Abstract
As the Founder of Esme’s Umbrella – the charity dedicated to raising awareness of Charles Bonnet Syndrome (CBS), creating ways to support people who develop the condition and sourcing funding for much-needed research – I have spoken to hundreds of people for whom CBS has become a part of their lives. The words I hear over and over again are ‘Why wasn’t I warned that this might happen?’
When my mother – the Esme of Esme’s Umbrella – developed CBS, she found that she was sharing her fragile, glaucoma-narrowed world with faceless people who sat on her sofa, a child in Edwardian costume, hideous gargoyle-like creatures and, sometimes, the whole room or garden morphed into an alien place.
Assuming – incorrectly – that this was due to a mental illness, she confided in no one until the condition became impossibly distressing. Having ruled out dementia, my online research revealed CBS. My first question to my mother’s ophthalmologist was, also, why did he not warn us? This particular doctor told me that CBS was not a subject he ever discussed – although he refused to give me a reason for his decision.
This was 25 years ago. Since then, the work of Professor Dominic ffytche, Professor Mariya Moosajee, Dr Lee Jones and others has given us a much greater understanding of the condition. We are aware that isolation, stress, fever and some medications exacerbate CBS.
Distraction techniques have proved extremely useful for some people. Keeping the brain active but the mind quiet is the ultimate goal to limit the number of CBS episodes, but each person’s experience of CBS is entirely different.
Professor Andrew Dick and Dr August Colenbrander helped me to ensure that CBS was given a code in ICD 11 – published in 2018. 1 This means that CBS is now recognised as a condition in its own right, and its effect on the patient needs to be taken as seriously as the sight loss from which it develops.
Professor Dominic ffytche’s research has proved that if a warning is given before the first hallucination appears, the outcome for the patient is so much better. 2 If the first vivid, silent, visual hallucination can be recognised by the patient for what it is and not considered a herald of a mental health condition – unpleasant though the image might be – the patient’s ability to cope begins from a stronger position.
An erroneous self-diagnosis of a mental health condition is hard to shift, even when the correct information is ascertained. A doubt can linger, particularly if family and friends come late to the diagnosis.
Since launching Esme’s Umbrella in 2015, I have encouraged ophthalmologists to talk to their patients – both children and adults – about CBS, to explain the condition before it develops and reassure them that this is a strange, sometimes distressing but entirely normal part of sight loss. The publication of this Special Collection is a valuable addition to CBS research, deepening understanding and improving support for those affected. 3
Too often, I hear that the words ‘visual hallucinations reported’ or ‘Charles Bonnet Syndrome’ have appeared in the patient’s notes, but the condition itself has never actually been discussed with the patient in clinic.
I appeal to all ophthalmologists, optometrists and orthoptists to offer their patients that vital explanation of CBS before it develops. Reassurance that there is support available; that CBS is incredibly common; that medication can be given if the hallucinations are unbearable; and that research is happening, all go a long way to normalise something which Charles Bonnet himself described as ‘the theatre of the mind’.
