A woman from Ealing has had a Parliamentary event take place in Westminster to recognise the seven year anniversary of her charity Esme’s Umbrella.
The charity, founded by Judith Potts, is dedicated to raising awareness about and supporting those with Charles Bonnet Syndrome (CBS).
The condition is often linked eye conditions such as age-related macular degeneration or cataracts and those who get it see hallucinations after losing much of their sight.
The event for Judith Potts, was hosted by Ealing Central and Acton MP Dr Rupa Huq and was attended by other MPs, medical professionals, and others impacted by CBS. Judith founded Esme’s Umbrella in honour of her mother who developed the condition.
Dr Huq said: “Massive respect to my constituent Judith Potts who has single-handedly run Esme’s umbrella which has now graduated from a campaigning group to a fully fledged campaign for her tirelessness. It’s a huge landmark that she’s had it recognised by the World Health Organisation as a condition in its own right known as ICD 11.”
Since 2015, Ms Potts has been involved with the Charles Bonnet Syndrome community.
She said: “Charles Bonnet Syndrome (CBS) is an incredibly common condition, experienced by at least 1 million people in the UK, which includes babies, children and adults. It causes vivid, silent, visual hallucinations which range from disturbing to terrifying.”
Ms Potts added that her own mother was initially misdiagnosed with Glaucoma and feared that her visions were a result of mental illness. “Misdiagnosis – as a mental illness – is very common because too few GPs and hospital doctors have heard of the condition. Raising awareness to healthcare professionals is as important as raising awareness out into the general public. Esme’s Friends’ support groups are run by local, low vision charities – like London Vision – and are a lifeline to people living in a world of uninvited images.”
Awareness about the syndrome increased when actor Richard Hawley’s character on Coronation Street, Johnny Connor, developed CBS because of optic neuritis from his MS. Ms Potts revealed that his portrayal of someone with the condition led to thousands calling the foundation’s hotline. Richard Hawley is now patron of Esme’s Umbrella and recently made a video for the seven-year anniversary of Esme’s Umbrella. He asked people to donate to the cause so that “people like Johnny can find the reassurance, information and support that they need.”
Ms Potts is calling for more support and help from the NHS regarding CBS. “The NHS has a duty of care to the CBS community and should create a pathway for diagnosis and treatment.”
For more information about Esme’s Umbrella and Charles Bonnet Syndrome, click here