What is Charles Bonnet Syndrome?
Charles Bonnet Syndrome (CBS) develops in a child or adult who has a variable amount of sight loss. It causes vivid, silent, visual hallucinations which range from disturbing to terrifying. No other sense is involved. It is not a mental health condition, but caused entirely by loss of sight.
The eye acts as a camera and the brain interprets what is being seen but, as sight is lost, the brain is left with nothing to interpret. Instead of quietening down, it fires up and creates its own images. The images can be simple ones, like coloured blobs, musical notes or geometrical patterns, to more complex hallucinations of people, animals, plants, insects, rodents, reptiles, buildings, vehicles, fire, water or whole scenes. If images of people are seen, they are often in costume of some sort, with hats or headdresses – e.g. Edwardian, Medieval, Middle Eastern or Military.
People are usually aware that the hallucinations are not real because the images are sharp and clear, as opposed to the person’s vision. Some people have recurring hallucinations while others see different images each time. The images can occur frequently or occasionally and can be made worse by stress, isolation, fever, certain medications and other conditions. Everyone’s experience of CBS is different. The hallucinations may grow less frequent in time or may remain for many years.
Not everyone with sight loss develops CBS but, for those who do, the condition can be distressing and debilitating – not least because it may be mis-diagnosed as a mental health condition. Far too many people who develop CBS have received no warning about the condition and, consequently, are frightened to confide in anyone.
What is the information day about?
On 2nd December 2023 in Manchester, Esme's Umbrella is pleased to host an information day for all professionals, patients, carers and families affected by CBS. The current agreed speakers are as follows and the afternoon will include workshops:
Judith Potts (Founder of Esme’s Umbrella)
Dr Penelope Stanford (University of Manchester/Chair RSN Ophthalmology Forum)
Professor Fiona Rowe (University of Liverpool, Professor of Orthoptics)
Dr Lee Jones (Thomas Pocklington Fellow at Bravo Victor. Lead Scientist on CBS research)
Nina Chesworth (Projects and Campaigns Coordinator Visionary. Lived Experience of CBS)
There will also be an exhibition area where other charities and organisations will be present.
Programme:
9.00 Coffee and registration
Welcome by Judith Potts
9.30 Professor Fiona Rowe
10.00 Dr Penelope Standford
10.30 COFFEE BREAK
11.00 Dr Lee Jones
11.30 Nina Chesworth – lived experience
12.00 LUNCH
1.15 Judith Potts – update on the work of Esme’s Umbrella and introduces the screening of Aspectum’
2.00 Breakout rooms
3.15 TEA
3.45 Re-gather and hear results
4.30 Close – Judith Potts
