Charles Bonnet Syndrome event at Parliament celebrates advances in knowledge and research
On 16 November – Charles Bonnet Syndrome Awareness Day – an event focusing on the condition took place at the Palace of Westminster. It was hosted by Rupa Huq MP and organised by the charity Esme’s Umbrella, which provides information about Charles Bonnet Syndrome and encourages research into the condition. The event was supported by the NIHR Moorfields BRC.
Charles Bonnet Syndrome (CBS) is the name given to the visual hallucinations experienced by 50-60% of people who live with significant sight loss. These hallucinations may be harmless, but can also be disturbing or deeply distressing. They occur when the brain no longer receives meaningful information from the eyes, and instead creates its own vivid, silent, visual hallucinations. They are not the result of a mental health condition or dementia. You can read more about the condition below.
Esme’s Umbrella was set up in 2015 by Judith Potts, whose mother, Esme, suffered from acute CBS that initially went undiagnosed. Judith began to learn more about the condition with the help of the world expert on CBS, Dominic ffytche, Professor of Visual Psychiatry at King’s College London. Judith realised that a lack of knowledge about the condition was leading to widespread misunderstanding, often leaving those with CBS misdiagnosed and living in fear. Despite there being an estimated 1 million people in the UK living with CBS (47 million people globally), healthcare professionals are often unaware of the condition and its debilitating effects. This lack of knowledge inspired Judith to launch Esme’s Umbrella with the aim of raising awareness about the condition, providing support for those with CBS and their carers, and lobbying for more research into its causes and possible therapies.
“When I launched Esme's Umbrella seven years ago, Charles Bonnet Syndrome was an under-acknowledged and little-researched condition. Now, it is spoken about freely and with understanding. This change was reflected in the event hosted by Dr Rupa Huq MP at the Palace of Westminster on Charles Bonnet Syndrome Awareness Day. The support from everyone attending was overwhelming and I am hugely grateful. Now for the next seven years!”
Judith Potts, Founder of Esme’s Umbrella
The work of Esme’s Umbrella
Since its launch, Esme’s Umbrella has steadily grown its work with the support of charity partners, researchers and health professionals. Working initially with the charity Fight for Sight, Judith began to campaign for more research into CBS. An early victory was persuading the World Health Organisation to recognise CBS as a condition in its own right in ICD 11*. Esme’s Umbrella also began to organise patient information days, where those living with CBS could share experiences and coping strategies.
* International Classification of Diseases, 11th Revision: https://icd.who.int/en
When Covid-19 and lockdowns began, the support groups moved to the phone and online. They have continued to grow, with over 30 groups now active. One group is led by Nina Chesworth, a holistic therapist based who has become totally blind and experiences CBS constantly. Nina has developed breathing and mindfulness techniques to cope with the condition, which she explored recently at the Bloomsbury Festival, with the support of the NIHR Moorfields BRC.
The Latest CBS research
In the first placebo-controlled clinical trial of a CBS treatment, researchers at Newcastle University have shown that CBS hallucinations can be reduced by the use of non-invasive electrical brain stimulation, which makes visual parts of brain less excitable. The research, supported by the Macular Society and others, needs more investment to develop it into something that could be used by the NHS and in people’s homes.
Other research by Prof. Maryia Moosajee and Dr Lee Jones has shown that isolation and stress exacerbate CBS. They are now studying the impact of CBS on children.
Another exciting possibility is the use of medical detection dogs to predict episodes of CBS, which is now being investigated by Medical Detection Dogs. The charity attended the event along with ‘Eliza’, a cockapoo who is being trained to detect CBS by sensing changes in the odour of skin of someone about to experience hallucinations.
CBS studies, many of them funded by sight loss charities, have been undertaken and continue at institutions across the UK, including at the Universities of Cardiff, Manchester and Oxford, City (University of London) and Anglia Ruskin University.
Charles Bonnet Syndrome on television
With growing media interest in CBS, the condition has featured in recent episodes of two popular TV shows: Coronation Street and Doc Martin, resulting in much news coverage and public interest. A storyline in Coronation Street featured the actor Richard Hawley, who plays Johnny Connor. Richard is now a Patron of Esme’s Umbrella and was present at Parliament along with Dr Scurr, medical advisor for Doc Martin.
In all, the evening was attended by around 60 people from a wide range of backgrounds. These included people living with CBS, politicians, clinicians, academics, figures from the media, trustees and supporters of Esme’s Umbrella, their guests and many others. You can see a list of many of the attendees below.
