Letter to the Royal College of Ophthalmologists re CBS Awareness

Remember Sam Heaton’s article about a lack of awareness of Charles Bonnet Syndrome? We decided to take action! Here’s our letter asking members of the Royal College of Ophthalmologists to routinely discuss CBS with patients.

To the members of the Royal College of Ophthalmologists

Re: Charles Bonnet Syndrome and the need for advanced awareness

I am writing this letter on behalf of the many thousands of people who, in the coming years, will experience symptoms of Charles Bonnet Syndrome (CBS). I would like to ask that information on CBS be routinely passed to all Ophthalmology patients experiencing high levels of sight loss or being registered for a Certificate of Visual Impairment (CVI).

As you will be aware, the prevalence of CBS amongst patients with particular eye conditions is of a significant number. The Macula Society identify 50% of people with Macular Degeneration as having CBS. In addition, a study by the researcher R.Nesher (2011) found evidence of CBS in 12.9% of patients who were defined as having low vision as a result of Glaucoma. Meanwhile, according to an Australian study led by O’Hare (2015), over a third of the participants with the condition Retinitis Pigmentosa showed signs of Charles Bonnet Syndrome.

Despite these statistics, awareness of CBS amongst Health and Social Care professionals remains patchy, with knowledge of the condition within the general population low. The charity Esme’s Umbrella has highlighted how this knowledge gap is leading too many being misdiagnosed, meaning people are denied the right support.

A lack of CBS awareness has also been evidenced as making people reticent in speaking to clinicians about their symptoms for fear of receiving a mental health diagnosis. This lack of openness means many will suffer in silence and will prevent the true figures on CBS prevalence being known. It is common place for ophthalmologists to discuss possible additional physical conditions linked to a particular vision impairment – this I know from my own experience – yet for some reason the same does not apply to psychological or psychiatric elements.

I myself have had a CBS diagnosis. Luckily, thanks to previously seeing the issue discussed in an online forum, I understood the reason behind my symptoms when they first started to occur. Yet a large proportion of visual loss occurs in older people, who are less likely to be online and able to access this information and support.

I therefore wish to urge all members to incorporate into their regular practice the provision of information on Charles Bonnet Syndrome where possible in advance of CBS symptoms, in order to offer precautionary awareness and help remove the barriers to a positive diagnosis.

Yours faithfully

Mrs Samantha Heaton

Disability United

We look forward to their response.

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