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New UK clinical guidance for Charles Bonnet syndrome 

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Published in Eye, new UK clinical guidance has been developed to improve the identification and management of Charles Bonnet syndrome (CBS), a common but under-recognised consequence of visual impairment that causes vivid visual hallucinations in people with sight loss. The guidance brings together international evidence with real-world clinical expertise.
A clinician with a stethoscope around her neck is speaking to a patient and smiling.

The new framework is designed to support eye health professionals to recognise CBS in routine practice, open conversations with patients, and offer reassurance and practical management strategies that can make a meaningful difference to the lives of people affected by the condition.

Charles Bonnet syndrome is characterised by visual hallucinations in up to one in five people with visual impairment, and is not related to any psychiatric or cognitive disorder. The risk increases for those with more severe vision loss.

Hallucinations can range from simple shapes or patterns to complex images of people, animals or scenes. The condition can arise in association with any eye disease and is thought to result from increased excitability of the visual cortex when visual input is reduced. 

A headshot of Prof Mariya Moosajee. Mariya is wearing a patterned blazer and is smiling at the camera.
Professor Mariya Moosajee, NIHR Moorfields BRC clinician-scientist, said:
“These guidelines aim to give clinicians the confidence and tools to talk about CBS openly, reassure patients, and offer practical support. Normalising these conversations can make a huge difference to how people cope with the often debilitating and scary hallucinations. I am unbelievably proud that we now have these guidelines that we can share widely to increase not only awareness of the condition but of how to manage it across all ages from children to older adults.”

For many, just knowing that CBS is a recognised, non-psychiatric consequence of vision loss can be reassuring, with around 70% experiencing less distress once the condition is explained. However, around one third of people experience significant anxiety or fear that disrupts daily life. These individuals, sometimes described as having ‘negative-outcome CBS’, may withdraw socially and experience a reduced quality of life. Open, sensitive clinical questioning about symptoms is therefore essential to ensure people receive appropriate support and guidance.

The guidance sets out a practical, structured pathway for use in everyday ophthalmic settings. It encourages proactive, normalising conversations about hallucinations, careful assessment of symptoms and their emotional impact, and clear reassurance and education about the condition. It also highlights behavioural and environmental strategies that may help some people manage symptoms, as well as the importance of referral for psychological, psychiatric or neurological support when hallucinations remain distressing or when other concerning features are present.

The framework emphasises the importance of documentation, follow-up and appropriate referral, and aligns with national approaches to improve consistency of care and reduce unnecessary investigations.

The guidance has been welcomed by Esme’s Umbrella, the UK’s national charity dedicated to raising awareness of Charles Bonnet syndrome and supporting people living with the condition. Founded by Judith Potts in memory of her mother Esme, the charity provides information, reassurance, peer support and advocacy for people who may otherwise feel isolated or frightened by their experiences. 

A headshot of Judith Potts. Judith is wearing an orange jumper and gold necklace and is smiling at the camera.
Judith Potts, founder of Esme’s Umbrella, said:
““For too long, people with Charles Bonnet syndrome have suffered in silence, afraid to speak up because they think they might have dementia or another form of reduced mental capacity. These new clinical guidelines and growing awareness mean that people can finally be heard, believed and supported — and that truly changes lives.””

By embedding this evidence-informed and clinically practical guidance into routine eye care, clinicians can improve early recognition of CBS, reduce stigma and ensure people receive consistent, compassionate support. Alongside the work of organisations such as Esme’s Umbrella, the guidance represents an important step forward in improving care and quality of life for people living with Charles Bonnet syndrome. 

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