Attendees
Judith Potts (Founder of Esme’s Umbrella)
Rupa Huq (MP for Ealing Central and Acton)
Prof. Mariya Moosajee (Esme’s Umbrella Trustee and CBS researcher)
Helen Khan (Esme’s Umbrella Trustee)
Lord Blunkett (Former Labour MP and Cabinet Minister)
Sir John Whittingdale MP
Rosie Duffield MP
Janet Daby MP
Howell James (former broadcaster, communications executive and government adviser)
Lord Hill (Conservative politician and former European Commissioner)
Keith Valentine (Chief Executive, Fight for Sight) – recorded message
Richard Hawley (Patron of Esme’s Umbrella and Coronation Street actor)
Nina Chesworth (Special Friend to Esme’s Umbrella)
Prof. Rupert Bourne (Consultant Ophthalmic Surgeon, Cambridge University Hospitals)
Phil Ambler (England Country Director, RNIB)
Joanne Ardern (CEO, The Sheffield Royal Society for the Blind and Rotherham Sight & Sound)
Jane Peach (Marketing Manager, The Sheffield Royal Society for the Blind and Rotherham Sight & Sound)
Tracy Atkinson (Sight Support Hull and East Yorkshire)
Dr Joann Cheung (GP in London)
Dr Neil Crowley (GP in London)
Charlotte Carson (Director, Look UK)
Brigadier Andy Cash (COO, Bravo Victor)
Roger Cole (Connect Radio, RNIB – lives with CBS)
Charles Colquhoun (CEO, Thomas Pocklington Trust)
Olivier Denève (Head of Policy and Public Affairs, College of Optometrists)
Denise Voon (Clinical Adviser, College of Optometrists)
Kathy Evans (Chief Exectuive, Royal College of Ophthalmologists)
Tina Garvey (Chief Executive, Retina UK)
Bhavini Makwana (Chair, BAME Vision)
Prof. José Gonzalez-Martin (Paediatric Ophthalmologist, Alder Hey Children’s Hospital, Liverpool)
Dr Louise Gow (RNIB)
Prof. Shahina Pardhan (Director, Vision and Eye Research Institute, Anglia Ruskin University)
Russell Peake (Optometrist and Head of Contact Lenses, Specsavers)
Helen Perkins (Worshipful Company of Spectacle Makers)
Prof. Fiona Rowe (Professor of Orthoptics, University of Liverpool)
Dr Martin Scurr (ex-GP and TV industry medical adviser)
Dr Penelope Stanford (Chair of the Royal College of Nursing Ophthalmic forum; Senior Lecturer in adult nursing at the University of Manchester)
Liz Tomlin (British and Irish Orthoptic Society; Head Orthoptist and Eye Team Lead, Guy’s and St Thomas’ Hospital)
Mike Burdon (Consultant Ophthalmologist, University Hospitals Birmingham; Ex-President, Royal College of Ophthalmologists)
Dr Aadil Kazi (Manager, NIHR Moorfields Biomedical Research Centre)
Aleksandra Jones (Editor, The Ophthalmologist)
Gus Alexiou (Diversity and Inclusion Journalist, Huffington Post and Forbes Magazine)
Gemma Butlin (Medical Detection Dogs), with ‘Thor’
Dr Jasleen Kaur Jolly (CBS researcher, Anglia Ruskin University and Oxford Neuroscience, University of Oxford)
Dr Tamsin Callaghan (CBS Researcher, Crabb Lab at City, University of London)
Dr Matt Dunn (CBS researcher, School of Optometry and Vision Sciences, Cardiff University)
Gayle Barrow (CBS researcher, Medical Detection Dogs) with research dog ‘Eliza’
Dr Bethany Higgins (CBS researcher, Crabb Lab at City, University of London)
Katharine Fisher (CBS researcher and PhD student, University of Manchester)
Dr Emma Stanmore (CBS researcher, University of Manchester)
Prof. Robin Walker (CBS researcher, Royal Holloway, University of London)
Prof. Holly Bridge (CBS researcher, Nuffield Department of Clinical Neurosciences, University of Oxford)
Paul Potts
Chris White (CFO, SWNS Media Group)
Paul Walters (CEO, SWNS Media Group)
Sadly, Prof. Dominic ffytche was unable to join us due to illness. We send him our very warmest wishes.
The future of Esme’s Umbrella
In January, Esme’s Umbrella will launch an essay prize aimed at medical students, with ‘Charles Bonnet Syndrome’ as its theme. A new training video, entitled ‘Out of Sight, but not Out of Mind’ (supported by Scope Eyecare) will be made available to anyone who requests it, including care homes, with the aim of preventing people with CBS from being wrongly sent to dementia units.
The charity continues its campaign to persuade ophthalmologists and optometrists to warn their patients about the possibility of developing CBS. Judith is also working with the Royal College of GPs to ensure more family doctors are aware of the condition, and is encouraging more training for ophthalmic nurses. CBS is already taught to nurses at Manchester University, and the charity is hoping it will be rolled out at Moorfields and Bristol Eye Hospital. Work is also underway to persuade the NHS to create a CBS pathway for diagnosis and treatment.
With the charity status of Esme’s Umbrella now confirmed, Judith is looking for more help in running the organisation, in terms of both time and funding. Anyone interested in volunteering, finding out more or donating is encouraged to visit the website of Esme’s Umbrella or contact Judith directly: judith@charlesbonnetsyndrome.uk
More about Charles Bonnet Syndrome
In 1760, Charles Bonnet, a Swiss philosopher, was the first to describe the condition that would later bear his name. However, the medical profession and wider society has only recently started to pay more attention to CBS and to investigate its causes, effects and possible treatment.
The hallucinations associated with CBS are silent, and generally appear in two forms:
Simple, repeated patterns or shapes, such as grids
Complex hallucinations of people, objects and landscapes
Although the hallucinations can be vivid, disturbing or frightening, those affected by CBS are usually aware that what they are seeing is not real.
There is no cure for CBS, but everyone with the condition experiences it differently. For most, the hallucinations will get less frequent over time, but others may experience them throughout their lives.
To find out more about CBS, visit the website of Esme’s Umbrella: charlesbonnetsyndrome.uk