Campaign Founder JUDITH POTTS shares how and why Esme’s Umbrella was created. The campaign is named in tribute to her mother – Esme.
“I do wish these people would get off my sofa”. With these words my Mother broke her year-long silence about her ‘visions’ – as she called them. “They go if I tap them on their shoulders”, she continued while I tried to reassure her there was no one there – all the time considering the possibility that this was the beginning of dementia.
On my way home, I picked up the newspapers and, with a startling piece of luck, read a short paragraph about something called The Charles Bonnet Syndrome. Immediately I knew this was what my Mother had developed. Her eyesight had been deteriorating for some time, since glaucoma had been missed by her optometrist.
Picking up the telephone, I gave her the news and promised to investigate further – but that was not going to prove very easy. Her GP had never heard of the condition (and neither had mine), her ophthalmologist refused to speak to me – or her – and there we were in an hallucinatory limbo.
I read all I could on the internet, helped her devise some coping mechanisms and went with her to challenge her ophthalmologist at her next appointment. Curiously, he did not appear but sent his junior colleague – who was without any knowledge of the condition. Or so he said.
The hallucinations began to take over her whole life – from gargoyle-like creatures to a Victorian street-child or whole scenes – and, after she died I was determined to do something to raise awareness of this condition within the medical profession and the general public.
No one should have to suffer in frightened silence – which is why Esme’s Umbrella was born.
The Help and Information Service are giving practical help to Esme managing their calls and enquiries through their 24/7 365 UK based call centre as well as providing free telephone access to experts in law insurance and healthcare treatments where needed to support those living with CBS or their carers.
Dr Dominic ffytche is the clinical adviser to Esme’s Umbrella
Dr ffytche is an academic old age psychiatrist with a special interest in visual perception and its dysfunction. He is a Clinical Senior Lecturer at the Institute of Psychiatry, Psychology and Neuroscience, King's College London and Consultant at the Maudsley Hospital, where he runs a specialist clinic for visual perceptual disorders. He has published extensively on clinical and neuroscientific aspects of visual hallucinations and is an international expert on Charles Bonnet Syndrome. He is a Principle Investigator on the NIHR-funded SHAPED programme (Study of Hallucinations in Parkinson's disease, Eye disease and Dementia).