Charity warns of increase in hallucinations due to sight loss

The Royal National Institute of Blind People (RNIB) is warning that ongoing lockdown and coronavirus restrictions could be causing a spike in hallucinations due to sight loss.

These hallucinations, known as Charles Bonnet Syndrome (CBS), are caused when the brain attempts to fill in gaps in visual information with invented images or patterns. The visions vary from person to person and range from simple lights or patterns to complex images. They are often distressing.

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. Last month, 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, including common complaints such as cataracts and age-related macular degeneration.

Although there is little research into the condition, it is widely believed that at least third of all people with significant sight loss experience these symptoms – meaning that it could affect more than 100,000 people, but it is often under-reported.

Dr Louise Gow, Specialist Lead for Eye Health at RNIB, said: “The increase in calls and emails we have received about CBS during lockdowns has been dramatic. And 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.

“With the rise in calls we are seeing, it is very worrying that awareness of CBS remains low, even among health and care 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.”

The rise in the condition has even sparked interest from Britain’s longest running soap, Coronation Street. A new storyline shows Weatherfield resident Johnny Connor begin to hallucinate cockroaches, cats and people. Although his symptoms are caused by sight loss, they are initially misidentified as a psychiatric issue.

Nina Chesworth is 38 and lives in Manchester. She has been visually impaired since she was two years old, but didn’t experience CBS until she had surgery on her left eye. She said: “I could see waves and clouds of colour very vividly. I was convinced the surgery had improved my sight, but the doctor explained that it was my mind showing me these visions, rather than my eye.

“After I left the hospital, the hallucinations intensified, and the colours I could see became shapes. The hallucinations seem to be affected by my mood, as sometimes the shapes become abstract faces or angry dogs which can be disturbing if I’m stressed, tired or feeling isolated. When I’m feeling happy the shapes look like bubbles, unicorns and rainbow spirals.

“Since lockdown the hallucinations have become more intense, and sometimes they are there from the moment I wake up. They can detract from my other senses which I use to get around, which means that sometimes I walk into things and I’ve even fallen down the stairs.”

In response to the issue, RNIB has launched a Talk and Support service specifically for people experiencing CBS. Created with CBS specialists Esme’s Umbrella, the service sees small groups of blind and partially sighted people regularly meet by phone or online for peer support.

Judith Potts, founder of Esme’s Umbrella said: “During the lockdown period and since, it is clear that the need for support for people who live with CBS is all the more important, and so we launched Esme’s Friends, a telephone chat service, which has now joined RNIB's Talk and Support Groups.

“Not having to travel means that the service is accessible for many more people than an in-person group. 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: “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.”

The recent rise in cases has also spurred interest in research about CBS. Current studies are being conducted by Moorfields Eye Hospital and also Oxford University.

Professor Mariya Moosajee, consultant ophthalmologist at Moorfields Eye Hospital, said: “At Moorfields 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 the 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.”