A little known condition that affects people with sight loss was the focus of an article in the Disabled Living magazine for May. Called Charles Bonnet Syndrome, after the scientist who first documented it, the condition causes vivid visual hallucinations in those who have sight loss. The condition is worth being aware of if you work with anyone who has sight loss, as it is very little known, and often mis-diagnosed as a mental health issue.
The whole article is copied here, with thanks to Disabled Living – contact details for the helpline and website are at the end.
When eye-sight fails, so does confidence and its place can be taken by feelings of isolation, fear and loneliness. The world becomes a difficult place to negotiate and simple, everyday tasks require re-learning.
Adjusting to a sight-skewed or sightless world is bad enough, but there may be something else lurking which makes the quality of life suffer a further downturn. It is estimated that there are 1 million people of all ages in the UK who have lost more than 60% of sight and have developed vivid, silent, visual hallucinations. This condition is named after the man who documented it – Charles Bonnet Syndrome (CBS).
Too few ophthalmologists warn their patients that CBS might develop. It might not, but if frogs flow from the tap, a weary second-world war pilot appears in the room or flowering plants grow from the shelves, it helps a little to have been made aware of the condition.
Judith Fielding, a former actress and freelance health writer explains why she launched Esme’s Umbrella, a charity named after her mother in 2015.
My mother, Esme, was in her early nineties and living a totally independent life – despite her diminishing eyesight due to glaucoma – until she confided in me about the faceless people sitting on her sofa, the Edwardian tear-stained street-child who followed her everywhere and the grotesque gargoyle-like creature which hopped from table to chair. Her ability to complete the Telegraph cryptic crossword every day proved her sanity, but – as I could think of no other reason for these ‘visions’, as she called them – the word ‘dementia’ rose between us.
Before I had a chance to contact the GP – who, we later discovered, had never heard of CBS – I read a small paragraph in a newspaper which described an experience that mirrored Esme’s and was caused by loss of sight. With the condition’s name to hand, I called her ophthalmologist. Unfortunately, he refused to discuss CBS with me, nor explain why he had never issued a warning.
Neither her GP nor her optometrist was aware of the condition and it was not until I consulted the internet and found Dr Dominic ffytche at King’s College London that I understood why the hallucinations appeared.
Dr ffytche is the sole, globally-acknowledged expert in CBS, having been the first person to research the condition. He explained that when sight diminishes, the messages from the retina to the visual cortex slow or stop, but the brain does not. It fires up and creates its own images which appear as everything from patterns, words, musical notes and maps to animals, birds, snakes, rodents, buildings, vehicles, trees, plants, grass, water, fire or people (real or Lilliputian-sized) alone or in groups and often in costume. Sometimes, the whole room changes into an alien place. Esme found herself in the middle of an Edwardian funeral procession and I have heard of medieval, candle-lit cathedrals, fast-flowing rivers and walls with countless doors. It is not unlike Alice in Wonderland but is not a mental health condition.
However, there are too many people in the UK who are living with CBS and fearing that the silent, visual hallucinations herald some form of mental health issue, they confide in no one.
As too few GPs and hospital doctors are aware of CBS, it is entirely possible for mis-diagnosis to occur and then patients who do describe their experiences, find themselves ushered down the mental health route – sometimes, particularly for the elderly, on a one-way ticket.
This is an appalling waste of medication and NHS time, not to mention the distress caused to the patient. There are no consultants in the condition and no specific, proven medication to alleviate the hallucinations, although drugs for other conditions can be prescribed, but these have serious side-effects and are not necessarily appropriate.
I launched Esme’s Umbrella in 2015, in memory of my mother, to raise awareness of the condition and with Dr ffytche as my medical adviser. Since then, I have received some funding for research and work is being done at Newcastle University by my researcher – in conjunction with Dr ffytche – to identify the difference in the brain of a person with sight loss and CBS and someone with sight loss who does not develop the condition. The result could be a non-medication, non-invasive treatment which is currently being researched for all types of visual hallucinations at the same university.
Until a successful treatment – or preferably a cure – can be found, all we can offer is support and reassurance. Not everyone develops unpleasant hallucinations but even if the images are benign, it is the irritating frequency that affects every-day life. Some elderly people find they are unable to tolerate the perceived writhing worms and slugs on food and in drink, so they stop eating and drinking with tragic results. Others, with multiple hallucinations, become house-bound because they can no longer distinguish between what is real and what is not.
A few, who are distressed or embarrassed by what they see, contemplate suicide. Children and young people find their school-days or careers constantly interrupted.
I hosted the world’s first CBS Patient Day at Moorfields’ Eye Hospital in central London last year to coincide with CBS Awareness Day (16th November). The event was a great success and it was decided to focus on two aims. The first is to lobby for a tick-box to be added to the CVI form, which has to be completed by the ophthalmologist to register the patient as blind. The tick box will confirm that the doctor has informed the patient about CBS. The second is to lobby the NHS for specialist CBS Nurses, to whom doctors of all specialities can refer their patients.
There are Esme Room Support Groups springing up in local low vision charities and eye clinics in the UK, at which people with CBS, their families and friends can meet over a cup of tea to find that all-important reassurance. If you know someone with low or no vision who is experiencing silent, visual hallucinations, please reassure them that it might be CBS and point them towards my website, www.charlesbonnetsyndrome.uk which carries a full explanation of CBS, Dr ffytche’s research, coping strategies and experiences I have collected from people living with the condition. There is also a printable explanatory sheet which can be shown to the GP or Care Home staff. I have a Helpline, which is answered for me by the Eye Health Team at the RNIB – 020 7391 3299 – and an email address – firstname.lastname@example.org
It was over two hundred years ago, in 1760, that Charles Bonnet documented the experience of his grandfather but, shockingly, no research was undertaken – and no real interest in CBS shown by ophthalmologists or optometrists – until Dr ffytche began his work in the 1990’s.
The condition has been too easily dismissed as a ‘just a side effect of sight loss’ and ophthalmologists have not understood the implications of the condition on quality of life. The research in the UK is the only work being done in the world so it seems only right that we should call on the NHS to spear-head a campaign to raise awareness and create a proper pathway for diagnosis, treatment and support.
CBS stayed with Esme for the rest of her life, causing great distress to her and the family. She would be amazed that her name has become synonymous with CBS in the UK, but I know that she would encourage everyone in the sight loss community to add their voices to ensure that vital research is undertaken and that the one million people in the UK with CBS – plus the hundreds of millions all over the world – find the support that was lacking for her and a cure for this disturbing condition.
To donate for research please visit: www.justgiving.com/fundraising/esmesumbrella
Judith Potts Founder of Esme’s Umbrella
For the Esme’s Umbrella website visit https://www.charlesbonnetsyndrome.uk/