspective, focusing on how healthcare systems can bridge the gap between paediatric and adult care. Discussions acknowledged that many adults experience challenges finding knowledgeable healthcare professionals, accessing coordinated care, and maintaining long-term health monitoring. Care should not become less organised simply because someone reaches adulthood. Services need to remain proactive, helping people prevent complications rather than responding only when problems arise or worsen.
For adults with spina bifida, proactive care can mean regular health reviews, early identification of changing symptoms, support to maintain independence, and timely access to specialist advice. The growing interest in patient registries and long-term outcome studies also demonstrates a commitment to understanding what helps people stay healthy throughout their lives.
Shine's contribution
Shine was proud to have a visible presence throughout the conference.
Lindsey Reid, Shine's Head of Health, played a key role in the conference by co-moderating the "Seamless Transition" session. This session brought together professionals, patients and advocates to explore how services can better support young people moving into adult care.
Kate Steele, our Chief Executive Officer, represented Shine on the "Bridging the Gap" discussion panel, contributing the perspective of a patient organisation and helping ensure that lived experience remained at the heart of conversations about transition.
Bronwen Warner, Shine’s Specialist Physiotherapist, presented our novel research evaluating Shine’s Stim service which offers transcutaneous spinal stimulation (tSCS) for in spina bifida neurorehabilitation. Her work reflects Shine's commitment to supporting innovative approaches that may improve outcomes and quality of life.
Image above: Bronwen Warner from Shine's Health Team presenting research from Shine's Stim service.
Jenny Smith-Wymant presented our findings on spina bifida mortality trends in England and Wales between 2001 and 2023. This research contributes to a growing understanding of the long-term health experiences of people living with spina bifida and highlights the importance of ongoing support across the lifespan.
Image above: Jenny Smith-Wymant from Shine's Health Team presented our findings on spina bifida mortality trends in England and Wales between 2001 and 2023.
Shine awarded the 2026 Dr Richard Morgan prize to Annick Viaene for her work titled ‘The impact of fecal and urological (in)continence on activities, participation, and quality of life in patients with spina bifida’ This abstract was chosen as we considered it to directly combine patient-centred research, outcome measures, and a clear pathway to improving multidisciplinary clinical care. This, along with its focus on the impact of bladder and bowel dysfunction on participation and quality of life, aligns closely with Dr Morgan's lifetime work in advancing insight, treatment, and support for people living with spina bifida.
Image above: Kate Steele, Shine's CEO, presents the 2026 Dr Richard Morgan prize to Annick Viaene.
Perhaps the most encouraging aspect of SRHSB Amsterdam 2026 was the growing consensus that healthcare works best when it is collaborative, person-centred and lifelong. For Shine members, these conversations offer reason for optimism. Around the world, professionals, researchers, patients and charities are increasingly working together to improve services and outcomes. Shine's active involvement at the conference demonstrates the valuable role that patient organisations can play in shaping research, influencing practice, and ensuring that people with spina bifida remain at the centre of every discussion.
As the conference concluded, one message remained clear: better communication, stronger teamwork and seamless support from childhood through adulthood are essential if everyone with spina bifida is to achieve the best possible quality of life.
A full summary of the conference will be added to the website shortly.