First UK CBS charity launched

Esme’s Umbrella was launched at Westminster this week and aims to raise awareness of Charles Bonnet Syndrome

20 Nov 2015 by Ryan O'Hare

The first UK charity to raise awareness of Charles Bonnet syndrome (CBS) was officially launched at the House of Commons this week (15 November).

The new charity, Esme’s Umbrella, was set up by Telegraph.co.uk columnist Judith Potts in order to “promote discussion, engagement and awareness, [and] to enable sufferers to manage their condition.”

Ms Potts established Esme’s Umbrella in memory of her mother, Esme, who suffered from the condition.

CBS is a neurological condition affecting blind and partially sighted people. It may often be associated with macular degeneration, in which progressive vision loss leads to the visual circuitry of the brain ‘filling in the gaps,’ often resulting in vivid hallucinations.

As part of the launch event, which was attended by the chair of the parliamentary health select committee, Sarah Wollaston MP, the fledgling charity partnered with The Help and Information Service (TH&IS), which will be making its call centre available to those seeking further information and help about the condition.

Non-executive director of TH&IS, Michael Davidson, said: “It was entirely appropriate that we should support the greater understanding and awareness of CBS and we aim to do just that.”

Mr Davidson added: “Too many organisations work in isolation, but Esme’s Umbrella will use the very best of modern communications to collectively share and promote awareness of CBS across the public and healthcare sector. We are proud to be playing our part.”

The campaign’s medical adviser is Dr Dominic Ffytche, clinical senior lecturer at the KCL Institute of Psychiatry in London, who actively carries out research into CBS.

Last year Dr Ffytche carried out research in collaboration with the Macular Society, which found that almost one-third of patients with CBS had experienced negative outcomes with the condition, including frequent, long-lasting hallucinations, and many believed the hallucinations were due to mental illness rather than CBS.

For more information on Esme’s Umbrella, visit the charity’s website.

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