1. To raise awareness of CBS
In 2015, Judith Potts and Professor ffytche appeared on BBC Breakfast to announce the launch of Esme’s Umbrella.
In 2019, The World Health Organisation agreed to give Charles Bonnet Syndrome its first code in its taxonomy of diseases and conditions. The code is 9D56 and it appears in ICD11. The WHO refused to remove the word ‘temporary’ in the description, but Esme’s Umbrella will persist in appealing for its removal.
In 2021, Coronation Street featured one of the regular characters – Johnny Connor (played by Richard Hawley) – who developed CBS. After the 8 episodes, Esme’s Umbrella and the RNIB were contacted by almost 2,000 people.
In 2022, CBS was also depicted in an episode of Doc Martin. The character George Upton was played by David Hayman.
Over the years since Esme’s Umbrella has been launched, Judith has written about CBS for newspapers (print and online), scientific journals and magazines of all types. She has also commissioned articles from well-respected health writers. With Nina Chesworth and the Trustees, she has taken part in broadcasts, podcasts, webinars and videos.
Judith has addressed hundreds of audiences, from sight-loss groups to the Royal College of Ophthalmologists.
2. To create ways to support people who develop CBS – and their families.
In 2016, Esme’s Umbrella joined with local low-vision charities to open Esme Room Support Groups.
In 2020, Covid 19 forced these to close, but they were replaced by Esme’s Friends. These are support groups hosted by the RNIB and local low-vision charities, held on the telephone, online, face-to-face or a mix of both. The groups allow people who live with CBS to talk to others, to exchange experiences and to share coping strategies. Fears are quietened and doubts assuaged.
Esme’s Umbrella’s website carries all the information about CBS that is currently known.
Esme’s Umbrella’s Helpline is answered by the RNIB – 0303 123 9999 – and callers can be referred to Judith Potts.
Judith’s email address – judith@charlesbonnetsyndrome.uk She answers all the emails and, if requested, is always happy to speak to someone who is in need of reassurance and an explanation of CBS.
3. To source funding for Charles Bonnet Syndrome research.
Current CBS research is happening at the following institutions:
Universities
- Nuffield Centre for Neurosciences, University of Oxford
- Cardiff
- Newcastle,
- Manchester
- Anglia Ruskin
- City (London)
- City (Birmingham)
- Aston
Hospitals
- Moorfields
- Oxford Eye Hospitals
- Great Ormond Street Children’s Hospital
Judith, with Eliza, the Cockerpoo working with The Medical Detection Dogs to discover how soon before the hallucination appears does the odour of the skin change.
2023 – Announcement from the UK’s Office for Veterans’ Affairs (Cabinet Office) that Bravo Victor has received a substantial grant to study CBS in veterans and the wider community.
Part of the mission of Esme’s Umbrella is to educate healthcare professionals. Working with Dr Penelope Stanford at Manchester University, Judith trains nurses who are taking an extra ophthalmology course. Qualifying nurses receive a certificate and a CBS badge. Wearing the badge when on duty, raises awareness of CBS and encourages people to ask for information.
Webinar hosted by The Royal Society of Medicine
“Bravo Victor working with Esme’s Umbrella and Moorfields Eye Hospital to improve understanding of visual hallucinations among military veterans and refine management strategies to ensure individuals receive an accurate diagnosis and appropriate healthcare.”
2023 – Announcement from the UK’s Office for Veterans’ Affairs (Cabinet Office) that Bravo Victor has received a substantial grant to study CBS in veterans and the wider community.
