Esme’s Umbrella offers a safe shelter for anyone living with Charles Bonnet Syndrome.
Donate
To source funding for vital CBS research, Esme’s Umbrella has launches ‘Out of Sight but not out of Mind’ to raise awareness to caregivers of Charles Bonnet Syndrome, Please donate:
What We Do
Esme’s Umbrella offers a safe shelter for anyone living with Charles Bonnet Syndrome, their families and friends. On this website you can find:
- An explanation of the Charles Bonnet Syndrome (CBS) – current understanding of what it is, why it happens and the latest research results.
- Not all GPs or hospital doctors are fully aware of the signs and symptoms of the Syndrome and how it differs from other conditions.
- If you think you or a member of your family has developed the Syndrome, the printable leaflet on the website can be shown to the doctor.
- Contact details for local support groups and charities who can help. Information about current and past research.
Awareness
To raise awareness of Charles Bonnet Syndrome, among healthcare professionals and out into the community.
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Information
To give information about CBS and create ways to offer comfort, reassurance and practical advice to those who have developed the condition – and their families.
Download our GP Info Leaflet Here
Fundraising
To source funding for vital CBS research.
Esme’s Umbrella has launches ‘Out of Sight but not out of Mind’ to raise awareness to caregivers of Charles Bonnet Syndrome – the extremely common, but little recognised condition which affects 1 million people in the UK.
Out of Sight but not Out of Mind
Our new Campaign is directed at Caregivers, Sensory Workers, Care and Nursing Homes. This is our training course designed to ensure that no one in a Care Home has been misdiagnosed. Too many people think – wrongly – that they have developed a mental health condition and confide in no one.
Residents and Caregivers all need to be aware of CBS and, after taking the course, all Care and Nursing Homes should display a ‘CBS-friendly’ sign.
#WiseUp Campaign
We have prepared a letter for you to print and take to your own GP. This forms the basis of the Wise Up campaign we have launched.
Please do click on the image of the letter and download it and please do send it to your GP.
The greater the awareness, the greater the education of Charles Bonnet Syndrome will lead to correct diagnosis and help where needed.
Or CLICK HERE to download
Visual Hallucinations after sight loss
This is a condition called Charles Bonnet Syndrome (CBS), which can develop in someone of any age – children too – who has lost over 60% of sight. It causes vivid, silent, visual hallucinations which range from disturbing to terrifying. It is not a mental health condition, but caused entirely by loss of sight.
Not everyone with sight loss develops CBS but, for those who do, the condition can be distressing and debilitating – not least because it may be confused, mistakenly, with the onset of a mental health condition.
Far too many people who develop CBS have received no warning about the condition and, consequently, confide in no one.
Professor Dominic ffytche (King’s College London), who is medical adviser to Esme’s Umbrella, explains “From the moment we open our eyes, the nerve cells in the retina send a constant stream of impulses along the visual pathways, which are passed to the visual parts of the brain. If the retina is damaged, the stream of impulses reduces. Paradoxically, the response of the brain is not to reduce but, rather, to increase the cells firing and it is this increase that causes visual hallucinations”
“Charles Bonnet syndrome is surprisingly common, and may affect up to 50% of people with severe visual loss. It can also be terrifying and has a huge impact on quality of life. There is no cure and the current treatment options are very limited. I am happy to support Esme’s Umbrella in their work to raise awareness of this debilitating condition”
– Dr Sarah Jarvis MBE
Who was Esme?
Esme was Judith Potts’ mother.
Having trained as a children’s nurse at Paddington Green Children’s Hospital, Esme’s long working life was spent looking after people – from new born babies to school-children; as a welfare officer to nurses; and, in her seventies, stepping in to allow families a break from the responsibility of caring for an elderly parent.
Widowed in her thirties, with very little money – but with a 2 year old daughter – this typical Edwardian lady coped stoically with all life threw at her. She particularly loved children and relished time spent with her two grandchildren.
Resourceful and creative – her sewing machine always at the ready – she remained sprightly and lived an independent life, completing the Telegraph cryptic crossword every day. Glaucoma had been diagnosed when she was in her eighties, but it was when Charles Bonnet Syndrome struck that her life changed irretrievably.
Like too many others, she said nothing until she could bear it no longer. Her quality of life was being challenged and her fear of mental illness was paramount. By the time she finally confided in Judith about her ‘visions’ – faceless people on her sofa, a tear-stained Edwardian street child, a hideous gargoyle-like creature and sometimes the whole room morphed into an alien place – the hallucinations had reached constant and terrifying proportions. They remained with her for the rest of her life.
It seemed entirely fitting to name the CBS campaign after her.
Judith Potts
Founder of Esme’s Umbrella
Judith was an actor and a voice, acting and presentation coach.
She wrote plays and recitals for young children; trained child and young actors in voice and characterisation and aught the London Academy of Music and Dramatic Art examinations syllabus.
