RNIB warns that the ongoing lockdown and coronavirus restrictions could be causing a spike in hallucinations due to sight loss.
Hallucinations due to sight loss are known as Charles Bonnet Syndrome (CBS), which is caused when the brain attempts to fill in gaps in visual information with invented images or patterns. The hallucinations vary from person to person and range from simple lights or patterns to complex images. They are often distressing.
The condition has sparked interest from Britain’s longest running television soap Coronation Street, with a storyline showing Weatherfield resident Johnny Connor, played by actor Richard Hawley, beginning to hallucinate cockroaches, cats and people. Although his symptoms are caused by sight loss, they are initially misidentified as a psychiatric issue.
Although there is little research into the condition, it is widely believed that at least a third of all people with significant sight loss experience these symptoms, but it is often under-reported.
Over the last 12 months, the number of people calling RNIB’s Sight Loss Advice Service to report CBS has increased – with sharp peaks in calls corresponding with coronavirus restrictions. In January 2021, the number of calls about hallucinations increased by more than two-thirds (67 per cent) compared to January 2020, and accounted for more calls than any other condition.
Thelma Good, aged 70, from Biggar in South Lanarkshire, has experienced CBS for years after losing a large proportion of her sight due to glaucoma and cataracts. She said: “I studied psychology at university, and we learned about CBS in my course. Because of this, although it would be years until I was officially diagnosed with the syndrome, I was able to understand why I was having hallucinations: I knew that it was related to my sight.
“One of the scary aspects for me is that when I cross the road my brain fills in the gaps in my vision with a clear road, which means that I can’t see approaching cars or cyclists. That can be really challenging and frightening, so it takes me a long time to cross roads.”
Dr Louise Gow, specialist lead for eye health at RNIB, said: “The increase in calls and emails we have received about CBS since lockdown has been dramatic. The visions that are being reported are much more vivid than usual, which has left many people feeling particularly distressed – describing their hallucinations as ‘out of control’.
“It’s as though the stress and anxiety of coronavirus, and the resulting restrictions, has had an impact on people’s symptoms. Although there is currently no research to confirm such a link, it would seem stress and lack of stimulation can increase symptoms.”
To help people with the condition, RNIB has launched a new Talk and Support service specifically for people experiencing CBS, created with CBS specialists Esme’s Umbrella.
Judith Potts, founder of Esme’s Umbrella, said: "We launched Esme’s Friends, a telephone chat service, which has now joined RNIB's Talk and Support Groups. The calls provide peer-support and new contacts, all of whom understand what it is like to live in a world of vivid, silent, visual hallucinations. The calls can be joined by carers and family members who are too often forgotten, but who also need support. Through Esme's Friends, people living with CBS find they are part of a community which is developing its own voice."
Dr Louise Gow added: “It is very worrying that awareness of CBS remains low, even among healthcare professionals. We have heard of several instances where GPs have mistakenly referred patients to mental health services, rather than directing them to information about how to cope with CBS and ensuring that they see an eye health professional. If this happens, it is possible that the underlying vision issue causing the CBS is not treated and could worsen, resulting in further avoidable sight loss.
“While there is still a lot to learn about the condition, it’s more important than ever that health and care professionals are made aware of CBS. There is a range of support and advice available to help people living with the condition. But patients must first be diagnosed appropriately.”
Professor Mariya Moosajee, consultant ophthalmologist at Moorfields Eye Hospital, said: “We are working hard to better understand CBS and how it can be managed. This includes a study to learn how common CBS is in children across the UK. We are hoping to start a study into deciphering the overall time period affected by visual hallucinations, as this will help us to provide a more accurate prognosis for patients to guide them on how long to expect them to occur. We would welcome further research on CBS to increase our understanding and would also encourage clinicians to ask their patients about CBS symptoms regularly.”
* Anyone with sight loss who is experiencing visions or hallucinations – or any sudden change in their sight – should seek immediate help from an eye health professional or contact RNIB’s Helpline on 0303 123 9999. For more information, visit www.rnib.org.uk.