We received a response from the Royal College of Ophthalmologists!

Remember Sam Heaton’s letter to the Royal College of Ophthalmologists asking that they routinely inform people about Charles Bonnet Syndrome? We received this reply:

Hi @DUnitedUK, and thanks for your letter, CBS is an important issue. Please see a feature page sent to all members in Spring College News.

Image description: A section of a page from a newsletter. The top section has a light grey background and reads: Charles Bonnet Syndrome (CBS) is a condition of patients with visual loss associated with complex visual hallucinations (VHs) in the absence of psychiatric disease. CBS was first described by Swiss physician Charles Bonnet in 1760. The prevalence of CBS has been reported to be between 10% and 40% and may be related to increasing age and the severity of the visual impairment. The incidence is thought to be higher as a result of patient’s fear to report the symptoms, as they could be labelled psychiatrically unwell. VHs can also be found in a variety of psychiatric and neurological disorders such as drug or alcohol abuse (delirium tremens), Alice in Wonderland syndrome (AIWS), psychosis, schizophrenia, dementia, narcolepsy, epilepsy, Parkinson disease, brain tumors, Epstein-Barr virus infection, migraine, as well as, in long term sleep deprivation.

The hallucinations often consist of well-defined, organized, and clear images over which the subject has little control and are commonly images of people, animals or inanimate objects. They are often repetitive or stereotyped, elementary or complex, involving human figures in most cases. The images are often smaller than in real life so called “Lilliputian hallucinations”. The hallucinations are only visual and if related to other types of sensory hallucination such as hearing and smell, an alternative diagnosis should be looked for. It is believed that CBS represent release phenomena of the visual association areas of the cerebral cortex, leading to a form of phantom vision due to chronic under-stimulation from the optic pathway. Cognitive defects, social isolation, and sensory deprivation have also been implicated in the aetiology but the evidence is currently not conclusive.

Patients who suffer from CBS usually posses insight into the unreality of their experiences, which are commonly pleasant but may sometimes cause distress. Many authors advise reassurance, considering the condition benign. The mainstay of treatment is pro-active recognition by the clinicians and support team to warn patients that they may experience CBS when they have advanced visual impairment; and then subsequent reassurance if CBS occurs. Sensitive and sympathetic history taking is essential. There are support networks from charities available for patients with CBS, such as provided by the RNIB and the Macular Society. Esme’s Umbrella is a charity specifically catering for CBS. This can often be a great source of reassurance if sufferers can connect with fellow patients with CBS to discuss their symptoms.

Paul Orsell, Consultant Ophthalmologist

The lower section has a white background and a large Esme’s Umbrella logo [white umbrella with a black outline and multi-coloured dots). Text reads: “A view about CBS from Rea Mattocks, Lay Group member

Everyone working in the field of ophthalmology will be all too aware of Charles Bonnet Syndrome, but having attended a launch of a new charity, Esme’s Umbrella, I quickly realised that there are still gaps of knowledge about this condition.

I think it is important to recognise that more information [rest of paragraph is missing]

The charity Esme’s Umbrella, was set up by Judith Potts, a health columnist for the Telegraph, because her mother, Esme, suffered from Charles Bonnet Syndrome and her last few years were extremely difficult, as she was misdiagnosed with dementia. The medical advisor for Esme’s Umbrella is Dominic ffytche, Consultant Psychiatrist and expert in visual hallucinations.

Included in the aims of the charity is raising the awareness and understanding of CBS among medical practitioners and feed information into the NIHR “Towards an Evidence-based Clinical Management of Visual Hallucinations: Prevalence, Prognosis, Impact and Pathophysiology” programme so that guidelines for professionals, patients and carers on the clinical management of visual hallucinations can be produced by 2018.”

[The next paragraph is not readable].

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