Charles Bonnet Syndrome – The tide is turning

Introducing Esme’s Umbrella

Back in 2019, the wonderful Judith Potts, founder of Esme’s Umbrella, put together a blog introducing us to the organisation. Esme’s Umbrella supports people with Charles Bonnet Syndrome (CBS) and raises awareness of the condition.

In the blog, Judith outlined some of the ground-breaking research that Esme’s Umbrella was doing. This work was vital in giving the CBS the recognition it needed. This was a huge step to ensuring that patients with CBS receive the support and understanding they need.

Fast-forward five years, and Esme’s Umbrella is going from strength to strength. Its 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, people knew very little about Charles Bonnet Syndrome (CBS). Far too few people talked about their vivid, silent, visual hallucinations, for fear of a mental health diagnosis. 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 and 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 Charles Bonnet Syndrome.

Too often, if a patient arrives after an an hallucination causes an accident (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. A supporter sponsored this, so 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. This was a fitting place for two brilliant students.

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 government’s lawyers are examining the new Certificate Of Vision Impairment (CVI) form. On top of that, for the first time, included on the form is a box which an ophthalmologist or Eye Clinic Liaison Officer will have to tick to say that they have discussed CBS 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. The amount of sight lost will differ from person to person.

A study by Professor Mariya Moosajee and Dr Lee Jones confirmed exacerbation of CBS through isolation, stress and fever during the COVID-19 lockdown . 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.