Those with sight loss have been experiencing increasing or changing Charles Bonnet Syndrome hallucinations during the pandemic
A charity has had to step up its support for those with sight loss who suffer hallucinations.
A Sight Scotland Veterans and Esme’s Umbrella telephone support group is supporting veterans with sight loss in Scotland who have a little-known condition that results from vision loss and causes visual hallucinations – Charles Bonnet Syndrome (CBS).
The charity Sight Scotland Veterans linked in with CBS campaign organisation Esme’s Umbrella to offer the Esme’s Friends CBS support group to its service users via telephone after the charity's rehabilitation team noticed some veterans with sight loss told them of increased or changing CBS experiences during the pandemic.
Charles Bonnet Syndrome is a common condition that can affect people of any age who have vision loss. The condition causes visual, silent hallucinations to occur as a result of sight loss. The hallucinations vary greatly from person to person, with some people seeing images of everyday items while others might experience worrying, or even terrifying hallucinations.
This Sight Scotland Veterans and Esme’s Umbrella partnership is the first Esme’s Friends CBS support group in Scotland. Esme’s Umbrella already runs 26 telephone support groups in England, in partnership with charities , for people experiencing CBS.
Some veterans with sight loss who participated in the Esme’s Friends calls had kept silent for years about their experiences, unaware of CBS and its link to sight loss and therefore fearful the hallucinations were signs of mental illness, dementia or even paranormal hauntings.
Army veteran John Baptie, 72, of Inverness, participated in the Esme’s Friends calls. John started experiencing Charles Bonnet Syndrome in 2013. Unaware of the condition at the time, he says the first years were “hell” as he thought he was ‘losing his mind’.
John said: “I found the Esme’s Friends sessions to be a great help because you’re able to talk to people with similar experiences. I’ve not been able to talk about this before to anyone because you feel you don’t want to draw attention to yourself.
“Nobody had ever mentioned Charles Bonnet Syndrome to me before, not even at eye clinic. It really came to light with Sight Scotland Veterans’ support. I realise now these things I’m seeing aren’t real. As soon as I realised, I felt alright.
“I’ve had sight loss in my left eye for a long time, and Charles Bonnet Syndrome only started bothering me when I started losing sight in my right eye. When it started happening, I did not understand what it was. I thought I was haunted. I went through hell thinking that I had dementia and that things were going to get worse. I even paid for my funeral because I thought that was it.
“I would be sat down and see ginormous spiders coming towards me. I’d see spiders floating through the air coming towards me. I would see people dressed in black and when I approached them, I couldn’t see their faces. That made me think I was being haunted. When I was looking at something I’d swear it was moving, even though I knew it wasn’t. Even when I’d go out on a walk and I knew where I was going, I would get lost. When you don’t know what it is, you think you’re going mad.”
John says the Esme’s Friends group calls have given him a peer support network when he needs to talk about Charles Bonnet Syndrome.
He said: “It’s a great relief to know that Sight Scotland Veterans and Esme’s Umbrella have taken up the gauntlet with this. I’m very happy with my eye clinic support too. People see sight loss and blindness, but they don’t understand the complex things that can go a long with it, like Charles Bonnet Syndrome.
“By sharing my experiences it’s nice that I can maybe help others too because I don’t want them to go through what I went through. The more Charles Bonnet Syndrome is brought out into the open and more people understand what it is, the better.”
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 Potts 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: “During the pandemic, some individuals supported by Sight Scotland Veterans have told us that 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, visit the website or call the Esme’s Umbrella Helpline on 0207 391 3299. Call 0800 035 6409, email firstname.lastname@example.org or visit Sightscotlandveterans.org.uk to find out more about support for veterans with sight loss in Scotland.