Charles Bonnet Syndrome – The tide is turning

Introducing Esme’s Umbrella

Back in 2019, the wonderful Judith Potts, founder of Esme’s Umbrella, an organisation supporting people with, and raising awareness of, Charles Bonnet Syndrome (CBS), put together a blog introducing us to the organisation, and outlined some of the ground-breaking research and campaigning it was doing, to give CBS the vital recognition it needed so that patients with the condition could be understood and given the correct support.

Fast-forward five years on, and Esme’s Umbrella is going from strength to strength, ramping up its work to support those with, and raise awareness of, CBS.

Read on as Judith gives us an update.

2015 to now

When I founded Esme’s Umbrella in 2015, it was at a time when very little was known about Charles Bonnet Syndrome (CBS). Far too few people talked about their vivid, silent, visual hallucinations – for fear of a mental health diagnosis – and ophthalmologists were reluctant to warn their patients that CBS might develop.

Now, the climate is very different. Fewer people keep quiet about the images which dog their days and many more ophthalmologists or optometrists are raising the subject. We know that if CBS is discussed before it develops, the outcome is so much better.

When the first hallucination appears, it will be recognised for what it is and there will be less worry that it is heralding a mental health crisis.

Awareness and inclusion

It is essential that doctors from all specialties are aware of CBS.

Too often, if a patient arrives after an accident caused by an hallucination (tigers often appear as someone crosses the road) – even if the person explains about CBS – many GPs and hospital doctors are unaware and bring in the psychiatric service. This is a huge waste of precious NHS resources and infinitely more distressing for the patient.

In order to begin to educate the doctors of the future, last year Esme’s Umbrella ran an Essay Competition. Sponsored by a supporter, we were able to offer a small financial prize. Fifty-three entries arrived and the two winners – Victoria Ngai and Anushka Irodi – received their awards at the Royal Society of Medicine, which was a fitting place for two brilliant students. The CBS Essay Prize will run again this year.

Lobbying government agencies and the large sight loss charities to include CBS in all low vision work has met with some success. At this moment, the new Certificate of Vision Impairment (CVI) form is being examined by the Government’s lawyers and, for the first time, included on the form is a box which will have to be ticked by an ophthalmologist or Eye Clinic Liaison Officer to say that CBS has been discussed with the patient. So long as the legal eyes are happy, this will make all the difference to a sight loss diagnosis.

RNIB’s new Adult Eye Care Support Pathway acknowledges the importance of talking to the patient about Charles Bonnet Syndrome as part of living with sight loss. These two steps forward are hugely important for the CBS community.

New understanding and information

We are learning more about CBS all the time.

Initially, it was considered that over 60% of sight had to be lost before CBS developed. Now, we understand that everyone’s experience of CBS is different, which means that the amount of sight lost will differ from person to person.

Exacerbation of CBS through isolation, stress and fever was confirmed during the COVID-19 lockdown from a study by Professor Mariya Moosajee and Dr Lee Jones. It became obvious very quickly that people who live with CBS were having a particularly difficult time with multiple CBS episodes daily and images which were much more frightening than usual.

We also know that there are ‘culprit’ medications which have the same effect. Proton Pump Inhibitors (like Omeprazole), Urinary Incontinence Medication (like Oxybutynin), Tricyclic Antidepressants (like Amitriptyline), Synthetic Opiates (like Tramadol) and Anticholinergics (like anti-allergy medication) are on the list. Some of these can be substituted for other drugs but it is imperative that the medication should only be stopped when the GP has given an alternative.