CBS can affect people of any age who have vision loss. The condition causes visual, silent hallucinations to occur as a result of sight loss.
A Sight Scotland Veterans and Esme’s Umbrella partnership is the first ‘Esme’s Friends’ CBS support group in Scotland, which is helping sufferers across the country.
Women’s Royal Army Corps veteran Marjorie Ramage (86) from Bonnyrigg has the eye condition age-related macular degeneration and was one of the first participants in the ‘Esme’s Friends’ CBS support group.
Marjorie, whose CBS results in her seeing occasional hallucinations of the same old man, had started experiencing CBS just before her sight loss diagnosis in 2013.
She said: “Sight Scotland Veterans and Esme’s Umbrella are doing wonderful work with the Esme’s Friends support group because CBS is not the sort of thing you bring up in normal conversation.
"It surprised me just how much I learned from talking to the others.
“The hallucination I sometimes see is an old man. To begin with I was worried sick as to why I kept seeing it.
“It suddenly dawned on me that he wasn’t really there. I was frightened to speak to anybody about it because I didn’t know about CBS.
“I could be sitting on a moving bus and look out and see him walking among the people. In bed one night I looked up and he was just stood there looking at me. I didn’t like that at all. But it’s never frightened me.
“When I learned about CBS it really made a difference to me to know that I wasn’t going daft. I think the first time I really spoke about it was with my Sight Scotland Veterans Rehabilitation Officer.”
Marjorie believes there should be more public awareness about CBS.
Marjorie said: “Until the Esme’s Friends sessions I didn’t realise so many others were suffering with it and how it varies for each person. Everybody sees something different. We built up quite a camaraderie in the group.
"It was nice talking to people who had found ways of dealing with it. People don’t know about CBS. I think it should be publicised an awful lot more than it is.”
Some veterans with sight loss who participated in the Esme’s Friends calls had stayed silent, worried and confused for years about their experiences, unaware of CBS and its link to sight loss.
Esme's Umbrella was launched in 2015 by Judith Potts in memory of her mother, for whom CBS plagued her final years. The Campaign raises awareness of CBS; creates ways – like the Esme's Friends service – to support people who develop the condition; and sources funding for research.
Judith said: “Since the naturalist and writer Charles Bonnet first documented the condition in his grandfather in 1760, there has been very little understanding - and too much misdiagnosing - of Charles Bonnet Syndrome. Too few doctors are warning people that CBS might develop. Consequently, far too many people are left to think - wrongly - that their vivid, silent, visual hallucinations are caused by a mental health condition.”
Sight Scotland Veterans Lead Rehabilitation Officer, Sandra Taylor, said: “Particularly during the pandemic, some individuals supported by Sight Scotland Veterans have told us that they have experienced more or changing CBS hallucinations. With CBS still such a little-known condition, raising awareness of CBS and its effects plays a vital part in overall support for sight loss.
“The Esme’s Friends group calls have successfully provided a safe, warm and understanding space for veterans with sight loss we support to share with their experiences and feelings about CBS, as well as tips for how to cope. Many had been unaware of CBS for so long, and now understand the reason for the hallucinations. They know they are not alone in living with the condition.”
For more information and support for Charles Bonnet Syndrome, please visit charlesbonnetsyndrome.uk or call the Esme’s Umbrella Helpline on 0207 391 3299. Call 0800 035 6409, email [email protected] or visit Sightscotlandveterans.org.uk to find out more about support for veterans with sight loss in Scotland.