Better diagnosis for Charles Bonnet Syndrome
The day began with an energising and well-attended parliamentary drop-in hosted by Esme’s Umbrella and Shockat Adam (MP), the UK’s leading charity raising awareness of Charles Bonnet Syndrome (CBS). Many MPs joined the session to learn more about the condition and to sign a cross-party letter calling for a dedicated NHS diagnostic and treatment pathway.
Judith Potts | Esme’s Umbrella Founder
Prof Mariya Moosajee | Esme’s Umbrella Trustee
CBS affects at least a million children and adults in the UK who experience vivid, silent visual hallucinations as a result of sight loss. Despite being a neurological condition, not a mental illness, it is frequently misunderstood, misdiagnosed, or missed entirely. Many people living with CBS remain silent for fear of being labelled as having dementia or psychiatric illness, leading to underreporting and a lack of appropriate support.
MPs heard that hallucinations can be deeply distressing and may contribute to falls, an issue recognised globally and nationally as a major public health priority. Research is urgently needed to understand the true scale of CBS, particularly the number of adults misdiagnosed in dementia units and care homes.
The letter signed by MPs calls for:
- A national, coordinated NHS approach to identifying and managing CBS
- Increased clinical awareness and training across primary and secondary care
- Clear diagnostic guidelines and referral pathways
- Public information to reduce stigma
The strong turnout reflected a growing recognition that CBS is a significant and overlooked public health issue and that coordinated action is overdue.
APPG calls for urgent improvement of children’s vision care pathways
In the afternoon, our BRC attended a meeting of the All-Party Parliamentary Group (APPG) on Eye Health and Vision Impairment. The session focused on the need to improve vision care pathways for children, an area where early intervention can profoundly shape educational, developmental, and lifelong outcomes.
Helen Khan | Communications Manager, NIHR Moorfields Biomedical Research Centre
Tendai Gwenhuri | Associate Professor and Programme Leader, UCL Institute of Ophthalmology | Senior Clinical Educator, Moorfields Eye Hospital
Experts, clinicians, parents, and sector representatives shared evidence on gaps in current services, the challenges of delayed diagnosis, and the consequences of unmet need. Importantly, CBS was included in the discussions. Parliamentarians discussed opportunities to strengthen screening, streamline referrals, and ensure that every child has equitable access to timely, high-quality eye care.
The large group of attended from across the eye health community was a testament to a shared commitment to champion better support for children and young people.
Both events demonstrated the power of collaboration between charities, clinicians, researchers, and policymakers. For our BRC, it was encouraging to see such strong parliamentary engagement with issues that align directly with our mission to provide equity through innovation.