After her mother was diagnosed with Charles Bonnet syndrome, Judith Potts set up the charity Esme’s Umbrella to raise awareness for the condition. To mark the first ever awareness day this month, NB Online spoke to Judith.
Ten years ago, my mother Esme was in her early nineties but living a totally independent life. Despite her failing eyesight due to late diagnosed glaucoma, she completed The Telegraph cryptic crossword every day, baked her ever-popular chocolate brownies and enjoyed her social life.
Her confidence was beginning to wane but I assumed it must be the aging process – at least, that was until the day when I was leaving her flat and she suddenly said “I do wish these people would get off my sofa. They go if I tap them on their shoulders”.
She and I were the only people in the room. She went on to describe a gargoyle-like creature which hopped from table to chair, a tear-stained Victorian child who followed her everywhere and of times when the whole room morphed into somewhere completely different.
Apart from her ‘visions’ as she called them, she seemed fine but the word ‘dementia’ was hanging in the air.
With an astonishing piece of luck, that very day I read a tiny paragraph in a newspaper about a condition called Charles Bonnet Syndrome (CBS) which could have been written by Esme. I learned the vivid, silent, visual hallucinations were being caused by her loss of sight.
I turned for help to her ophthalmologist who infuriatingly refused to discuss CBS or explain why he never warned us that this might happen. When neither the GP nor the optometrist had heard of the condition, I was left to consult the internet. There I found Dr Dominic ffytche of King’s London - the sole, globally-acknowledged expert in CBS.
From speaking to Dominic, it was evident that Esme was not alone in experiencing CBS, but that many others were not daring to confide in their GP, family or friends, fearing the hallucinations were due to dementia or some other mental health issue.
Far too many healthcare professionals are still unaware of CBS. What happens as a result is people are misdiagnosed and they find themselves being ushered down the mental health pathway – some on a one-way ticket.
Dominic told me that no support or specific medication were available but gave me the eye exercises he had created to help dispel the hallucinations. Between us, we invented more tactics to ‘shunt the brain into another gear’.
But relief was only momentary and the hallucinations accompanied Esme’s every waking hour until the end of her life.
After Esme died, I resolved to launch an awareness campaign in memory of her lonely struggle with CBS.
On 16 November 2015, Esme’s Umbrella was born. Since then, with the support of many sight loss charities, eye clinic liaison officers (ECLOs), rehabilitation officers for the visually impaired (ROVIs) and sensory teams, the campaign has made huge strides in raising awareness.
Of course, ophthalmologists have always known about CBS, but no one had ever illustrated graphically to them just how the hallucinations impact so negatively on a person’s life. Using evidence from calls to the Esme's Umbrella Helpline, I have been able to do exactly that and show how adding CBS to sight loss means quality of life takes a further downturn.
While some people see benign images like patterns, flowers or cavorting kittens, others are plagued by grotesque faces, fire or sinister figures.
Not only does eating and drinking become a challenge when food is perceived to be covered in writhing worms and slugs floating in drink, but being unable to distinguish what is real and what is not makes leaving the house too frightening. Instinctively moving to avoid the sudden appearance of a brick wall, a tiger or a black hole leads to falls and isolation and depression can hound people’s lives.
The first big step of the campaign was taken on my behalf by The Help and Information Service, who look after my website and answer my Helpline 24 hours a day, every day of the year.
An explanatory video was commissioned, its medical accuracy confirmed by Dominic, and produced by the NHS Film Unit together with Health and Care Videos. Now I just need to find some funding to ensure that every NHS eye clinic has a copy!
Furthermore, the Association of British Dispensing Opticians and Royal College of Ophthalmologists have both given me their support and will encourage members to warn patients that CBS might develop. It does not happen to everyone with sight loss but forewarned is forearmed. Should a giant rat run across the floor, a Second World War soldier appear, or the room morph into a fast-flowing river, it helps a little to know it is probably CBS.
In November , on the first ever Charles Bonnet Awareness Day, I announced that Dr Greg Elder at Newcastle University would be investigating the reason why some people with sight loss do not develop CBS. His colleague Dr John-Paul Taylor, also at Newcastle University, will continue his work on CBS in association with Dr Dominic ffytche. Another strand of research will be conducted by Dr Renata Gomes at Blind Veterans.
Working with healthcare professionals, I want to establish a proper pathway for diagnosis and support. The first steps were taken last week when Dominic and I joined the first-ever patient forum on CBS, hosted by South East London Vision, followed by a meeting with senior ophthalmologists from Moorfields which resulted in their offer to host the first patient study day next year.
CBS can affect anyone of any age who has lost some of their sight. There could be as many as three-quarters of a million cases of this serious, but common, side-effect of sight loss. In the 257 years since Charles Bonnet identified the condition, I wonder how many frightened people have lived silently in their worlds of disturbing or terrifying hallucinations. Esme was one of them.