She trained senior executives from all areas of industry and the city in the art of presentation, using the skills of the performing arts.
For nine years she wrote a Health Column for The Telegraph. Her subject was cancer – following a diagnosis of breast cancer – and the work of the health charities. When her mother, Esme, developed Charles Bonnet Syndrome, the condition became an important part of her Column.
She is married with two children, three grandsons, three step-children, five step-grandchildren and a border collie.
Richard Hawley
Patron of Esme’s Umbrella
Richard Hawley is a British actor, best known for his work in Grushko, Prime Suspect, Family Affairs and Love Actually.
He is currently playing Johnny Connor in Coronation Street. Johnny developed optic neuritis from his MS, which caused Charles Bonnet Syndrome (CBS) to develop.
Following Richard’s moving portrayal of what it is like to live with CBS, Esme’s Umbrella’s Helpline received just under 1900 calls and Richard accepted the invitation to be Patron of Esme’s Umbrella.
Professor Dominic ffytche BSc MBBS MD MRCP MRCPsych
Medical Adviser to Esme’s Umbrella
Professor ffytche is an academic old age psychiatrist with a special interest in visual perception and its dysfunction. He is Professor of Visual Psychiatry at the Institute of Psychiatry, Psychology and Neuroscience, King’s College London – the only such post in the world – and Consultant at the Maudsley Hospital, where he runs a national specialist clinic for Charles Bonnet Syndrome and other visual perceptual disorders.
He has published extensively on clinical and neuroscientific aspects of visual hallucinations and is the sole, globally-acknowledged expert on Charles Bonnet Syndrome. He was Principal Investigator on the NIHR-funded SHAPED programme (Study of Hallucinations in Parkinson’s disease, Eye disease and Dementia).
Professor ffytche has been named as the number one expert in the world for visual hallucinations.
For links to some of Professor ffytche’s CBS research articles, please click here
Nina
Special Friend to Esme’s Umbrella
Nina Chesworth developed Charles Bonnet Syndrome in 2018 when she lost her sight. With a degree in Design and Art Direction from Manchester University – which she took, despite being visually impaired following a bout of flu when aged 2 – Nina opened Craft Café in Chorlton, Manchester.
As an adult, two accidents took the sight of both eyes, after which she re-trained as an holistic therapist, specialising in massage, meditation, aromatherapy and reflexology.
Her Five Senses Therapy is the result and her creative skills are still very evident in her therapy products and the jewellery she designs.
Nina is the Facilitator for Esme’s Friends’ chat and support group in Manchester.
She runs a support and social group for VI adults of working age and is a member of Thomas Pocklington Trust’s Sight Loss Council for Manchester.
Nina can be found on Twitter @blind_but_sound and her Blog is here
She is married, with a son and a stepson.
- Esmes Umbrella Just Giving Page
https://checkout.justgiving.com/c/3419332 - Sightline telephone befriending service
Established in 2003, Sightline was set up by Eileen Green who was herself registered blind. She identified a need for visually impaired people to have an opportunity to communicate their experiences, from the comfort of their home. https://www.sightline.org.uk/ - Visionary
Visionary is the membership organisation for sight loss charities. - Sight Research UK
https://www.sightresearchuk.org/ Sight Research UK funds research into sight-threatening conditions in the UK. - Blind Veterans UK
https://www.blindveterans.org.uk Blind Veterans is a support and research charity for ex-servicemen and women of every generation. - RNIB
www.rnib.org.uk Royal National Institute of Blind People offers information, support and advice. The Eye Health Team answer Esme’s Umbrella’s Helpline – 020 7391 3299 - Macular Society
The Macular Society offers a 6-week telephone support group for people with CBS (no matter what has caused their sight loss) and one-to-one CBS Buddies, or counselling, for people who would like to speak to someone who has experienced CBS. https://www.macularsociety.org - Retina UK
Retina UK supports people affected by inherited progressive sight loss and invests in medical research. CBS Buddies are available. - Thomas Pocklington Trust
Thomas Pocklington Trust supports blind and partially sighted people of all ages to live the life they want to lead. Focusing on Education, Employment and Engagement, it funds a broad range of projects that support the delivery of positive outcomes for blind and partially sighted people across the UK. pocklington-trust.org.uk - Gene Vision
https://gene.vision/ Genevision is a resource on rare genetic eye disorders for everyone. - Fight For Sight
https://www.fightforsight.org.uk Fight for Sight leads the way in pioneering research to stop sight loss. Esme’s Umbrella’s Restricted Fund is held by Fight for Sight and the money collected goes entirely to CBS research – www.justgiving.com/fundraising/EsmesUmbrella
Health Shared & Esme’s Umbrella
Access our community at Health-Shared
Esme’s Umbrella welcomes you to join the Charles Bonnet Syndrome Community at Health-Shared.com.
Helpful information for professionals and patients is included which is regularly updated.
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